Living with Spinal Cord Injury

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Living with Spinal Cord Injury: A Wellness Approach

Adrian Cristian, M.D. Assistant Professor Department of Rehabilitation Medicine Mount Sinai School of Medicine New York, New York and Chief, Physical Medicine & Rehabilitation Bronx VA Medical Center Bronx, New York

New York, New York

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Demos Medical Publishing, Inc. 386 Park Avenue South, New York, NY 10016, USA. Visit our website at www.demosmedpub.com. © 2004 by Demos Medical Publishing, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher. Library of Congress Cataloging-in-Publication Data is available from the publisher upon request.

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DEDICATION To my wife who is my source of strength and encouragement; To my children who are a well of bounding enthusiasm and optimism; To my parents, sister, and grandmother who taught me the meaning of perseverance in the face of adversity; To my teachers and mentors—Drs. Adam Stein, Jerry Weismann, and Kristjan T. Ragnarsson who taught by example; To my patients who always challenge and inspire me.

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ACKNOWLEDGMENTS I would like to thank the following individuals who provided guidance in the completion of this book: Diana M. Schneider Ph.D., Jimmy Nichols, K.T., Adam Stein, M.D., Kristjan T. Ragnarsson, M.D., Ziggy Landsman, O.T., Dawn Cook, M.S.W., George Deitrick, M.D., Daniela Spector D.D.S., Yuval Spector D.D.S., Gerald F. Sabol D.D.S., Daniel E. Macdonald D.D.S., and John Piro D.D.S.

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Preface

Chances are that if you are reading this book, you or someone important to you has been living with a spinal cord injury (SCI) for a long time. We are fortunate that medical advances have made it possible for people to live with SCI for many years, enabling them to lead full, meaningful, and productive lives. Like their friends and colleagues, they work, raise families, and compete in sports. However, as your body ages and you experience the changes associated with getting older, activities that you once considered easy may now be more difficult. Perhaps pushing a wheelchair up a hill or transferring in and out of a car is more challenging than it once was. You are not alone— many people living with SCI face these difficulties every day. About 40 percent of all people with spinal cord injuries are over the age of fortyfive, and 25 percent of them have had their injury for at least twenty years. Until about thirty-five years ago, many people with SCI led fairly sedentary lives, then a new generation of SCI survivors began to challenge earlier notions of what a person with SCI was capable of accomplishing. They began to push themselves to levels of function that matched or superseded their non-SCI counterparts. The most common examples of this occurred in athletic competitions—wheelchair races, tennis, and basketball to name a few. “No pain, no gain” and “use it or lose it” were the mantras to live by. As a result, that generation of superachievers were able to create an aura of relative invincibility. This led to the enactment of laws that integrated wheelchair use into the mainstream of American life. However, that aura of invincibility is now being challenged by the wear and tear associated with aging and SCI. As a “baby boomer” living with SCI, you face similar health problems to those of your non-spinal vii

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cord-injured counterparts. In addition, you have to deal with problems that are directly related to the SCI. The major challenges that you will face as you get older are related to health, finances, and your social support system. Heart disease, pneumonia, urinary tract infections, pressure sores, and painful arm and shoulder problems are common health ailments. Declining financial resources and aging caregivers are common social problems. This book is meant to accomplish two goals. First, it identifies the medical and nonmedical problems that you might face as you get older. The second and more important goal is to provide hope and practical advice on how to tackle the challenges that lie ahead. Through vigilance and planning, a person with spinal cord injury can age gracefully and have a good quality of life for many years.

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Foreword

Spinal cord injury (SCI) is a catastrophic event with lifelong consequences for all aspects of the injured person’s life, as well as for family and friends. Appropriate early management and comprehensive rehabilitation usually will allow the person with SCI to regain a state of physical health, and to achieve the highest level of mobility and self-care functions that are compatible with the extent of disability. But what happens thereafter? Many persons with SCI live a life of good health, self-sufficiency, and dignity while enjoying social, vocational, recreational, and economic success. Unfortunately, others continue to battle various medical problems associated with their SCI, unable to maintain self-sufficiency or return to any gainful activities. Many people with SCI now live to an advanced age, whereas others succumb to life’s adversities and medical illnesses. Why is there such a difference in the lives of people with SCI? Unfortunately, there are no simple answers to this question. Of course, access to excellence in medical and nursing care is important. An appropriate social network of family, friends, and community resources is essential for survival and success. For example, a destitute homeless person without any financial or social resources must be considered to have a bleak future in our society, but if compounded by a disability, such as SCI, life expectancy and all chances for success for such a person would be far worse. How do people with SCI maximize the quality of their lives? What can they do to make those remaining years healthy, productive, and satisfying? Essential for successful living after SCI is knowledge about its physiologic consequences, available means to prevent medical complications, and the different ways to access community resources and to secure financial support. ix

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This book is written to help people with SCI and their families to gain such knowledge. It is to be studied and, whenever possible, readers must carefully consider the advice it offers and practice the methods that are presented to help them in order to achieve better health and function. Good health, longevity, and SCI are indeed compatible, but should not be taken for granted. Knowledge and lifestyle habits can do much to make life better for all. Kristjan T. Ragnarsson, M.D. Lucy G. Moses Professor of Rehabilitation Medicine Mount Sinai School of Medicine Chairman, Department of Rehabilitation Medicine Mount Sinai Medical Center

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Contents

1. Introduction: Living with Spinal Cord Injury. . . . . . . . . . . . . . . . . . 1 2. The Cardiovascular System. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 3. The Respiratory System. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 4. The Gastrointestinal System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 5. The Urinary System. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49 6. The Musculoskeletal System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59 7. Skin and Dental Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85 8. Your Emotional Well-Being . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99 9. Wheelchairs: The Key to Mobility . . . . . . . . . . . . . . . . . . . . . . . . . 109 10. Vans and Minivans. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123 11. A Fresh Look at Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . 131 12. Managing Your Finances. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137 13. Insurance Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141 14. Managing a Home Health Attendant. . . . . . . . . . . . . . . . . . . . . . . 149 Appendices A. A Note for Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157 B. Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163 C. Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169 Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171

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1 Introduction: Living with Spinal Cord Injury

We live at a time when medical advances have made it possible to live with spinal cord injury (SCI) for many years, and to lead a full, meaningful, and productive life. However, about 40 percent of all people with spinal cord injuries are over the age of forty-five, and 25 percent of them have had their injury for twenty years or more. As a result, the “wear and tear” on the body associated with aging and SCI must be added to the health problems that non–SCI people face—heart disease, high blood pressure, diabetes, and arthritis, to name just a few. This book was written for the individual living with a spinal cord injury who wants to ensure that the effects of aging will be minimized by appropriate management. It considers both the medical and nonmedical issues that are most relevant to people with SCI. Medical issues are considered by body system, and include: ■

The cardiovascular system. The heart and vascular system of a person with SCI are stressed by weight gain, high cholesterol, diabetes, and lack of exercise; all of these can place great stress on the heart and increase the risk of sustaining a heart attack.

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Managing your diet and exercise can go a long way towards minimizing these problems. The respiratory system. Problems related to weakened muscles used for respiration, especially in the quadriplegic individual, and difficulties in removing secretions that accumulate within the lungs can predispose you to lung infections. Medications, physical therapy, and cessation of smoking can all help in minimizing these problems. The gastrointestinal system. Bowel function is often impaired after SCI, but maintenance of an effective bowel routine can minimize any long-term consequences of loss of nervous system control over this organ system. The urinary system. As with the bowel, kidney and bladder function is often impaired by SCI, and long-term catheterization can predispose you to a number of problems, many of which can be minimized by medications and improved catheters. The musculoskeletal system. The repetitive strains associated with years of pushing a wheelchair, and the development of osteoporosis below the level of injury, can lead to a number of problems, including contractures, fractures, and painful joints. These problems can be prevented or minimized with appropriate care. The skin. Effective skin care is a major component of good health following SCI, especially the avoidance of pressure ulcers due to inadequate pressure relief. Measures to prevent pressure ulcers and to manage them when they do occur are emphasized. Your emotional well-being. Life after SCI involves many challenges, only some of which are physical. This chapter addresses the most common psychological issues that you may have to confront, and offers some suggestions on how to cope with them.

Following these discussions of common medical issues related to SCI are sections that deal with mobility and transportation issues, including wheelchairs, the selection of vans and minivans, and the usefulness of a

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Chapter 1 Introduction: Living with Spinal Cord Injury | 3

fresh look at rehabilitation to ensure that you are taking advantage of all available techniques, strategies, and equipment to maximize your day-today life with SCI. A section on managing your finances includes a chapter on dealing with home health attendants. Finally, appendices provide information for caregivers, a glossary of commonly used terms in SCI, and a helpful list of resources. This book was developed to help you keep active and independent. Through vigilance and planning, you can live a long and productive life despite the difficulties posed by SCI. The following guidelines summarize some of the key points that will be described in detail later in this book. The “pearls of wisdom” you will find in it have been provided by other spinal cord injured people as well as experts in the field.

STOP SMOKING By now you have probably heard about all the bad things smoking does to you. If you are living with a spinal cord injury, you are automatically at risk for lung-related problems due to the limited function of the muscles involved in your breathing, including the diaphragm, your abdominal muscles, and the muscles in your rib cage. Smoking compounds the problems in an already compromised organ.

DON’T ABUSE ALCOHOL Alcohol can affect many organs and systems in your body including your nervous system.

EAT HEALTHY You are at risk of gaining weight if you sit in a wheelchair all day. The increased weight can lead to heart problems (such as a heart attack) and can also increase your risk of pressure ulcers due to a poor fit inside your wheelchair and greater pressure on sensitive areas in your buttocks and legs.

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To avoid weight gain, eat a diet that is low in carbohydrates and fats and provides an adequate amount of protein. This is especially important when you are trying to heal a pressure sore. Speak to a nutritionist and your doctor about these and other dietary concerns.

DRINK AN ADEQUATE AMOUNT OF WATER EVERY DAY Ideally, you need about one to two quarts of fluid per day. However, if you are on a fluid restriction diet, speak to your doctor about what is an adequate amount for you.

MONITOR SKIN FOR PRESSURE SORES EVERYDAY Get in the habit of examining your skin on a regular basis, and be sure to include the heels, hips, and buttocks. If you can’t do this yourself, then instruct your caregiver to do it for you. You should also be performing weight shifts every 30 minutes on a regular basis by moving side to side in the wheelchair, or by leaning forward. Each weight shift should last 30 seconds. Your aide/caregiver can assist you with this as well. Depending on your level of injury, you also might want to consider using a motorized wheelchair with a seat that tilts back to reduce pressure on sensitive areas.

EMPTY YOUR BLADDER ON A REGULAR BASIS The longer that urine stays in your bladder, the higher your risk of a urinary tract infection. If you can and your doctor recommends it, catheterize yourself or self-void at regular intervals several times per day.

RANGE OF MOTION DAILY Stretching is important to prevent stiffness and contractures, so it is a good idea to have your limbs stretched once or twice each day. Your legs

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should be stretched at the ankles, knees, and hips. Your hips can be stretched while you are lying on your stomach. If your arms are also affected by the spinal cord injury, your shoulders, elbows, and wrists should also be stretched. But a word of caution: Your limbs should be stretched only within the available range of motion. Overstretching can lead to bone fractures in the involved limbs.

PROTECT YOUR SHOULDERS AS MUCH AS YOU CAN Shoulder pain is one of the most common problems encountered by people with SCI who push their own wheelchairs and do their own transfers. You can minimize this risk by keeping your shoulder muscles strong and limber. Don’t push yourself to the point of pain, and rest the shoulders as often as possible. Or consider a power wheelchair. You will be protecting your shoulders and your arms from further injury.

CHOOSE A FAMILY DOCTOR WHOM YOU CAN WORK WITH AND TRUST One of the big problems faced by people with spinal cord injuries is finding a family doctor who is knowledgeable about all aspects of their condition. Many family doctors don’t know very much about spinal cord injuries and don’t have wheelchair-accessible offices. However, there is now a medical subspecialty devoted to the care of people living with spinal cord injuries. To find a specialist in this field, you can contact the American Board of Physical Medicine and Rehabilitation, or some of the more prominent rehabilitation centers in your state. Such a center may be able to provide the services you need or refer you to a practitioner in your area. If you are unable to find a specialist in your community, choose a doctor with a wheelchair-accessible office and be prepared to educate her about spinal cord injury (and your condition in particular). Work hard with your doctor at having an open, honest relationship.

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KEEP A SUMMARY OF YOUR MEDICAL RECORDS It is a good idea to have a summarized copy of your medical records with you at all times. This document should be about three to four pages long and should contain information about your SCI, pertinent surgeries, xray reports, allergies, and current medications. It should also include the names and telephone numbers of specialists who have been prominently involved in your care.

DON’T BE RESISTANT TO EQUIPMENT MODIFICATIONS OR NEW EQUIPMENT The goal is to remain as independent as possible for as long as possible. Consider a power wheelchair if you are experiencing problems with your shoulders and/or wrists. Consider a sliding board to help with transfers in and out of a car. Mechanical transfer lifts are available for use inside the house to assist with bed and bathroom transfers. The modifications you needed when you first became injured may be different from the ones you need today or will need tomorrow. Speak to an occupational therapist at a local spinal cord injury rehab hospital and have him review your current situation and make recommendations for home modifications.

BE YOUR OWN CASE MANAGER No one knows what you need better than you do. You should be in charge of coordinating all aspects of your care. This means having a file that includes your case history and the names of the various providers and vendors you deal with, as well as a list of contact people at each organization (for example, your insurance company). It also means being proactive rather than reactive. Plan on having a backup home health attendant whom you can count on in case your current one quits or cannot come in one day. Plan on ordering catheters

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ahead of time if you are running low, as opposed to waiting until the last minute.

GET THE HIGHEST LEVEL OF EDUCATION YOU CAN This is important because it correlates well with your ability to earn money. Having a good income is necessary to buy the things that will keep you independent as long as possible.

CULTIVATE RELATIONSHIPS! DON’T ISOLATE YOURSELF Establish a network of people with whom you can socialize with on a regular basis. This can include family members, friends, or members of your house of worship. In a crisis they can be an excellent source of support.

PROTECT YOUR SPOUSE/SIGNIFICANT CARETAKER FROM BURNOUT Your spouse or significant other is probably your single biggest long-term asset. However, as she gets older, health conditions may develop that can affect her ability to care for you. For example, her back problems can make transfers more difficult. Burnout is also a problem. Taking care of all your needs twenty-four hours a day/seven days a week can take its toll. First and foremost, you should have an honest talk with your significant other. Ask him what aspects of your care are presenting the most difficulty. If it involves your morning routine, consider a home health attendant during that time. Persuade him to pursue an outside interest to provide respite and renewal of physical and emotional energy. Last, you should both develop a contingency plan should he no longer be able to care for you.

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MAKE YOUR HOME AS WHEELCHAIR ACCESSIBLE AS POSSIBLE You may find as you get older that the modifications you made to your home when you were younger are no longer adequate. You may need more space for a live-in attendant, or for maneuvering a power wheelchair. Or, you may want to consider moving into a wheelchair- accessible home with enough room for a live-in attendant. In either case, some advance planning—financial as well as logistical—is required.

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2 The Cardiovascular System THE EFFECTS OF SCI ON THE HEART AND CIRCULATORY SYSTEM Your heart is a muscle that is divided into two halves—a left half and a right half. Each half has an atrium and a ventricle and is separated from the other by a thick muscle wall. Each atrium is located on top of its accompanying ventricle. The left atrium is connected to the left ventricle via an opening covered by the mitral valve. The right atrium is connected to the right ventricle via an opening covered by the tricuspid valve. These one-way valves ensure that when the heart contracts, the blood flows in only one direction—from atrium to ventricle. The heart’s basic function is to pump oxygenated blood through the body to provide nourishment to all its organs and to receive unoxygenated blood from the body and send it out to the lungs to be re-oxygenated and pumped back into the system. The heart receives the unoxygenated blood in the right atrium via large veins from the body and sends it into the right ventricle and from there to the lungs. Once oxygenated, the blood returns from the lungs to the left atrium. From there it enters the left ventricle and is then pumped out to the body via a large artery known as the aorta. It is a carefully orchestrated juggling act that is performed several thousand times per day (Figure 2-1)! 9

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BLOOD COMING IN FROM LEFT LUNG

BLOOD GOING OUT TO THE BODY (BY WAY OF THE AORTA) BLOOD GOING OUT TO THE RIGHT LUNG

BLOOD GOING OUT TO THE LEFT LUNG

LUNG

LEFT ATRIUM

BLOOD COMING IN FROM RIGHT LUNG BLOOD COMING IN FROM UPPER BODY RIGHT ATRIUM BLOOD COMING IN FROM LOWER BODY

LEFT VENTRICLE RIGHT VENTRICLE

HEART

Figure 2-1 The cardiovascular system. Reprinted with permission from the Paralyzed Veterans of America (PVA), 801 18th Street, NW, Washington, DC 20006. Phone: (202) 872-1300. Email: [email protected]. Web site: www.pva.org. Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury (3rd Edition), © Paralyzed Veterans of America, 2000.

Since the heart is a muscle, it needs oxygen and nutrients to work. These materials are brought to the heart via an elaborate system of blood vessels known as the coronary arteries. The heart receives nerve input from the spinal cord and brain that tells it when it needs to pump faster (the sympathetic nervous system, or SNS) and when to pump slower (the parasympathetic nervous system, or PNS). For example, when a non-SCI person is running in a race, the SNS tells the heart to pump faster. Later, after the race is over and the person is resting, the PNS tells the heart to beat slower. After a spinal cord injury above T6, the heart no longer receives input from the SNS. It receives input primarily from the PNS, and as a result, it beats more slowly. To make matters worse, due to gravity and paralysis of the lower limbs, you store blood in your legs, which limits the amount of blood that returns to the heart. The combination of a slowed

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Chapter 2 The Cardiovascular System | 11

heart beat and pooling of blood in the legs can lead to low blood pressure (hypotension). If you are dizzy sitting upright in your wheelchair, this is known as orthostasis and is caused by low blood pressure. The danger of hypotension is that the brain and other vital organs may not get an adequate amount of blood and, therefore, will not function well. There are several ways that this can be addressed through the use of abdominal binders, compression stockings, recliner wheelchairs, and medications, if necessary.

HEART DISEASE Heart disease is one of the leading causes of death in people living with SCI in the United States. The reason most often cited for this is the inactivity associated with SCI. Sitting in a wheelchair for most of the day can lead to increased body weight, elevated bad cholesterol (LDL), and decreased good cholesterol (HDL). The risks for heart disease are further increased if you have diabetes, high blood pressure, and are a smoker. The final common denominator for all these risk factors is fatty deposits and hardening inside the walls of the coronary arteries, which leads to narrowing of those vessels. This process, known as atherosclerosis, is a very gradual process that only becomes apparent when you experience symptoms of an acute blockage of a vessel, such as chest pain or a heart attack. A heart attack usually occurs when a small piece of fatty deposit breaks off from an artery wall and lodges itself inside the narrowed vessels. This leads to a stop or a critical reduction in the amount of blood that supplies your heart with oxygen and nutrients, without which a part of the heart muscle can be permanently damaged. If a major artery is blocked, there is increased risk of death from the heart attack.

THE BENEFITS OF EXERCISING By now you have probably heard about the importance of exercising. There are books, magazines, videotapes, and television shows devoted to

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describing the benefits of exercise to your heart, muscles, and mind. In the rest of this chapter I will address some of these benefits as well as some of the challenges that you face if you exercise with SCI. There are several benefits to incorporating some type of exercise into your everyday life. First and foremost, you help decrease some of the risk factors for heart disease. As mentioned above, sitting in a wheelchair for most of the day can increase your risk of heart disease. You are not burning up many calories, but your food intake may have remained the same as it always was or even increased. As a result, your body weight has increased, and this adds more work for your heart. Another risk factor for heart disease is elevated cholesterol, which is often associated with a diet high in saturated fat. Exercise can help decrease body fat and help decrease levels of the “bad cholesterol” (LDL), and triglycerides. It can also increase levels of the “good cholesterol” (HDL), and can help decrease your blood pressure, which in turn places less stress on your heart. If you have diabetes, your body’s tissues may not release, absorb, or respond to insulin very well. As a result, your blood sugar levels become elevated. Diabetes affects many organs in your body—the heart, the kidneys, the eyes, the blood vessels, and the nerves in your limbs. It increases your risk of heart attack, stroke, kidney failure, or amputation. Exercise can help your body’s tissues absorb insulin better and reduce your need to take insulin or diabetes medications. Exercising can also improve strength and decrease fatigue in weakened limbs. This is important for performing functional activities, such as transferring in and out of a bed, bathtub, or car. There is some scientific evidence that exercising may help strengthen certain bones in your body, such as the spine, thereby reducing the risk of fracture. Some say that your risk of developing blood clots in the limbs is also decreased because of improved blood flow in the limbs.

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CHALLENGES AND CAUTIONS ABOUT EXERCISING WITH SCI Although there are many benefits associated with exercising, there are also some challenges and concerns to keep in mind. Before beginning any exercise program, you should get a thorough physical examination and obtain a medical clearance from your doctor. Some of the things that your doctor will check during that visit are the range of motion in all your limbs, spasticity, pressure sores, cholesterol levels, and blood pressure. Range of motion in the limbs is important because most exercise machines require a fairly well preserved range of motion in order to minimize the risk of injury and to maximize the exercise benefit. Therefore, conditions such as contractures or abnormal bony deposits around key joints (heterotopic ossification) would preclude using certain types of exercise equipment because of the increased risk of injury. Pressure sores can also be potentially worsened by prolonged sitting while exercising muscles in your arms. Low blood pressure (hypotension) can be a cause of concern during exercise because the increased demand for blood flow by different parts of the body may not be adequately met by changes associated with high levels of SCI (above T6). This, combined with the fact that blood has a tendency to pool in your legs, may cause you to feel dizzy, or even lose consciousness. Your doctor may recommend a stress test for your heart prior to starting an exercise program, particularly if you have lived with SCI for a long period of time and have led a predominantly sedentary life or have several risk factors for heart disease. He may also place some restrictions on the types of exercises that you can safely perform. A separate concern during an exercise program is related to your ability to tolerate temperature changes. Again, this primarily affects those whose injury level is above T6, because of a decreased ability to sweat and cool the body efficiently. It is particularly important if you are planning to exercise outdoors. If it is hot outside, your body temperature rises, and

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you are at risk of overheating. If it is cold outside, your body temperature decreases and you are at risk of hypothermia. Therefore, you have to dress appropriately. In hot weather, bring cool, moist towels to apply to the skin. In cold weather, dress in layers. One particularly difficult challenge is how to raise your heart rate during exercise. This is an important goal of exercising, because it is what helps the heart pump more blood into exercising muscles and become more efficient in the way it works. In an exercising non-SCI person, the heart rate gradually increases until it reaches a target level range, which is typically calculated by using a formula based on your age. It has been shown that the heart of the non-SCI person exercising at target level gets the most benefit from exercising while not suffering harm. The problem if you have SCI above T6 is that there are enormous obstacles to raising your heart rate very much above its baseline resting level. Your arm muscles may be too weak to work hard enough on an exercise machine to raise your heart rate to the target level. Primarily using your arms instead of your legs for exercising puts you at a disadvantage, because the muscles in the arms are smaller than those in the legs. This is also why pushing a manual wheelchair is not enough to raise your heart rate to the target exercise range. As you can see, there exists a dilemma. On the one hand, I have described some of the wonderful benefits that you can derive from exercising and the possible problems that you can encounter if you do not exercise. On the other hand, I have described the difficulties of raising the heart rate to the necessary level during exercise to derive those benefits and ward off those health problems. (If your level of injury is below T6, you are more fortunate, because you can potentially raise the heart rate to an acceptable exercise level.) A technology has gradually developed over the years to help address this problem. Known as Neuromuscular Electrical Stimulation (NMES), it involves applying an external power source to electronically stimulate the muscles in your legs. This causes the muscles to contract in a sequential fashion, thereby enabling them to push on the pedals of an exercise

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bicycle. NMES can be used in conjunction with an arm bicycle device known as an upper extremity ergometer (ERGYS AND REGYS, Therapeutic Alliances, Inc., Fairborn Ohio, StimMaster, Electrologic of America Inc. Beaver Creek, Ohio). Therefore, more effort is generated by larger muscle groups, which in turn may help elevate the heart rate to an exercise target level. Experts believe that such exercise systems may help people living with SCI in the prevention of heart disease. Another potential challenge in exercising with SCI is autonomic dysreflexia (AD). This is a potentially life threatening condition where the blood pressure is elevated to very high levels. The cause for such a rise in the blood pressure is usually a minor event such as a kinked urinary catheter, full bladder, impacted bowel, or even an ingrown toenail. Other causes include pressure sores or infections. Autonomic dysreflexia is seen in people whose SCI is above the T6 level. The heart rate may be quite low during the episode, but the elevated blood pressure can cause stroke or heart attack in someone who has underlying heart disease. Typical symptoms include headache, flushed skin, and stuffy nose. The treatment often is as simple as inserting a catheter inside the bladder in order to empty it, or checking the catheter tubing for any kinks. If these treatments do not reduce the blood pressure, then medication may be required. I mention AD in this section, because it may occur while you’re exercising. After SCI, the bones below the level of the injury lose a great deal of calcium and become brittle. Thus they are at higher risk of sustaining a fracture, especially the bones of the legs. This can be a problem if your exercise program includes stretching of the limbs. Your therapist should perform slow, gentle stretches in the available range. The signs of a fractured bone may be somewhat difficult to identify at first, because you may not feel any pain. However, the limb may become swollen and you may develop a low grade fever. An X-ray can confirm the presence of a fracture. The above mentioned challenges should not stop you from starting an exercise program. However it is advisable to check with your doctor first and then begin it under the supervision of a therapist.

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EXERCISE PROGRAMS Exercise programs can be divided into three main components—flexibility, strengthening, and aerobic. The goal of a flexibility program is to stretch your limbs so that they don’t stiffen and develop contractures. This is often an important component in the treatment of spasticity. The goal of a strengthening program is to increase the strength of weak muscles by lifting a weight that is heavier than you can typically lift. This is known as the overload principle. You gain strength by lifting a very heavy weight a few times or a lighter weight more times. Strengthening can also be accomplished by performing isometric, isotonic, or isokinetic exercises. To understand these types of exercises, it helps to know that muscles work by contracting, and that they are attached to limbs. When a group of muscles contract, they typically pull on the limb. For example, the biceps is the muscle located in the middle part of your upper arm. It shortens as it contracts, and this bends your elbow, enabling you to bring your hand closer to your face. This is known as an isotonic exercise, because there was a change in the length of the muscle during the contraction. In isotonic exercises, muscles shorten or lengthen. When a muscle shortens as it contracts, it is known as a concentric contraction (Figure 22a). In the above case, the biceps shortened as it contracted, enabling the elbow to bend. When a muscle lengthens as it contracts, it is known as an eccentric contraction (Figure 2-2b). Thus, as the elbow bends while holding a weight, the biceps muscle shortens; whereas when it straightens out while holding a weight, the biceps muscle lengthens. Lifting dumbbells is a type of isotonic exercise. In an isometric exercise, although the muscle contracts, it does not change in length (Figure 2-3). An example of this would be pushing with your arms against a wall. The muscles in the arms are working, but they do not shorten or lengthen. The advantage of this type of exercise is that

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A

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Figure 2-2 (a) A concentric contraction; (b) An eccentric contraction. Reprinted with permission by Kevin F. Lockette, Ann M. Keyes, and the Rehabilitation Institute of Chicago. Conditioning with Physical Disabilities. Human Kinetics., P.O. Box 5076, Champaign, IL 61825-5076.

it typically puts less stress on a joint and so is better tolerated if you have a painful joint. In an isokinetic exercise, an exercise machine moves at a constant, angular speed as you apply tension against it. Many rehab gyms have these types of machines. The aerobic component of an exercise program benefits your heart. It is typically accomplished by pedaling a stationary bicycle with your arms or legs, walking, or running on a treadmill. The maximal benefit is best derived by raising the heart rate to its target range and maintaining it there for 30 minutes or more. This activity should be performed on most days of the week.

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Figure 2-3 An isometric contraction. Reprinted with permission by Kevin F. Lockette, Ann M. Keyes, and the Rehabilitation Institute of Chicago. Conditioning with Physical Disabilities. Human Kinetics., P.O. Box 5076, Champaign, IL 61825-5076.

MUSCLE STRENGTHENING IN SCI Spinal cord injury affects different muscles, depending on the level of the injury and the completeness of the injury. In some people living with SCI, the leg muscles are primarily affected, whereas in others, there is involvement of both the arms and the legs. The muscles may be completely paralyzed, or only partially paralyzed. The amount of variability in the muscle involvement in SCI makes it difficult to describe a generic strengthening program for everyone. Such a program has to be individually tailored for you by your therapist and rehab physician. One of the major goals of embarking on a strengthening program is to remain functional. Pushing a manual wheelchair and performing transfers everyday requires strong arm and shoulder muscles. A strengthening program emphasizing key muscle groups can help accomplish that and also hopefully minimize pain. The principle that lifting weights can help with those activities is known as specificity of training.

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KEY MUSCLE GROUPS TO EMPHASIZE IN A STRENGTHENING PROGRAM The key areas that you should focus on with a strengthening program are the muscles of the arms, shoulders, back, and trunk. The muscles of the arms include the triceps, biceps, forearms, wrist flexors, and extensors. The shoulder and upper back muscles that are important include the deltoid, supraspinatus, infraspinatus, teres minor, pectoralis major, lattisimus dorsi, rhomboids, and trapezius. It is useful to work at strengthening muscles that are weak or are used a great deal. For example, pushing a manual wheelchair has a tendency to round your shoulders, thereby causing a strength imbalance between the muscles of the front and back of your shoulders. This can contribute to pain in the shoulders because some sensitive areas become irritated as a result. By strengthening muscles of the upper back and shoulder blade, you help address that imbalance, thereby decreasing your risk of developing shoulder pain. The rotator cuff muscles (supraspinatus, infraspinatus, and teres minor) deserve special mention because they have a common tendon that is often injured. These muscles are primarily located over your shoulder blade. They all combine to make up the rotator cuff tendon, which attaches to the bone of your upper arm, called the humerus. The action of the rotator cuff muscles is to turn your forearm outward and away from the body when the elbow is kept in a bent position. It is also used when you are trying to reach behind your head. Due to the obvious daily need for these muscles, they should be part of a strengthening program if your level of SCI permits it.

ADAPTIVE DEVICES FOR EXERCISING There are a variety of adaptive devices that can be used to exercise safely. These devices can compensate for weakness of various muscles in the arms. For example, air splints and elbow braces can lock your elbows in a

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straight position if your triceps are weak. The triceps, which are the muscles in the back of your upper arms, are important during transfers. If you have limited hand function, strapped weights to the wrists/hands can be helpful. Wrist cuffs can be used to attach pulley systems on exercise machines. Difficulties with low blood pressure or dizziness can be countered by wearing an abdominal binder. This is a piece of elastic material that wraps around your stomach and stays in place with Velcro. A recliner wheelchair can also be helpful because the back can be lowered quickly. Leg straps can be used to hold your legs down on a bench when you are performing a bench press. The straps attach your legs to the bench. A body strap ties your trunk to a wheelchair while you are performing exercises, which is useful if you have poor trunk balance.

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Maintain an ideal body weight. If you are overweight, speak to a nutritionist about ways to cut down on your food intake. She can help you come up with a diet that can substitute your high fat, high cholesterol menu for a heart healthy one. Stop smoking! There are many reasons to stop smoking that are even more critical if you have SCI. Smoking contributes to heart disease, lung disease (including cancer), and impairs healing from pressure sores. The sooner you quit, the better off you will be. Get a physical exam from your physician before starting an exercise program. As discussed in this chapter, exercising with SCI poses many challenges. If you have been sedentary for a long period of time, are overweight, and/or have a medical history of diabetes, you may have some underlying heart disease as well. A physician’s evaluation is important before you embark on a safe exercise program. A rehab physician is often very knowledgeable about SCI and exercise.

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Technique is very important. Using an improper technique can cause injury to the muscles and tendons. Make sure that you learn the proper techniques for lifting weights. A knowledgeable therapist can demonstrate these techniques and supervise you if necessary. Don’t overdo it. As mentioned above, good technique can minimize your risk of injury. If you are experiencing pain in the exercised muscles several hours after you stopped exercising, you probably overdid it and may have torn some muscle fibers. If you lift too much weight or have too many repetitions, or advance too fast in your exercise routine, you increase your risk of injury. Therefore start with low weights for a few repetitions and have frequent rest periods in between. Don’t increase the amount of weight lifted, the number of sets, or the number of repetitions too quickly. Don’t exercise beyond pain. The saying “no pain, no gain” is not a good saying. Pain is your body’s way of warning you that you are injuring yourself. Listen to and respect that warning. Dress appropriately. As I mentioned earlier, your body’s temperature does not regulate well if your injury is above T6. Therefore, in hot weather you run the risk of overheating, and in cold weather, you run the risk of decreasing your body temperature. You should abide by common sense precautions and dress appropriately. You should avoid exercising during extremes of temperature. Identify adaptive equipment that could make it easier to exercise. Your therapist can usually suggest some adaptive devices to make exercising with weights safer and fun. Some of the devices mentioned in this chapter include strapped wrist weights, leg/body straps, and wrist cuffs that can attach to exercise machine pulleys. Exercise with a friend. Exercising with a friend can be a lot of fun because you can motivate each other. In addition, a companion can provide you with assistance should you need it. Don’t exercise if you are not feeling well. If you have a pressure sore, urinary tract infection, lung infection, or other medical

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problem you are not at your best. To challenge your body by exercising under these circumstances can cause you additional health problems. You should refrain from exercising until your doctor clears you to return.

References Lockette KF, Keyes AM, entitled “Conditioning with Physical Disabilities,” Human Kinetics, 1994. Champaign. Nash MS, Horton JA. “Recreational and Therapeutic Exercise After Spinal Cord Injury” In: Kirshblum S et al eds., Spinal Cord Medicine Philadelphia: Lippincott Williams and Wilkins 2002:331–347. Ragnarsson, KT. “The Cardiovascular System.” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury New York: Demos Publications, 1993. Material for this part of the chapter was obtained from the work of Kevin F. Lockette and Ann M. Keyes entitled Conditioning with Physical Disabilities. This is a practical guide to exercising for people living with various types of disabilities such as SCI, amputations, and stroke, just to name a few. Another resource was the work of Mark S. Nash and John A. Horton entitled Recreational and Therapeutic Exercise after Spinal Cord Injury.

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3 The Respiratory System HOW DO WE BREATHE? We tend to take respiration—the act of breathing—for granted, but in fact, it is a very complex process that involves the coordination of numerous structures, with the end result being the exchange of carbon dioxide for oxygen. Oxygen is what your body needs to perform a vast number of biochemical processes, including the generation of energy for everyday activities. Carbon dioxide is the end product of many of those processes and thus needs to be eliminated from the body. The lungs are located in the middle of your chest and are essentially large, air-filled bags. They are attached to, and protected by, a rib cage made out of bones. The rib cage is surrounded by muscles that, as they contract and relax, move the rib cage back and forth. This, in turn, makes the space in which the lungs sit expand and contract. There are two major phases of respiration—inhalation, the active intake of air into the lungs, and exhalation, the passive expulsion of air out of the lungs. The major muscles involved in respiration are the diaphragm, the intercostals (muscles between the ribs), the abdominal wall muscles, and some neck, upper back, and chest muscles (sternocleidomastoid, trapezius, and pectorals) (Figure 3-1). 23

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INTERCOSTAL MUSCLES WINDPIPE

LUNG

RIBS

DIAPHRAGM MUSCLE

Figure 3-1 The respiratory system. Reprinted with permission from the Paralyzed Veterans of America (PVA), 801 18th Street, NW. Washington, DC 20006. Phone: (202) 872-1300. Email: [email protected]. Web site: www.pva.org. Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury (3rd Edition), © Paralyzed Veterans of America, 2000.

The diaphragm is a large dome shaped muscle located between the base of the lungs and the abdomen. It is made up of right and left halves, the hemidiaphragms. It is innervated by the phrenic nerve, which originates from the third to fifth cervical levels of your spinal cord, corresponding to the middle of the neck. As it contracts, the diaphragm flattens and pushes the abdominal organs—the stomach, intestines, liver, and spleen—downward. This enlarges the space in the middle of your chest where the lungs sit, allowing them to expand. When the lungs expand, a negative pressure system is created that “sucks” the air in. This is inhalation.

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Chapter 3 The Respiratory System | 25

In exhalation, the diaphragm relaxes and regains its dome-shaped configuration. This pushes the lungs in an upward direction, thereby decreasing the space where the lungs sit and forcing the air out of the lungs. This process is passive and does not require any additional work from you. The diaphragm is the most important muscle of respiration, but when it is paralyzed, the sternocleidomastoid, scalenes, trapezius, and pectoral muscles, which are located in the neck, upper back, and chest and normally assist in the process of inhalation, often become the primary muscles of inspiration. The scalenes are innervated by nerves that originate between the fourth and eighth cervical levels. These correspond to the middle and lower parts of your neck. The trapezius and sternocleidomastoid are innervated by the eleventh cranial nerve. The intercostal and abdominal muscles are important when a forceful exhalation is needed, such as when you are coughing. Coughing is an important protective reflex, because it forcefully removes debris and other unwanted materials that enter the lungs. A good coughing mechanism also aids the removal of mucus inside your lungs. The abdominal muscles are innervated by nerves that originate between the sixth thoracic level and the first lumbar level of the spinal cord. These correspond to the middle of the back. Inhalation and exhalation is carefully orchestrated by a part of your brain known as the medulla. The medulla receives information about the content of oxygen and carbon dioxide in your blood and, based on this and other information collected via nerves from the lungs, it can speed up or slow down the rate of your breathing. Under normal conditions you are not even aware of this process. However, you can also actively control the rate and depth of your breathing if you need to do so (for example, to blow air into a balloon). Inside the lungs is a large network of tubes of different sizes. The trachea is the main air passage in your throat. It carries air from your nose and mouth into the lungs. The bronchi are major branches emanating from the trachea. The bronchi give rise to a vast network of tubes known

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as the bronchioles, which have an inner lining made up of muscles and cells that make mucus. Mucus is an important defense mechanism for your body. Potentially harmful debris and bacteria from outside the body get trapped in it and then are removed from the lungs via an internal escalator made up of fine hair-like projections, known as cilia, that brings the debris to your throat where you swallow or expel it. As mentioned above, the removal of mucus is aided by a strong cough. The muscles inside the walls of the bronchi can contract, making the space inside them smaller, and they can relax, enlarging the space inside them. This is important because some medications used to treat lung problems work by making these muscles relax. The deeper you go inside the lungs, the smaller and narrower the tubes get. These smaller tubes, or bronchioles, also have muscles in their walls. Eventually the bronchioles open up into air filled sacs known as alveoli, and it is here that the process of air exchange occurs. The alveoli walls are lined with small, fine blood vessels known as capillaries. Oxygen passes from the alveoli through the alveolar walls into the capillaries and binds to red blood cells. These same red blood cells release carbon dioxide into the alveoli to be carried out of the lungs through the same network of tubes.

WHAT HAPPENS IN THE NORMAL AGING PROCESS? As the non-SCI person gets older, several changes to the respiratory system occur. The rib cage and chest wall stiffen, the skin surrounding the chest wall loses its elasticity, and there is a loss of muscle fiber in large muscles. These changes affect respiration, because the lungs have more difficulty expanding and recoiling against the stiff chest wall. There are changes inside the lungs, as well. The total number of alveoli decrease, and the remaining alveoli increase in size. This has a negative effect on the exchange of carbon dioxide for oxygen at the alveolar level. Other changes such as obesity, stooped posture (kyphosis), and smoking can also make the respiration process more difficult. The toxins in

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cigarettes irritate the structures of the lungs, including the cilia, so it becomes more difficult to get rid of mucus inside the lungs.

CHANGES IN THE RESPIRATORY SYSTEM ASSOCIATED WITH SCI Many of the pulmonary problems associated with SCI are due to the loss of respiratory muscle function. Depending on the level of injury, one or more key muscles may be paralyzed or significantly weakened, putting pressure on the remaining muscles to act as substitutes. If they are unable to do so, a mechanical ventilator may be necessary. If your injury was at the L1 level of the spinal cord or lower (low back), you have an intact diaphragm, abdominal muscles, intercostals muscles, and accessory muscles (sternocleidomastoid, trapezius, scalenes). Consequently, it is unlikely that you will have more respiratory problems than your non-SCI counterpart. If your injury was between T1 and T12 (mid to upper back), your abdominal and intercostal muscles are weakened. As a result, your cough and forced exhalation are weaker, so you may have difficulty expelling debris and other materials that enter your lung; however, inhalation is largely unaffected. An injury in the neck between C5 and C8 significantly affects breathing, because the abdominal and intercostal muscles are either completely paralyzed or profoundly weakened. The only way to remove exhaled air from the lungs is through the passive movement of the rib cage when the diaphragm relaxes, which may not be enough to expel all the air out of the lungs. An injury at the level of C4 affects the diaphragm’s function, and the only fully operational respiratory muscles still present are the accessory muscles of the neck. As a result, even quiet respiration may be difficult, because the lungs cannot expand and recoil well if the diaphragm does not contract and relax well, so air exchange is compromised. Injuries above the C4 level need mechanical ventilator assistance for breathing.

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WHAT ARE THE MAJOR RESPIRATORY COMPLICATIONS ASSOCIATED WITH SCI Four major problems of the respiratory system are associated with SCI— clearing secretions, collapse of lung space at the base of the lungs, decreased movement of air inside the lungs, and a poor cough. Atelectasis is the term used to describe a pocket of collapsed lung. It is usually present at the bases of the lungs and is associated with an inability to inhale deeply and cough effectively. Collapsed lung spaces can block bronchioles, causing mucus to build up behind the blockage and become a source of lung infection (pneumonia). Such a pocket of infected material inside the lung is called an empyema. Symptoms of a pneumonia include fever, chills, cough, shortness of breath, and a general feeling of weakness. If you experience symptoms such as these, you should let your doctor know at once. Atelectasis can also lead to a collection of fluid between the base of the lung and diaphragm known as a pleural effusion. Atelectasis can be prevented by taking deep breaths. However, if your SCI was in the upper part of the neck, this is hard for you to do effectively on your own. In that case an Intermittent Positive Pressure Breathing Machine (IPPB) can be of help. This machine can be used to deliver large volumes of air at pressures that are initially low, and that are gradually increased to as much as you can tolerate through a technique known as IPPB “stretch.” This technique can not only expand the lung, but can also be used to deliver medications directly into the lung when needed. Respiratory problems can also be due to intestinal problems. The intestines sit inside the abdomen, and if you are significantly constipated, the loops of bowel are bigger due to the blockage. This can put upward pressure on the diaphragm that, in turn, can limit the expansion and passive recoil of the lungs. Other problems that can affect respiration include spasticity of the abdominal wall muscles and stooped posture. Spasticity is a common

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problem associated with SCI. It can affect all muscles below the level of the injury, including the abdominal muscles. Spasms of the abdominal muscles can impair inhalation and exhalation, so tell your doctor if you are experiencing them. A stooped posture is also common after SCI due to paralysis of the key muscles that hold up your trunk. It may also result from poor seating in your wheelchair. Stooped posture affects inhalation by limiting the amount of air that you can inhale and interfering with the diaphragm’s ability to contract in an effective manner. As a result, you take small shallow breaths that cannot maintain adequate expansion of the bases of your lungs. This could lead to collapsed lung spaces at the bases (atelectasis). Smoking can also impact negatively on an already compromised respiratory system in SCI. As mentioned earlier, the toxins can affect removal of mucus as well as harm the structures inside the lungs. If you have a SCI, you should not smoke!

COMMON MEDICATIONS USED TO TREAT RESPIRATORY PROBLEMS ASSOCIATED WITH SCI The medications commonly used to treat respiratory problems associated with SCI are designed to address two main problems—secretions and narrowed airways. Mucolytics help to break up mucus so that it can be removed with greater ease. Mucomyst® (acetylcysteine) is one such an agent. It can be introduced into the lungs through a nebulizer. However, it can cause the tubes inside the lungs to contract, thereby narrowing their diameter and so making it difficult for air and mucus to move through the tubes. Cromolyn is a medication that can be used to soften secretions so that they can move more easily. Theophylline has three main functions. First, it helps to relax the muscles in the walls of the bronchi and bronchioles, thereby increasing their diameter. This helps makes it easy for air and mucus to move through them. Secondly, it stimulates the diaphragm to have stronger contractions which, in turn, aids inhalation. Lastly, it helps stimulate the

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release of surfactant, a substance produced by cells lining the alveoli that helps protect the lungs from injury. Salmeterol and albuterol are often used to reduce inflammation and stimulate secretion of surfactant. Inhaled steroid medications have very potent anti-inflammation properties, but they can also predispose to infections of the lung. Antibiotics are used to treat bacterial infections in the lungs. These are powerful drugs, and they should be used only when needed. You should never take an antibiotic as a way to “prevent” infections or in any unwise manner, since this could result in your developing an infection that is resistant to most antibiotics. Fortunately, most SCI patients use antibiotics wisely, so this does not happen very often, but even so, antibiotics have side effects. In some cases they can irritate the intestines causing diarrhea and abdominal discomfort.

MECHANICAL VENTILATORS AND RESPIRATORY FAILURE If your SCI was in the upper part of your neck (above the fifth cervical level), your chance of requiring mechanical ventilation increases significantly. The way to try to avoid the need for a mechanical ventilator is to successfully manage the secretions that accumulate in your lungs, develop as strong a cough as you possibly can, and be vigilant for the possibility of an early pneumonia. Unfortunately, even despite these efforts, you still may eventually need a mechanical ventilator. The main reasons for requiring mechanical ventilation are as follows: ■

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You are not able to exchange oxygen and carbon dioxide in an efficient manner, so you are not delivering an adequate amount of oxygen to your body and vital organs; In spite of all your efforts, you are still not able to clear your secretions;

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In spite of all your efforts, you are still not able to adequately expand the collapsed parts of your lungs (atelectasis), which can lead to pneumonia.

A mechanical ventilator is a machine that delivers air directly into your lungs. The air can be delivered either invasively (a tube through a hole in your trachea) or non-invasively (through an adaptive device in your mouth or nose). If your physician chooses the invasive route then he may recommend that you undergo a surgical procedure known as a tracheostomy, an opening created directly into your trachea, which is located in your neck. The recommendation is usually made if you are at risk for aspiration (food material or stomach contents entering your airway passages. Aspiration can be potentially dangerous, because it could cause an infection in your lung known as aspiration pneumonia, and the material you breathe in can also cause direct injury to the lung itself. If you are not at risk for aspirating, a non-invasive mechanical ventilator can be considered. The advantage of this type of ventilator is that it does not introduce a foreign object into your trachea that could cause injury to the trachea itself as well as potentially lead to infections. In addition, there is a higher likelihood of being discharged home with a noninvasive mechanical ventilator. Mechanical ventilators are programmed to deliver air at a set frequency, flow rate, and volume. As your condition improves, your physician will decide if you can be “weaned” off the mechanical ventilator. It is easier to be removed from a ventilator if your level of SCI is in the lower parts of your neck or below. The weaning process involves spending more and more time off the ventilator and monitoring your progress. Initially, you will be lying on your back in bed. If you tolerate this well, you will gradually move to a seated position in a chair. It is easier to wean when lying on your back than sitting, because when you are on your back, the diaphragm is in a position that is more conducive to effective contraction.

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If weaning is not an option, you may get comfort from knowing that people who are dependent on mechanical ventilators don’t assess the quality of their lives as significantly lower. Of course, a supportive, caring family and friends are of great benefit.

RESPIRATORY PROBLEMS DURING SLEEP IN SCI Problems with breathing during sleep are very common in people with SCI. The cause is not quite clear, but it is believed that a high level of SCI, obesity, certain medications used for spasticity, or pain may be contributing factors. Symptoms include daytime drowsiness, snoring, stuffy nose, and poor judgment. Tell your doctor if you are experiencing any of these symptoms. He might want to order some tests to check your breathing at night. Treatment options include medications for the nasal stuffiness, anti-depressants, and theophylline.

RECOMMENDATIONS If you are tetraplegic (the SCI affected both the arms and legs), you are always at a high risk of respiratory problems. You should be aware that even a seemingly minor infection in your lungs has the potential to overwhelm your respiratory system, leading to a rapid deterioration and the possible need for a mechanical ventilator. In the remaining part of this chapter, I will discuss some recommendations that can help you take better care of your lungs. ■

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Stop smoking! It merits repeating. In addition, avoid being in environments where there is smoking. Second-hand smoke is also dangerous. Avoid living in areas where air pollution is a problem. Lose weight. One of the many benefits to your health from maintaining an ideal body weight is greater ease in breathing, because

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there is less strain placed on the diaphragm and other key muscle groups. Reassess your wheelchair’s seating system. An inadequate wheelchair seat can aggravate an existing stooped posture (kyphosis), and this can make breathing more difficult. Consider an abdominal binder. If you are tetraplegic, gravity causes the contents of your abdomen to sag downward when you sit in your wheelchair. This, in turn, creates a downward pull on the diaphragm, and the traction on the diaphragm puts the lungs at a mechanical disadvantage for inhalation. An abdominal binder might be of help in this case. Be vigilant about treating lung infections early. The symptoms of a lung infection may be difficult to identify early on in the disease process. Watch out for fever, chills, cough, increased spasms, and a general feeling of weakness, and report any of these symptoms to your doctor as soon as possible. Get an annual flu shot. If your doctor recommends it, get an annual influenza vaccine. Re-assess your bowel program. Enlarged bowel due to chronic constipation can place upward pressure on the diaphragm, thereby making it more difficult to breathe. Speak to your doctor about whether adjustments need to be made to your current bowel program. Treat spasticity of the abdominal and chest wall muscles. Speak to your doctor if you notice muscle spasms in your abdomen or chest wall, because these can affect your breathing. Currently, there are several medications available to treat spasticity. Take deep breaths. Practice taking deep breaths instead of shallow ones. Deep inhalations help to prevent atelectasis. Blowing up balloons is a good exercise to strengthen the muscles you use for respiration. Another involves using an incentive spirometer, a device specifically designed to improve inhalation. The incentive spirometer is basically a tube with markers on its side. You take

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a deep breath and then exhale into the tube, and the markers indicate how good your effort was. Continued effort helps you to obtain better values. Practice coughing. A weak cough can make it difficult for you to remove secretions from your lungs. One technique to improve your cough is called “quad coughing,” in which a therapist or a family member gives a thrust to the upper part of your abdomen at the end of a deep inspiration. There are some contraindications to this technique (for example, if you’ve recently had an Inferior Vena Cava Filter placed in the major vein located in your abdomen, or if you have fractured ribs). Your doctor or therapist can tell you if this technique is indicated for you. Try glossopharyngeal breathing. This involves swallowing multiple gulps of air in rapid succession, and is a breathing technique that can be used to improve your cough. Your therapist can teach it to you. Manage secretions. Your physical therapist can use many different techniques to help mobilize your secretions. Some common ones include chest clapping and vibration. Vibration can be accomplished by placing a mechanical vibrator on the chest, or manually, by the therapist. The quad cough described above can also be effective. All of these techniques can be taught to your family member or attendant. Suctioning can be used to remove secretions in the mouth or upper parts of the throat. This technique is especially useful if you have a lot of secretions, although it is reportedly not a very pleasant experience, and easiest when a tracheostomy is present. Use mechanical insufflation-exsufflation. In this technique, a machine delivers a fast deep breath of air inside the lungs, immediately followed by a fast deep removal of the air inside the lungs. It has been shown to be a very useful technique in clearing secretions (including large mucus plugs) from both lungs in people

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with weak coughs. However, it is contraindicated in people with certain heart or lung disorders. Your doctor can help you decide if this method of secretion clearance is good for you. Use an intrapulmonary percussive ventilator. This causes the lungs to vibrate several hundred times per minute while sending a deep breath, loosening up secretions. It can also be combined with medications that can go directly into the lungs. Use bronchoscopy. In this procedure, a probe is inserted into the tubes of the lungs in order to remove secretions. Work on strengthening the muscles used for breathing. There are several ways to strengthen your respiratory muscles. Weights placed on the abdomen can help to strengthen respiratory muscles by making the muscles used in inhalation work harder. Resistive devices that can be adjusted so that you have to use a progressively greater effort as you breathe in are used to help strengthen inhalation muscles as well. Talk to your therapist.

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The key muscles of respiration are the diaphragm, intercostals, abdominal wall muscles, and the accessory muscles (sternocleidomastoid, scalenes, trapezius, and pectorals). Depending on your level of injury, one or more of the above mentioned muscle groups may have been impaired, thereby affecting your breathing. The higher your level of SCI (middle of the neck or higher), the more significant your impairment, because of a direct weakening of the diaphragm. The major problems of the respiratory system in SCI are: ■ Managing secretions ■ Collapsed parts of lungs (atelectasis) ■ Weak cough Atelectasis and poorly managed secretions are predisposing factors for a lung infection (pneumonia).

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Pneumonia is the leading cause of death in patients with SCI. Management of secretions can be accomplished by medications, mechanical devices, physical therapy techniques (vibration, chest clapping), and invasive procedures (bronchoscopy). The risk of atelectasis can be minimized by strengthening your cough (exercises to strengthen inhalation muscles), and mechanical devices, including ventilators.

References Peterson WP, Kirshblum S. “Pulmonary Management of Spinal Cord Injury.” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:135-154. Wilmot CB, Hall KM. “The Respiratory System.” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications 1993:93-104.

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4 The Gastrointestinal System

The role of the gastrointestinal system (GI) is to digest food and absorb it into the body. After SCI, some aspects of GI function remain the same, while others are profoundly affected. This chapter first reviews the normal anatomy and physiology of the gastrointestinal system, then describes some of the GI challenges faced by the person living with SCI and offers ways to address them. A good resource is a booklet published by the Paralyzed Veterans of America (PVA), Neurogenic Bowel: What You Should Know–A Guide for People with Spinal Cord Injury. It describes in straightforward language the practical aspects of good bowel care following SCI.

ANATOMY AND PHYSIOLOGY OF THE GI SYSTEM The GI tract is made up of the mouth, esophagus, stomach, small intestine, large intestine, rectum, and anus (Figure 4-1). Food enters the mouth and is ground into small pieces by your teeth, thus making it easier for digestive enzymes to break it down further in the stomach and small intestine. Saliva secreted by glands in and around your mouth facilitates this process by helping to moisten the food. The food then travels through your esophagus, and as it makes its way closer to the stomach, a 37

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MOUTH

ESOPHAGUS

STOMACH LARG INTESTINE (ALSO CALLED BOWEL OR COLON) SMALL INTESTINE

RECTUM

ANUS

Figure 4-1 The gastrointestinal system. Reprinted with permission from the Paralyzed Veterans of America (PVA), 801 18th Street, NW, Washington, DC 20006. Phone: (202) 872-1300. Email: [email protected]. Web site: www.pva.org. Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury (3rd Edition), © Paralyzed Veterans of America, 2000.

sphincter (valve) between these two structures relaxes, allowing the food to enter your stomach.

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Chapter 4 The Gastrointestinal System | 39

Inside the stomach, the food gets broken down further by the contractions of the muscles in the stomach walls, aided by an acidic substance released by the stomach. Sphincters at the connections to the esophagus above and the small intestine below keep the partially digested food inside the stomach until the small intestine is ready to receive it. The broken down food next enters the small intestine, a very long tube in which food is broken down into nutrients that are subsequently absorbed. The pancreas secretes digestive enzymes into the small intestine that help to break down fats, proteins, and starches. The liver makes bile, which helps break down large fatty substances. (When bile is not actively being used it is stored in the gallbladder.) The nutrients produced by this process get absorbed by blood vessels in the walls of the small intestine, which subsequently transport them throughout the body. Following digestion in the small intestine, residual material passes into the large intestine. The large intestine is made up of three sections— ascending colon, transverse colon, and descending colon. The main functions of the large intestine is to absorb water and store wastes (feces) until it is time for them to be released. It takes approximately 12 to 24 hours for material in the large intestine to move all the way to the rectum. Certain reflexes stimulate the colon to move its contents faster. Reactions to the ingestion of food or to the insertion of a finger or a suppository inside the rectum are such reflexes. They are known as the gastrocolic and rectocolic reflexes respectively. The feces enter the rectum and from there are evacuated via the anus. The anus has two sphincters—one internal and the other external. The internal sphincter is involuntary, which means it cannot be controlled. It remains closed for most of the day, keeping the feces inside the body. The external sphincter is voluntary and so it can be controlled. Defecation is the act of evacuating stool from the body. When stool enters the rectum, it puts pressure on the rectal wall, thereby stretching it. That distension triggers a reflex that relaxes the internal sphincter, and stool moves forward. However, evacuation of the stool can still be pre-

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vented by tightening the external sphincter. Once that sphincter is relaxed, the fecal material is eliminated. The walls of the GI tract are made up of several layers. Some layers have muscles, whereas others have cells that secrete substances inside the tract. Food and waste products are propelled from one part of the GI tract to the next by the contractions of these muscles. The GI tract also has its own nervous system. This system stimulates the muscles to contract and the cells to secrete substances that will be used to break down food into nutrients. The GI tract can function independently. You don’t tell your body to digest food. It does this automatically. The brain controls some of the body’s automatic functions via involuntary nervous systems that run throughout the entire body—the sympathetic and parasympathetic nervous systems. The sympathetic nervous system (SNS) can also be called the “fight or flight” system. For example, if someone was chasing you, your body would respond by increasing your heart rate and your breathing rate and not concentrate very much on what your intestines were doing. The SNS tells your intestines that you have to expend more of your energy running. It does this by slowing down the muscle contractions in the walls of the GI tract, stopping the secretions and tightening up the sphincters. The parasympathetic nervous system (PNS) is more interested in “housekeeping.” This means that, with respect to the GI tract, it wants your body to focus on digestion once the danger is over. Therefore it instructs your GI tract to increase and speed up its muscular contractions and secretions and relax the sphincters. Normally, there is a constant interplay between the GI tract’s own nervous system, the SNS, the PNS, the muscles in its walls, and the secretory cells. Depending on the particular needs, one will take precedence over another.

CHANGES IN THE GI SYSTEM AFTER SCI The GI system can function fairly well even after SCI. Food gets broken down into nutrients and waste products. The muscles of the GI tract

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walls contract and propel partially digested food matter forward. Digestive enzymes are secreted by the pancreas and liver. Water is absorbed from the colon. However, there are two major changes after SCI. First, there is a generalized slowing of the movement of fecal material inside the colon, which can cause constipation. Second, there is a loss of control over the voluntary external anal sphincter, and an inability to sense the presence of fecal material, which can cause accidental elimination of fecal matter at socially inappropriate times. Concerns about gastrointestinal function are often raised by people living with SCI. Many people living with SCI indicate that they restrict activities of daily living due to fear of accidental bowel movements in public. They also spend a considerable amount of time on their bowel care (greater than one hour a day). This is especially pronounced in people with tetraplegia, in which all four limbs have limited movement.

Things You Should Tell Your Doctor about Your Bowel Care Your doctor or nurse will be interested in the following: ■

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How much time does it take you to have a bowel movement once you start the bowel routine? What techniques and medications do you commonly use to induce a bowel movement (i.e., digital stimulation, suppository, laxatives…). How often, and at what time of day, do you have an unwanted bowel movement (accident)? What is the stool consistency—is it soft, hard, watery…? Is there any blood in the stool? Do you perform your bowel routine in or out of bed?

GI Problems Seen after SCI ■

Acute abdominal problems. Abdominal problems following SCI are challenging for you and your doctor due to the fact that you

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may have an altered or lack of sensation. You may not realize you have a problem, because the typical signs are often absent. This can potentially delay treatment. Some symptoms that you should tell your doctor about include constipation, spasms in the muscles of your abdomen, new pain at the tip of your shoulder, and a bloated feeling in your stomach that is associated with pain. Stomach ulcers and irritation of the stomach wall (gastritis). Gastritis is an irritation and inflammation of the inner lining of the stomach. An ulcer is an actual hole in the stomach wall. There appears to be a greater risk of these conditions if you have a high level of SCI, and while they are more common in someone with a recent SCI, they can also be seen in people many years after their injury. Hemorrhoids. The daily bowel routine can cause trauma to the anus and rectum, causing hemorrhoids. This is a very common problem in people living with SCI. The most frequent presenting sign is bleeding from the rectum. Trauma to the rectum can also lead to its constant secretion of fluid, which can irritate the skin around the anus and buttocks. Hemorrhoids are typically treated with hydrocortisone suppositories. If they are large, certain corrective procedures may be indicated. A word of caution: Not all rectal bleeding is due to hemorrhoids. Your doctor may want you to undergo a colonoscopy to check for colon cancer. A colonoscopy is an invasive procedure in which a probe with a camera attached at one end is used to look at the inside of your colon. A colonoscopy is recommended every three to five years if you are older than 50 years of age or have a family history of colon cancer. It is still unclear if SCI puts you at greater risk of colon cancer, but screening is a good prevention. Gallstones are common after SCI. The exact cause is unknown but experts think they might be due to slowed contractions of the

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gallbladder. This, in turn, causes the bile that is stored in the gallbladder to crystallize. Gallstones can block the flow of bile out of the gallbladder and can cause infections. Constipation is a major problem due to many factors, including the slowed fecal movements through the colon, side effects from medications commonly used after SCI, and limited mobility. Superior mesenteric artery syndrome. This is a condition where a part of your small intestine, the duodenum, is compressed between an artery, known as the superior mesenteric artery, and the front of your spine. As a result, a blockage occurs in that part of the small intestine. This condition is usually seen in people who have been in bed for a long time and have also lost a great deal of weight. Common symptoms include nausea, vomiting, and a swollen abdomen. The treatment includes sitting up in bed or lying on your left side, gaining weight, and perhaps an abdominal corset.

THE BOWEL PROGRAM The goal of a successful bowel program is a predictable, accident-free routine that can be accomplished in a timely fashion (less than one hour). This would enable you to carry on your daily activities, including socializing, without the fear of an embarrassing episode. Ideally, you should have a bowel movement each day or every other day. You should assess your daily activities to determine the best time for a bowel routine. Many people living with SCI opt for a morning or evening routine so that it doesn’t interfere with their daily schedules. The bowel routine is typically performed sitting or lying on your right side in bed. Be patient, and give yourself several days with a set routine to see if it helps. Medications have often been used to establish and maintain a bowel program. These medications can be divided into five basic types—stool softeners, bulk forming agents, colonic stimulants, and colonic irritants.

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Stool Softeners Stool softeners (such as Colace®) work by increasing the water content inside the stool and decreasing the absorption of water out of the colon. Fiber preparations such as Metamucil® increase the bulk of the stool. This is important because it in turn helps to distend the wall of the rectum and colon, thereby stimulating contractions of those structures and helping to propel stool forward. Interestingly, a high fiber diet has not been found to help very much with the bowel program in people living with SCI. Stool softeners and bulk forming substances need an adequate amount of water each day. Some experts recommend two to three liters per day. However, you should talk to your doctor about this, because you may have a medical condition that may require that you restrict your fluid intake. Senna (Senekot®) is a colonic stimulant. It works by stimulating the nerves inside the colon wall, causing them to contract. It is typically taken about 6–12 hours before an anticipated evacuation. Therefore, if you would like a morning bowel routine, take it the previous evening. If you prefer an evening routine, take it in the middle of the day. However, taking senna for long periods of time can impair the colon’s ability to adequately contract. There are other similar acting agents, such as Reglan®, but their usefulness for bowel management after SCI has not been established. Dulcolax® is a contact irritant that works by irritating the inner surface of the colon wall, stimulating colon muscle contraction and movement of its contents. It can be taken by mouth or used as a suppository or enema. Other enema preparations include Theravac® and Fleet®. Enemas should be used sparingly because they can cause trauma to the rectal area. The area should be cleaned of stool before applying an enema to the rectum in order to permit the agent to reach the wall of the bowel. Glycerin suppositories also work as a colonic wall irritant, and are reported to also act as a lubricant. Laxatives act by stimulating fluid release into the small intestine. This in turn stimulates the colon to contract its muscles and propel its contents forward. Some common examples of laxatives are Milk of

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Magnesia® and magnesium citrate. It is recommended that laxatives not be used excessively. The finger can also be used to stimulate the colonic wall to contract by taking advantage of the rectocolic reflex. Obviously, you need adequate hand function to perform this. You may want to discuss it with your nurse or doctor. Last, for the person who has tried all bowel techniques without success, a colostomy can be of benefit. A colostomy is an opening on the surface of the skin that leads to a part of your colon and so allows stool to completely bypass your rectum and anus. Instead, the stool empties directly through the opening (also known as a stoma) into a bag that is then emptied. The advantage to this procedure is that it eliminates the need for a bowel routine. The disadvantages are that it requires a surgical procedure; it results in a change in the appearance of your abdomen, and it requires that you wear a colostomy bag. Your doctor can provide you with more details about this option and help you decide whether it is right for you.

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The major gastrointestinal changes encountered after SCI are a slowed movement of fecal matter through the colon and a loss of control over the external anal sphincter. Common GI problems encountered after SCI include constipation, hemorrhoids, and gallstones. Acute abdominal emergencies are often tough to detect in people living with SCI due to diminished or absent sensation in the abdomen. Abdominal spasms, pain in the tip of the shoulder at rest, abdominal bloating, and pain are all signs to watch for. The goal of a good bowel program is a predictable, accident free routine that can be accomplished in less than one hour. The frequency of bowel movements should be daily or every other day. Common approaches to developing a bowel program include proper diet, adequate fluid intake, finger stimulation of the rec-

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tum, and medications, if necessary. Medications can be divided into five basic types—stool softeners, bulk forming agents, colonic stimulants, and colonic irritants. If you are over the age of 50, it is important to have a colonoscopy every three to five years to screen for colon cancer. If constipation is a problem, speak to your doctor about eliminating or substituting medications that have this side effect. One such example is narcotic medications which are commonly used for pain management but can be quite constipating. Try to limit the use of enemas and medications that work by irritating the bowel wall. If you make changes in your bowel care, make them one at a time, then wait about one week to see if they are working. Some other useful recommendations mentioned in the book Neurogenic Bowel: What You Should Know, published by the Paralyzed Veterans of America include: ■ Set up your bowel routine at the same time of day—be it mornings or night. ■ Try to schedule your bowel routine following a meal. The ingestion of food stimulates a colonic reflex that helps eliminate stool stored in the rectum. ■ “Sitting upright in a cushioned commode chair or padded toilet seat may help gravity to empty the lower bowel.” This should be attempted if you have good trunk and arm control, otherwise an assistant will be necessary. Always remember to perform pressure relief when sitting for a long period of time (i.e., every 30 minutes). Also check the seat cushion regularly for any cracks. ■ Rubbing your abdomen can also help stimulate movements inside your colon. ■ A “Bowel Care Record” can be very helpful to keep track of the effectiveness of your bowel routine.

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Even if you do not have the necessary arm strength and body stamina to be completely independent in your bowel routine, you should still be able to instruct your caregiver on how to correctly perform bowel care for you. A diet that is high in fiber helps to maintain a soft stool consistency. Talk to your doctor, nurse, or a nutritionist about how much fiber you should have in your diet. Remember to drink plenty of fluids with a high-fiber diet however, talk to your doctor first if you are on a fluid-restricted diet. Keep caffeine products to a minimum. This includes tea, soda, and coffee. Caffeine can make you urinate more frequently, thereby depleting fluids from your body. Try to reduce foods that can cause gas such as beans, broccoli, or onions. Just in case you have an accident…be prepared! Have a bag with some spare clothing and moist towels to clean yourself. Let your doctor know right away if there is a change in the color of the stool (red, black…). These may indicate blood loss from your intestines.

References Chen D, Nussbaum SB. “Gastrointestinal Disorders.” In: Kirshblum S et al ed., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:155–163. Cosman BC, Stone JM, Perkash I. “The Gastrointestinal System.” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications, 1993:117-127. Groah, SL, Stiens, SA, Gittler, MS, Kirshblum SC. “Preserving Wellness and Independence of the Aging Patient with Spinal Cord Injury: A Primary Care Approach for the Rehabilitation Medicine Specialist.” Arch of Phys Med Rehabil 83:S82–89,2002. “Neurogenic Bowel: What You Should Know: A Guide for People With Spinal Cord Injury.” Washington DC, Paralyzed Veterans of America, 1999.

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5 The Urinary System

This chapter will discuss: a) the anatomy of the kidney and bladder system, b) the impact of a spinal cord injury on this system, c) common problems associated with an aging kidney and bladder system in a person living with SCI, and d) recommendations on how to successfully manage your bladder function as you get older. The urinary system is made up of an upper and a lower part (Figure 5-1). The upper part consists of the kidneys and ureters. The kidneys filter your blood and remove impurities and waste products, and are responsible for making the urine. The ureters are tubes that connect the kidneys to the bladder. The lower part of the urinary system consists of the bladder and the urethra. The bladder stores the urine before it is released from the body. It has two sphincters at its connection to the urethra. These sphincters act as faucets. When they are closed, urine is stored in the bladder; when they are open, the urine is released into the urethra. The urethra is the tube through which the urine is expelled from your body. In a man, the urethra is located inside the penis. The flow of urine is highly regulated in the non-SCI person. The kidneys produce urine, which flows through the ureters into the bladder. As the urine fills the bladder, it in turn expands to accommodate the 49

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PELVIS OF KIDNEY

PELVIS OF KIDNEY

URETER

BLADDER URETHRA

URETHRAL OPENING (MEATUS)

URETER

BLADDER NECK BLADDER

EXTERNAL URETHRAL SPHINCTER PENIS

URETHRA

URETHRAL OPENING (MEATUS)

Figure 5-1 Male/female urinary system. Reprinted with permission from the Paralyzed Veterans of America (PVA), 801 18th Street, NW, Washington, DC 20006. Phone: (202) 872-1300. Email: [email protected]. Web site: www.pva.org. Yes, You Can! A Guide to Self-care for Persons with Spinal Cord Injury (3rd Edition), © Paralyzed Veterans of America, 2000.

fluid. The sphincters remain closed during the inflow of urine to prevent leaking. Nerves located in the bladder wall send messages to the brain telling it when it is full or almost full. Once the bladder is full, the brain in turn sends messages to the bladder via the spinal cord, telling it to contract. At the same time it sends messages to the sphincters telling them to open. The contraction of the bladder must occur at the same time that the sphincters are open in order for the urine to be expelled. This is a highly coordinated action that requires a well-functioning brain, spinal cord, bladder, and sphincters. After a spinal cord injury, the connections between the brain and the spinal cord are severed. This results in a loss of the coordination and communication between all the involved structures. Some of the possible end results of this disconnection are a spastic bladder wall and spastic sphincters that contract on their own without normal controls. When the bladder wall contracts irregularly and the sphincters are open, urine is constantly released and leaking (incontinence) results. A

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Chapter 5 The Urinary System | 51

sphincter that is in a state of constant contraction is analogous to a closed faucet, and it makes the release of urine from the bladder more difficult. The bladder has to contract harder to open the sphincters and expel the urine, which results in abnormally high pressures inside the bladder. After SCI, it is common for both the bladder wall and the sphincters to be in a state of constant uncoordinated contraction. It is difficult to expel urine, which then may stay in the bladder longer than necessary. This can lead to both infections and kidney stones. In addition, because a great deal of pressure is generated inside the bladder, the urine may be forced upwards through the ureters into the kidneys, thus damaging them—damage to the kidneys was a major cause of death among people with SCI until medical advances and improved management techniques brought this problem under better control. With the use of medications and catheters, the incidence of damage to the kidneys has decreased considerably. Medications work by relaxing the bladder wall and/or the sphincters so that they don’t constantly contract. Inserting a catheter inside the relaxed bladder several times a day (intermittent catheterization) empties it of urine. Obviously you need to have very good hand function and eyesight to accomplish this task. This technique has helped many people with SCI avoid significant kidney problems and live longer, healthier lives. Alternatively, a catheter can be inserted inside the bladder and left in place for a long period of time. This indwelling catheter is periodically removed and changed, usually about once per month.

AGING AND THE KIDNEY–BLADDER SYSTEM In older individuals without spinal cord injury, the bladder can develop a decreased capacity to store urine, and may have more spontaneous contractions as well. In men, the prostate gland surrounds a part of the urethra. As a man gets older, the prostate often becomes larger and may put pressure on the urethra and limit the flow of urine outside the body. This can lead to the

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retention of urine inside the bladder. The prostate can also become infected, which can also lead to urinary tract infections. There is also an increased risk of prostate cancer with aging, a condition that can also place increased pressure on the urethra. As we get older, our ability to tolerate certain medications decreases, and we are more prone to their side effects, some of which can be dangerous. Some antibiotics used to treat urinary tract infections can lead to diarrhea and other significant problems associated with the digestive system.

AGING WITH A SPINAL CORD INJURY Many of the bladder problems seen in people living with SCI are related to the use of catheters. Self-catheterizing on a daily basis for many years can cause injury to the urethra. An enlarged prostate can also make it more difficult to insert a catheter. An indwelling catheter can also cause injury to the urethra (and the penis if you are a man) from the constant pulling on the tube that is connected to a leg or catheter bag. The indwelling catheter is also a source of infection and may increase the likelihood of developing bladder stones. Wearing a catheter over the penis (condom catheter) can irritate it and cause breaks in the skin. These in turn can become a source of infection. The incidence of bladder cancer is also increased from living with an indwelling catheter. Diminished vision and decreased ability to use the hands may cause more trauma to the urethra and penis if you are performing your own catheterizations. Having an aide perform the catheterizations is a solution, but this option is associated with an increased cost if you have to hire one, as well as a loss of independence. A spouse or significant other who had been performing these catheterizations for many years may not be able or willing to do them anymore due to their own health problems. Therefore you may have to resort to an indwelling catheter for your bladder management or, alternatively, surgical interventions.

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Medications commonly prescribed for relaxing the bladder and sphincter have side effects. For example, oxybutinin (Ditropan®) can cause blurry vision, dry mouth, drowsiness, and constipation. The bladder may not be able to release the urine, therefore causing a problem. Other medications that you should use cautiously include antiinflammatory drugs such as ibuprofen and naproxen, which can cause damage to the kidneys in high doses.

COMMON TESTS A DOCTOR PERFORMS TO CHECK KIDNEY AND BLADDER FUNCTION Several tests are currently used to check for injury to the bladder and kidneys. A urine test can be a useful tool to detect a urinary tract infection using a urine sample collected at the time of a catheterization. The urine is analyzed for the presence of bacteria and white blood cells that fight off infections. Protein count can also be a measure of the functioning of the kidneys. Blood in the urine sample can be an indicator of trauma to the urethra or bladder from catheterizations. It can also be an indicator of bladder cancer or stones, and it should be investigated. Several problems are associated with relying only on the urine sample for the above mentioned problems. Many people who have indwelling catheters or catherize themselves on a regular basis have bacteria in their urine samples. These bacteria are simply living there and are not causing any infections. This may be an incidental finding and not require antibiotics. The physician also relies on the number of white blood cells present in the urine sample in addition to the presence of bacteria, and correlates this finding with your symptoms. Fever, increased frequency of urination (or leakage between catheterizations), and increased spasticity are common symptoms of a urinary tract infection. The combination of these symptoms with the positive finding of increased white blood cells in the urine sample is often the reason for starting antibiotics for a urinary tract infection.

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A blood test can also be used to evaluate your kidney function. The indicators used are blood urea nitrogen (BUN) and creatinine. An elevation in these values may indicate a problem with your kidneys’ ability to function effectively. A 24-hour urine collection can also provide valuable information about your kidney function, by quantifying the amount of protein in your urine. An ultrasound exam is a painless test that examines your bladder and kidneys. It provides information about the size of the kidneys and the presence of bladder stones. Cystoscopy is an invasive procedure in which a physician inserts a tube with a camera at its end, through which she is able to see inside your bladder. This test is indicated if you had many urinary tract infections or blood was noted in your urine. It can be useful to check for bladder cancer and bladder stones. Suspicious cells can be removed and sent to a laboratory for analysis. Bladder stones can often be removed with the cystoscope. Another reason for having this test is if you are considering switching from an indwelling catheter to daily catheterizations. Your doctor may also recommend a renal scan for early detection of problems of the kidney. A urodynamic evaluation examines bladder and sphincter function as the bladder is gradually filled with fluid. A catheter is placed inside the bladder and salt water is inserted. From this test, the doctor can determine the amount of fluid that the bladder can accommodate before it starts to contract. This can be used to diagnose a spastic bladder. The test can also be used to determine the pressures generated by the bladder and the sphincters during voiding. It can also tell whether or not the bladder and sphincters are contracting in a coordinated or uncoordinated manner. Based on the test results, the physician may recommend a combination of medications and catheterization for bladder management. The urodynamic test can be repeated periodically to determine if the treatments are working or not.

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BLADDER MANAGEMENT TREATMENTS TO CONSIDER The types of bladder management to consider as you get older are broadly divided into two categories based on your ability to use your hands. In order to perform intermittent catheterization, you need good hand function, good vision, and limited spasticity of the muscles located on the inside of your thighs. Ideally, intermittent catheterizations should be performed 4–6 times per day. You should remove about 400 ml of urine each time. A small scanning device is currently available to help you determine how much urine is in your bladder at any given time (BladderScan-TM). Drinking fluid every day is important. The catheterizations are often combined with medications to relax your bladder. However, as mentioned earlier in this chapter, these medications have side effects, and you should tell your doctor if you are experiencing them. He can decrease the dose or try a different medication with fewer side effects. Recently, new medical treatments for bladder spasticity were introduced. In these treatments, medications can be directly inserted into the bladder. These medications have the advantage of reducing spastic contractions, while minimizing the side effects commonly associated with taking pills by mouth. Oxybutinin and capsaicin are some examples of these medications. An indwelling catheter is often indicated if you do not have good use of your hands. This has the advantage that you don’t have to worry about catheterizations several times each day, nor do you need to be concerned about limiting the amount of fluid that you drink. This can decrease the responsibilities of an attendant as well as the amount of work that your spouse or significant other has to perform. Many of the downsides to using an indwelling catheter have been described. There is an increased risk of trauma to the urethra, prostate, and penis as well as an increased risk of infections, bladder stones, and bladder cancer. However, many people with SCI successfully live with such a catheter. If you decide to use an indwelling catheter, your physi-

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cian may recommend that you also take a medication to reduce bladder contractions. The catheter itself should be changed about once each month. Some ways to reduce the risks associated with using an indwelling catheter are: a) taping the catheter tube to the thigh or abdomen, which reduces the traction on the penis and urethra, b) using a smaller, narrower catheter, c) draining the leg bag before it becomes full, which keeps the weight down so that there is less traction on the tube, d) keeping the catheter bag below the level of the bladder so that urine is not likely to flow into the kidneys and, e) cleaning the penis 2–3 times per day with warm water and soap. Suprapubic catheters are a good alternative if you have limited hand function and want to minimize some of the risks associated with an indwelling catheter. The catheter tube is placed directly into the bladder through an opening in the abdomen. The advantage to this type of catheter includes the lack of trauma to the penis or urethra. Sexual activity is also easier. Pressing on the lower part of the belly over the bladder can also help in emptying it of urine (the Credé technique). A condom catheter is worn and the urine is collected in a leg bag. Before using this technique it is often recommended that a urodynamic evaluation be performed to make sure that the sphincters are not very spastic; if the sphincters are spastic and closed, pressing down on the abdomen will not empty the bladder. The urine may actually be pushed up into the kidneys, thereby predisposing them to infections and malfunction. Some surgical techniques currently available include placing a small wire mesh tube known as a stent inside the external sphincter to keep it open. The downside to this procedure is that it makes wearing a leg bag a necessity, because the sphincters remain open. Advantages to this procedure include no fluid restrictions and a decreased need for attendant care. It is also reported to be reversible. If, for whatever reason, you are not happy with it, it can be removed, although not easily.

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The sphincterotomy procedure involves making cuts in the sphincter itself to keep it open. It has similar advantages to the stent. However, this procedure is irreversible and commits you to wearing a leg bag. Other surgical options include increasing the size of the bladder by attaching a piece of bowel to it, a procedure known as bladder augmentation. However, this is a formidable operation and it has potential complications such as stone formation and cancer. Another procedure, urinary diversion, involves attaching the ureters to a piece of intestine, which is then routed to a hole in the skin. Urine is therefore diverted through an opening in your abdomen and collected in a bag.

HOW TO MINIMIZE YOUR RISK OF URINARY TRACT INFECTIONS As mentioned earlier, it is important to minimize your risks of developing a urinary tract infection (UTI). There are several ways that you can accomplish this: ■

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Use good hygiene when inserting a catheter into the bladder. Some new catheters have an “introducer tip” and a self contained gel lubricant, which minimizes the risk of trauma to the urethra and external genitalia. This in turn can reduce the risk of infection (Hollister-Advance Plus Intermittent catheter-Incare, www.hollister.com). Catheterize regularly, to prevent urine from collecting too long inside your bladder. The longer the urine sits inside the bladder, the more likely that bacteria will grow and potentially cause an infection. If you have an indwelling catheter, change it periodically—typically every 2–4 weeks. Some new and innovative methods that have been recently developed include irrigating the bladder with antibiotics as well as colonizing the bladder with harmless bacteria that can help prevent the more dangerous types from thriving.

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KEY POINTS Below are some of the current recommendations of Dr. Linsenmeyer, an eminent SCI physician. Each person is different, therefore you should discuss your particular case with your doctor. ■

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Undergo annual ultrasound, blood/urine tests, and urodynamic studies. Have an annual cystoscopy if you have been using an indwelling catheter for a long period of time (i.e., several years). Stop smoking; bladder cancer has been associated with smoking. Screen for prostate cancer regularly, since the prostate can be traumatized from daily catheterizations over many years. Monitor yourself for side effects of medications and discuss them with your doctor. Use anti-inflammation medications (NSAIDs) sparingly; they can cause damage to the kidneys. Be careful with your technique when performing intermittent catheterizations; less trauma is better in the long run. Minimize your risk of developing urinary tract infections by utilizing good catheterization techniques and emptying your catheter bag on a regular basis. Don’t let urine sit in your bladder for too long before catheterizing.

References Charlifue SW, Lammertse DP. “Aging in Spinal Cord Injury” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:409–423. Groah, SL, Stiens, SA, Gittler, MS, Kirshblum SC. “Preserving Wellness and Independence of the Aging Patient with Spinal Cord Injury: A Primary Care Approach for the Rehabilitation Medicine Specialist.” Arch of Phys Med Rehabil 83:S82–89, 2002. Linsenmeyer TA. “Neurogenic Bladder Following Spinal Cord Injury” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:181–206. Lanig IS. “The Genitourinary System” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications, 1993:105–115.

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6 The Musculoskeletal System

Chances are that whether or not you push or have pushed a manual wheelchair after spinal cord injury, you probably have encountered some problem with your bones, joints, or muscles. In this chapter we will discuss the following: a) changes in bones, joints, and muscles that are associated with aging, b) common musculoskeletal problems encountered by people living with SCI, and c) recommendations for growing older with a relatively problem-free musculoskeletal system. As we all get older, gravity, time, and everyday stress take their toll on the musculoskeletal system. The cartilage located at the ends of long bones begins to show signs of wear and tear. This cartilage is important because it acts as a “cushion” at the point of contact between adjacent bones. When it breaks down, the bones at these joints do not move well. This abnormal movement leads to further breakdown of the cartilage as well as to the bones and joints themselves, which can subsequently lead to pain and loss of function. Not all joints are subject to this problem; some bones and joints are spared as we get older. However, the ones that seem to be at greatest risk for injury are the very same ones that we need the most every day.

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The knees are very important for walking. The degenerative process in the cartilage and bones associated with aging can lead to loss of motion in this crucial joint, often associated with pain. The vertebrae in the spine are separated from each other by discs made of a soft gelatin-like substance. As we age, these discs lose their water content and subsequently shrink in size and become stiff. The motion of our vertebrae depends on these discs maintaining their shape and elasticity. When that disappears, we lose motion in the spine and pain can develop.

CHANGES IN SPINAL CORD INJURY DUE TO AGING The aging changes described above also occur in people living with spinal cord injuries. However, the process is accelerated and degenerative changes can be seen earlier. The daily use of a wheelchair contributes to these degenerative changes. The human body was never designed to move by using the arms alone—legs were meant for that. Legs are longer, and have more powerful muscles and stronger joints, all of which are important for forward propulsion in space. Our arms were designed to allow the shoulders to position the hands so that they can manipulate objects in space. Legs move forward or backward in one plane, while arms move front, back, and sideways. Arms can reach behind your head or your back. Legs cannot do that. Your hand can grasp different objects such as an apple or a hammer. Fingers can be used to elicit beautiful sounds from a piano or a violin. In writing, they can be an instrument of the mind. Feet cannot do any of this, but they can support the weight of an entire body when standing, walking, or running. People living with a spinal cord injury often use their arms as a substitute for their legs. However, they are not very efficient substitutes because the functions that are asked of them are different from the ones

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Chapter 6 The Musculoskeletal System | 61

they were designed for. Arms can and do break down from overuse. This is manifested through pain and loss of motion. Other problems also affect the musculoskeletal system following SCI. For example, bones become thinner and brittle below the level of the injury. This is referred to as osteoporosis. This leads to a high and constant risk of fractures. In addition, contractures—stiffened joints that cannot be straightened out—can develop below the level of the SCI. Spasticity and paralyzed muscles increase the risk of contractures. Contractures can reduce the possibility of obtaining proper wheelchair positioning, which in turn can contribute to the development of curvatures of the spine; kyphosis (excessively stooped posture) and scoliosis (sideways curvature of the spine) are two examples of the types of curvatures that can occur. Functional implications are associated with these problems as well. For example, pain in the shoulder from an inflamed tendon or arthritis can limit the ability to use a manual wheelchair. This in turn can cause a person with SCI to become dependent on others for mobility.

THE SHOULDER The shoulder deserves special mention since it is the site of a very common problem in manual wheelchair users. The shoulder is a very unstable joint when compared to the ball-andsocket structure of the hip joint. Stability is provided by muscles and tendons. This is because the shoulder needs to have a great deal of mobility to accomplish its basic task of positioning the arm in space. It is made up of two bones—the humerus and the scapula. The humerus is the long bone of your upper arm. The scapula is a flat bone that lies on your upper back over the ribs. It has a projection to the side of the body, known as the acromion, which forms the “roof” of the shoulder joint. The muscles and tendons that hold the shoulder joint in place are soft, while the bones are hard. The constant friction of the soft tendons against the hard bones can cause them to become inflamed and painful, a

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condition described as rotator cuff tendonitis (named for the major tendon that travels through the shoulder), bursitis, or impingement syndrome. In some advanced cases, the chronic inflammation and stress placed on the tendons and muscles of the shoulders can actually cause them to tear. A rotator cuff tear can lead to persistent pain as well as limited motion of the shoulder. Arthritis in the shoulder joint can result from the overuse of pushing a manual wheelchair, commonly known as “wear and tear arthritis.” Shoulder pain due to inflamed/torn tendons or arthritis is usually dull and “achy” in nature. However, it can be sharp when you attempt to move the joint by pushing a wheelchair, reaching overhead, or reaching behind the lower back. It is alleviated by resting the arm comfortably at the side. Treatment of shoulder pain from these conditions can be divided into three categories: prevention, acute management, and chronic management. The saying that “an ounce of prevention is worth a pound of cure” is very true when it comes to shoulder pain and pushing a manual wheelchair. First and foremost, an evaluation of your seated position in your current manual wheelchair is very useful. A faulty position can make it difficult to push the wheelchair. If your arms are at a mechanical disadvantage, it will increase the risk of injury. A soft “sling” chair back will not provide adequate back support while pushing the wheelchair. Strong muscles around your shoulders can help prevent injuries associated with manual wheelchair use. Certain key muscle groups need to be strengthened—the rotator cuff muscles and the muscles that stabilize your scapula are two examples. A physical therapist at a local rehabilitation center can work with you on a personalized exercise program. In addition, she can assess how you push your wheelchair and suggest techniques that will be easier on your shoulders. A power wheelchair can be very helpful if you need mobility for long distances in the community. There are several advantages and disadvantages to having a power wheelchair. The main advantage is that it takes the pressure off your shoulders and arms. This in turn can help decrease pain,

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and also serves to protect and preserve the arms from further damage. You can alternate it with a manual wheelchair for home use or short distances. The disadvantages are that a power wheelchair is bigger, bulkier, and heavier than a manual wheelchair. It requires a larger space for storage; the motor can break down; some models are difficult to maneuver in small places; and it can be difficult to get it in and out of a car, thereby making it necessary to get a modified van. One alternative is a system that permits a motor to be inserted inside the hubs of the wheels of manual wheelchairs that can propel the wheelchair at fixed speeds. You should discuss your needs and circumstances with your physician and then decide on the chair that best fits your lifestyle (see Spinal Network: The Total Wheelchair Resource Book, details in Appendix C).

Treatment of Shoulder Injuries Treatments currently available for painful shoulders associated with inflamed tendons and arthritis include medications, injections, acupuncture, and surgery. ■

Medications commonly used include Ibuprofen (Motrin®) and Naproxen (Alleve®). These are members of a class of drugs known as nonsteroidal anti-inflammatory drugs (NSAIDs). These drugs help reduce the inflammation in the shoulders and decrease pain. They can be very effective, especially if taken for sharp, acute pain of recent onset. However, they have side effects that can be quite serious. Bleeding ulcers of the stomach are probably the best known of these side effects. Kidney damage is another potentially significant side effect. Recently, two medications were introduced that reduce the risk of bleeding ulcers: rofecoxib (Vioxx®) and celecoxib (Celebrex®). NSAIDs should be taken under your physician’s monitoring. She can establish the correct dose for you. They should also be taken for a specific time period, not just to “prevent” pain from occurring.

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Cortisone injections can also help decrease pain and inflammation in and around the shoulder joint. Cortisone is a steroid, which is a very powerful anti-inflammatory medication However these injections cannot be administered on a regular basis, because longterm steroid use may weaken the tendons in the shoulders. Many doctors limit the number of these injections to three per year. These injections should be reserved for acute severe pain. Your physician may want you to receive physical therapy and limit wheelchair propulsion after a cortisone injection. Physical therapists use exercises to help improve the range of motion of the shoulders and the strength of the muscles that surround them. Physical therapists often use modalities, such as ice, heat, and electrical stimulation as part of their treatment plan. Figure 6-1 through 6-3 show some common exercises to help improve the flexibility of the shoulders. Review them with your doctor or physical therapist to make sure that they are right for you. Acupuncture has been shown to be effective for the treatment of musculoskeletal pain. Acupuncture is an oriental medicine technique that uses thin needles placed at specific points on the body to provide pain relief. They are believed to work by increasing local blood flow and releasing the body’s own natural pain killers called endorphins. In an acupuncture treatment, several fine, thin sterile needles are inserted in specific points around the shoulders and arms. The needles are left in place for about 20 minutes. The practitioner may also provide a small amount of electrical stimulation to the needles. During the treatment you typically do not feel any pain. If you do, let the practitioner know, and he may be able to reposition the needle. After the treatment, you may find that you feel better, the same, or slightly worse. It is usually recommended to have four or five treatments to determine if acupuncture is helpful.

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Figure 6-1 Stretching posterior neck and anterior shoulder. Reprinted with permission by Kevin F. Lockette, Ann M. Keyes, and the Rehabilitation Institute of Chicago. Conditioning with Physical Disabilities. Human Kinetics, P.O. Box 5076, Champaign, IL 61825-5076. ■

Surgery for the shoulder typically involves repairing a torn rotator cuff tendon and/or removing pieces of bone that are placing pressure on the tendon. After the surgery there is a recovery period during which you may need more daily assistance than usual.

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Figure 6-2 Stretching anterior shoulder and inner forearm. Reprinted with permission by Kevin F. Lockette, Ann M. Keyes, and the Rehabilitation Institute of Chicago. Conditioning with Physical Disabilities. Human Kinetics, P.O. Box 5076, Champaign, IL 61825-5076.

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Figure 6-3 Stretching inner forearm and posterior shoulder. Reprinted with permission by Kevin F. Lockette, Ann M. Keyes, and the Rehabilitation Institute of Chicago. Conditioning with Physical Disabilities. Human Kinetics, P.O. Box 5076, Champaign, IL 61825-5076.

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Figure 6-4 Stretching forearm, trunk, and buttocks. Reprinted with permission by Kevin F. Lockette, Ann M. Keyes, and the Rehabilitation Institute of Chicago. Conditioning with Physical Disabilities. Human Kinetics, P.O. Box 5076, Champaign, IL 61825-5076.

THE WRIST AND HANDS The wrists and hands are very important for propelling, stopping, and turning your wheelchair. However, their constant use can have adverse effects. Common problems include callouses of the hands, wrist pain, and pinched nerves. The last condition, commonly known as carpal tunnel syndrome, is a pinched nerve at the wrist. These conditions can exist in both paraplegics and quadriplegics. It can be especially disabling in quadriplegics who have limited hand func-

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tion, yet rely on their manual wheelchairs for mobility. The limited hand function can lead to trauma and overuse injuries. The wrist is a delicate structure, an area in which several small bones of the hand connect to the bones of the forearm, the radius, and ulna. These bones are connected by small rope-like pieces of cartilage known as ligaments. The carpal tunnel is located in the middle of the wrist. It is about the size of a thick pen’s diameter and resembles a tunnel whose walls, ceiling, and floors are made up of bones and ligaments. Several tendons that connect the forearm muscles to the wrist, hand, and fingers pass through this tunnel. The median nerve also passes through the carpal tunnel. Its final destinations are the muscles of the thumb, index, and middle fingers. This important nerve provides sensation and controls fine movements of these fingers. Pushing a manual wheelchair can lead to inflammation of the tendons and nerves that pass through the wrist, especially if you use the palm of your hand to push the wheelchair. Using the palm forces you to bend your wrist in an upward and/or lateral position while sitting in the chair. This in turn can cause pain from the constant stretching of the structures in the wrist. This same position can also cause elbow pain. The symptoms of carpal tunnel syndrome are numbness and tingling in the first three fingers of the hands. These sensations are often worse at night, but they can occur during the day as well. The pain can also travel to the shoulders. The symptoms are relieved temporarily by shaking or rubbing the hands together. Carpal tunnel syndrome is often due to repetitive motions such as those used to push a wheelchair or transfer from one surface to another. However, they can also occur in people with diabetes, thyroid disease, or fractures of the wrist. This condition is confirmed by an electrodiagnostic test. This test has two parts, “nerve conduction studies” and an “electromyogram.” Nerve conduction studies test the function of the nerves in your hand and forearm. A physician stimulates these nerves electrically and then

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records the responses. Based on those responses, she can tell if you have a pinched nerve at your wrist or elbow or perhaps a more generalized nerve problem such as neuropathy, in which the nerves of the arms and/or legs are injured and do not work properly. As a result there may be diminished strength in the limbs and altered sensations such as numbness or tingling. Neuropathies are often found in people with diabetes or who have a history of heavy drinking. Typically, this part of the test takes 30–45 minutes. An electromyogram is usually performed immediately following the nerve conduction studies. In this part of the test, the physician inserts a needle in muscles of your arms and sides of the neck. He is able to tell if you have a pinched nerve in your neck or problems with your muscles. In addition, if a pinched nerve at the wrist was detected earlier, he can tell how severe the condition is. This part of the test usually takes about 20 minutes. The treatment of carpal tunnel syndrome begins with prevention. Padding the hands with gloves and pushing the wheelchair by grabbing the rims with the fingers (rather than using the palms) is recommended. Your physician may recommend wearing wrist braces at night to keep your hands in a neutral position. In this position, there is less trauma to the median nerve inside the carpal tunnel. They may also be worn during the day, but you may find it difficult to push your wheelchair with them. Cortisone injections may also help reduce the inflammation inside the wrist and carpal tunnel. However, these injections cannot be given frequently and should be reserved for times when the pain is acute. Acupuncture and hand therapy may also be tried. If none of these measures work, your doctor may recommend surgery to help relieve the pressure inside the tunnel. Cutting through the roof of the tunnel creates more space inside for the nerve and tendons. The surgery is usually fairly well tolerated. However, scar tissue can develop inside the tunnel after surgery and irritate the nerve. Functional limitations must be considered while you recuperate from the surgery. You will probably not be able to push your wheelchair and

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will probably need additional help with everyday activities during the recovery period. If you are not willing to have surgery and have exhausted all nonsurgical treatment options, consider the option of a power wheelchair.

THE SPINE The spine is made up of bones known as vertebrae that are stacked one on top of another. Between each vertebrae is a soft gelatinous disc. The spinal cord is confined to a protected space that runs through the vertebrae. Nerves exit the spinal cord through small holes between the vertebrae. These nerves travel from the spine, eventually to the muscles, including those of the limbs. As we get older, the discs between the vertebrae lose their water content and shrink in size. This in turn can lead to changes in the vertebrae, commonly referred as osteoarthritis. They can be a source of pain and may put pressure on nerves and cause a pinched nerve. Although everyone is affected by these changes as they get older, spinal cord injured people may develop arthritis in their spine bones at an earlier age. This is sometimes due to trauma of the spine bones at the time of the original accident; fractured spine bones may have healed in an abnormal fashion. The surgery that was performed to stabilize the spine with metal rods may have altered the movements between bones at different parts of the spine, which in turn promotes the formation of arthritic changes. Some people with SCI move their power wheelchairs and control their environments through movements of their neck and chin. These exaggerated movements can possibly cause accelerated arthritic changes in the neck bones. This can be a source of pain later in life. Neck pain due to arthritis commonly presents as a dull achy sensation in the neck and upper back. However, the pain can be sharp at times. There may be a limitation of movement when turning the neck side to side or moving it up and down. The pain may travel to the shoulders.

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The muscles around the neck and upper back may be tender. This tenderness may be from stress, overuse, or pinched nerves in the neck. When they are pressed, they can duplicate the pain that you experience. This is sometimes referred to as trigger points or myofascial pain. If a nerve is pinched in the neck, you may feel electrical sensations traveling down the arms and into the fingers. There may be numbness or tingling at the fingertips. If the nerve is compressed a great deal, weakness in the affected arm(s) may also be present. Your physician may want to perform some radiologic tests. These typically include X-rays, CT-scans, and MRIs. These are all diagnostic “pictures” of structures of the neck and spine. The X-rays are usually the first to be obtained. They provide information about the bones in the neck. The physician looks for signs of fracture, arthritis, or abnormal movement between the vertebrae. The CT scan provides necessary information about the bones of the spine. It can also tell if there is any narrowing in the space that surrounds the spinal cord. This is important because additional spinal cord injury can occur if that space is too small. For a CT-scan you will be asked to lie on your back on a table that is then moved inside the CT scan machine. During the test you will be asked to lie still and not move for several minutes. This is important to obtain good quality pictures. The doctor may want to administer a substance known as contrast material. This is a dye that is inserted into your veins that makes the different structures in your neck “contrast” in appearance against each other. This might be done, for example, if an infection is suspected. The MRI is similar in many ways to the CT scan, with two major differences. First, the MRI obtains its pictures through the use of magnets, while CT-scans use X-rays. Second, the quality of the pictures is different. An MRI can produce very realistic pictures of your spinal cord and its surrounding structures. Like the CT, the MRI also requires that you lie still on a table that is inserted inside the MRI machine. A mild sedative can help you to relax if

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you are anxious in small spaces. Talk to your doctor before the procedures. The MRI can also be done with contrast material.

TREATMENT OF NECK PAIN Several treatment options are available depending on the type of problem. Medications, injections, soft collars, physical therapy, massage, and acupuncture are some of the more common treatments available. Medications include NSAIDs, acetaminophen (Tylenol®), and narcotics. The advantages and disadvantages of NSAIDs have already been discussed. They can be of help in reducing inflammation and pain, although they do have side effects. The most worrisome one is the possibility of bleeding ulcers in the digestive system. Acetaminophen has been around for many years and is a fairly safe medication. It does not decrease inflammation, but can be useful for the management of pain. The main side effect to consider is liver damage if taken in high doses for long periods of time. It is best to discuss this and all other pain medications with your doctor. Narcotic medications are usually reserved for people who have acute or chronic pain that does not respond to other medications. Some common narcotics include Percocet®, Tramadol®, codeine, morphine, and methadone. They do have side effects, which range from annoying to potentially life threatening conditions. Constipation and drowsiness are common problems. It is a good idea to consider stool softeners if you are taking a narcotic medication to minimize the risk of constipation. Pain from a pinched nerve can also be treated with medications used to treat seizure disorders. Physicians commonly prescribe gabapentin (Neurontin®). No one knows exactly how it works, but gabapentin does relieve some types of nerve pain. Its most common side effect is drowsiness. Trigger point injections can also be used in the management of muscle pain. As described above, trigger points are tender points in muscles caused by scar tissue, which irritate healthy muscle tissue under the skin. This scar tissue is formed inside the muscles by local bruising or injury.

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For example, pushing a manual wheelchair can cause chronic irritation to the muscles of the upper back. Trigger point injections are believed to help break up the scar tissue and to stimulate blood flow to the involved area. This helps with recovery and a reduction of the pain. The material injected may consist of sterile water or a medication that produces numbness; lidocaine is commonly used. This is the same medicine that your dentist may use to numb your gums. Alternatively your doctor may use a combination of a numbing medication and steroid preparation. The injection is fairly well tolerated. However, there are some side effects. Allergic reaction to the medicine is possible. Infection is rare but also a possibility. A puncture of the lung is also possible if the area being injected is directly over the lung; this is of particular concern in very thin people. After the injection, your doctor may refer you to a physical therapist who will apply a warm pack over the injected area and/or some electrical stimulation. However, you must have intact sensation in that area for this to be recommended. The hot pack is believed to increase blood flow to the injected area as well as help tense muscles relax. Physical therapy plays an important role in the management of pain in the neck and upper back. A physical therapist can teach you exercises to improve the range motion and strength of important muscle groups. She can also utilize warm packs, cold packs, electrical stimulation, and massage to help reduce the pain. The therapist can also evaluate your neck posture and seating in your wheelchair and make recommendations for appropriate changes. Last, acupuncture may be of help in the management of neck and upper back pain.

FRACTURES After a spinal cord injury, bones below the level of the injury lose calcium and become thinner and more fragile (osteoporosis). They are at a

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higher than normal risk of breaking. A break can occur during transfers, following a fall out of a wheelchair, or even while having a limb moved by a therapist or family member. The most common bone to sustain a break is the thigh bone—the femur. The signs of a fracture include swelling, warmth, increased spasms, and a deformity in the limb itself. An X-ray is used to confirm the presence of a fracture. The major problem associated with fractures below the level of the injury is deformity if the limb does not heal properly. This could lead to problems with wheelchair positioning and transfers. Surgery is not always indicated for a fracture in a paralyzed limb. Your physician may apply soft casts or splints to the involved limb if it is nonfunctional. Surgical correction is indicated if there is a risk of losing the blood supply to the limb or if the deformity will negatively impact on your ability to transfer or sit in a wheelchair. Surgery can affect your independence and level of function. It involves bed rest and increased dependence on others while you recover. It can also increase your risk of pressure sores, increase spasms, infections, and put you at risk for blood clots.

HETEROTOPIC OSSIFICATION Heterotopic ossification (HO) is an abnormal calcification of muscles around joints that occurs below the level of injury. Commonly affected joints include the hips, knees, and elbows. No one is quite sure what causes HO, but something triggers muscle cells around those joints to behave like bone cells, so they produce bone. The biggest concern about developing HO is the loss of range of motion around the affected joint(s). As a result, wheelchair positioning, hygiene, dressing, transfers, and walking (if applicable) can all be affected. Symptoms typically include pain, warmth, and loss of motion around a joint. HO typically occurs within the first few months after a spinal cord injury, although it sometimes occurs years later.

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The diagnosis is made by a blood test and/or a bone scan. Other medical conditions that can mimic HO need to be eliminated. A superficial skin infection (cellulitis), fracture, or blood clot can have similar signs and symptoms. Treatment depends on whether the HO is newly developed or an ongoing problem. If it is of recent onset, radiation, therapy, medications, and physical therapy are the standard treatments. ■

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Medications available to your doctor include Etidronate (Didronel®) and NSAIDs. The former medication works by preventing the formation of new bone. Its major side effects are nausea and vomiting. Radiation therapy may also be used. Physical therapy consists of moving the limb back and forth in the available range of motion. Surgery is usually reserved for cases where the HO is “mature” and is deemed to interfere with activities of daily living. Typically this takes 1–2 years from the time that it is first detected. Surgery involves removal of the bone, and is followed by radiation, medications, and physical therapy.

TENDON/MUSCLE TRANSFERS Muscles are attached to bones by rope-like strips of cartilage known as tendons. When a muscle contracts, it pulls on a tendon, which in turn pulls on a bone. After SCI, the muscles below the level of the injury are either partially or completely paralyzed, while the muscles above the level of the injury typically function normally. A tendon/muscle transfer procedure involves surgically transferring part of a well functioning muscle or tendon to one that does not function well. Alternatively, a tendon from an intact muscle can be directly attached to a bone. For example, the deltoid is a shoulder muscle innervated by nerves originating at the C5 level of your spinal cord. The triceps is a very strong

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muscle in the back of your upper arm that is innervated by nerves originating at C7. If the triceps is either completely or partially paralyzed, ability to transfer is limited due to the paralysis of the triceps. A surgeon can attach a part of the deltoid muscle to your triceps, thereby enabling you to perform some of the functions of the triceps. If your level of injury is at the C6 level of the spinal cord, you probably have limited use of your hands. A surgeon can attach the tendons of well functioning muscles in your forearm (brachioradialis is one muscle that is commonly used) to the tendons/bones of your wrists or fingers. This in turn can enable you to pick up and hold objects in your hands with greater ease. In order to be considered a good candidate for tendon/muscle transfers the following are necessary: ■

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At least one year must have passed from the time of the injury to give your body the maximal chance to heal. You may also recover additional muscle strength in this time period, making tendon transfers unnecessary. The muscle that will be used for transfer should have good strength. This is determined by your doctor. Spasticity should be minimal in the muscles that will be used for transfer. In addition, the spasticity across the joints that will be affected by the transfer should also be at a minimum, because spasticity can cause abnormal pulling forces that could affect healing after the procedure. The joints that will be affected by the transfer should be free of major contractures. A good range of motion is essential. Your physician or therapist may recommend a stretching program prior to the surgery. The nerves in the muscles that will be used in the transfer or receive the transfer must be intact and functioning properly. Your doctor may order an EMG and nerve conduction test to confirm this.

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Good hygiene and well controlled diabetes are important for proper healing after the surgery. You must be motivated to undergo such a procedure.

After the surgery you will probably be more dependent on others while you recuperate. You will not be able to push a manual wheelchair for a few months, therefore a power wheelchair may be necessary for mobility. Your surgeon may also want you to wear special braces or a cast for several weeks, to keep the hands and arms in an optimal position for healing. You will also need rehabilitation. This will consist of gentle stretching and strengthening exercises to the involved muscles. This is important to reduce the swelling after the surgery as well as help regain motion in the affected joints. Scar massage, biofeedback, and electrical stimulation may also be recommended. You may notice an increase in muscle spasms following the surgery. Mention these to your doctor, as different treatments are available to help bring them under better control. This is important for adequate healing.

SPASTICITY Spasticity is a condition that many people with SCI deal with every day, in which the legs and/or arms are “jumpy” or move on their own. Spasticity can cause discomfort and promote contractures. It can also interfere with activities of everyday life such as transfers, walking, hygiene, and dressing. In this section we will discuss the current scientific explanation of spasticity, its advantages and disadvantages, its impact on the older spinal cord injured individual, and the various treatment options that are available.

What Is Spasticity? In order to understand what spasticity is, we have to first discuss the connections between your muscles, nerves, spinal cord, and brain.

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“Cables” of nerves connect your brain and your spinal cord. Some of these cables are responsible for gathering sensory information from your body and transmitting this information to your brain for interpretation. Other cables carry instructions from the brain to nerve cells in the spinal cord, which in turn send branches—peripheral nerves—to the muscles in your body. The nerve cells in your spinal cord often receive dual information from the cables coming from the brain. Some of these cables carry information that is excitatory in nature. They communicate with the nerve cell, which in turn communicates with the peripheral nerve to have it stimulate a muscle. The muscle then contracts. Other cables carry information that is inhibitory in nature. They communicate with nerve cells, which in turn communicate with the peripheral nerve not to stimulate the muscle to contract (i.e., to encourage the muscle to relax). In SCI many or all of these cables are disrupted at the time of the injury. Therefore, there is no effective communication between the brain, spinal cord, peripheral nerves, and muscles. Muscles do not know when to contract and when to relax. The main message that muscles receive is to contract and not relax. There is a great deal of “excitatory” input and not enough “inhibitory” input.

What Are the Signs and Symptoms of Spasticity? The hallmarks of spasticity are brisk reflexes, involuntary movements, and stiffness in the limbs below the level of the injury. If you are quadriplegic, your arms and legs can be affected; if you are paraplegic your legs can be affected. The spasms may be painful or may come at awkward social times (i.e., a social outing with friends or business colleagues). An important sign to watch for as you get older is a change in the frequency of your spasms. An increase in the number of spasms experienced on a daily basis may indicate an early internal problem such as infection, kidney stones, or even appendicitis.

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What Are the Disadvantages of Spasticity? The increased stiffness in the limbs may lead to the development of contractures. Typically, these occur at the ankles knees, hips, elbows, and shoulders. These contractures may be painful and can lead to loss of critical motion in a joint. Once that motion is lost, there is increased difficulty in performing certain activities with the limb. For example, if you are a paraplegic and develop a knee contracture, you may find it increasingly difficult to transfer in and out of your wheelchair. Spasticity can also put you at increased risk for developing pressure sores due to alterations in the way you sit or lie. The combination of spasticity and contractures are of particular concern as they can lead to the development of pressure sores.

What Are the Advantages of Spasticity? Not all that is spastic is bad. For example, stiff legs can make pulling on pants easier. Transfers from a wheelchair to bed may also be easier with stiff legs. Spasms can maintain muscle bulk and prevent swelling. Increased spasms may also be a sign that something is wrong internally. As mentioned earlier, increased spasticity can be a symptom of a urinary tract infection, a bladder stone, a pressure sore, or even an ingrown toenail. If you notice an increased number of spasms in the arms or legs, mention it to your doctor and have him evaluate it.

How and When Is Spasticity Treated? Spasticity does not always have to be treated. If you are accustomed to the spasms and they do not affect your everyday life, they may not require treatment. Treatment is usually prescribed for painful spasms, or when spasticity interferes with activities of everyday life such as hygiene, dressing, bathing, transfers, or sitting in a wheelchair. It is important for you to tell your doctor what activities are affected by the spasticity. If the spasticity is serious enough that you need to do something about it, start with less invasive treatments first. Removal of an ingrown

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toenail, treatment of a urinary tract infection, or managing a pressure sore can decrease spasms. Perform a simple screen for possible causes: a) have your spouse, doctor, or attendant look for pressure sores on your heels, buttocks, or lower back regions; b) check for symptoms and signs of an infection, which can include fever, cough, increased urination, foul smelling urine, or diarrhea; c) check for problems associated with a urinary catheter such as kinking of the tubes or irritation of the skin in the genital area; and d) check for difficulties with bowel routines. Constipation can be due to medications, as well as limited water and fiber intake. If any of these problems are present, let your doctor know. It is important to stretch the muscles that are affected by the spasticity one to three times a day to prevent them from becoming tight. Special attention should be given to muscles around the shoulders, elbows, hips, knees, and ankles. Some rehabilitation specialists advocate applying cold packs to spastic muscles for twenty minutes or electrical stimulation to help reduce the spasticity. It is important to note that muscles affected by spasticity are very often also weak. As the spasticity is reduced by various means, the underlying weakness may become more apparent. Your rehabilitation doctor or therapist can recommend a good strengthening program.

What about Medications? Several medications are currently being used to treat spasticity. Baclofen is probably the best known, and it is usually the first one to be tried in the management of spasticity. Baclofen works at the level of the spinal cord by providing “inhibitory” input to the nerve cells. This in turn leads to a decrease in muscle activity and the state of constant contraction. Typically, it is available in pill form and is administered in multiple doses per day. Common side effects include sedation, weakness, and dizziness. One important fact to keep in mind is that baclofen cannot be stopped abruptly. The dose must be reduced slowly over a period of time,

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otherwise seizures and hallucinations may occur. It is eliminated from the body by the kidneys, therefore the dose needs to be adjusted in people with kidney problems. Baclofen can also be administered directly into your spinal canal via a tube that is connected to a surgically implanted pump in the wall of your abdomen. The pump is programmed to deliver a specific amount of the medication at set intervals of time because it is delivered directly to the spinal cord where it is most needed. The main advantage is that the pump drastically decreases the total amount of baclofen needed to treat spasticity, so that it produces fewer side effects. The best candidates for the pump are people, but who have reached the maximal possible dose of baclofen administered in a pill form who are still significantly bothered by the spasticity, or who cannot tolerate the side effects of the baclofen in a pill form. The baclofen pump is quite effective for the treatment of spasticity in the legs, but it may not be quite as successful for spasticity in the arms. If you and your doctor agree that you are a good candidate for the pump, the first step will be to inject the baclofen into your spinal canal to see if you can tolerate the medication when administered by this route. If you tolerate it well, and see a reduction in spasticity you may then undergo the pump implantation surgery. This pump must be refilled with medication on a regular basis. Neglecting to refill it on a scheduled basis can lead to side effects, including very severe rebound spasticity and high blood pressure. Potentially serious side effects can occur if too much baclofen is released into the spinal canal, including excessive sedation, dizziness and respiratory difficulties, coma, and even death. It is important to keep your regularly scheduled appointments with your doctor to prevent this from happening. Diazepam (Valium®) has also been used for the treatment of spasticity. It also works by increasing the inhibitory input to brain and spinal cord nerve cells. However, it has potentially more side effects. These include sedation, depression, and weight gain. In addition, it may also adversely affect concentration and attention span as well as produce dependency on the drug.

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Clonidine (Catapress®) and Tizanidine (Zanaflex®) have also been used in the treatment of spasticity. They are believed to work by releasing “inhibitory” substances or blocking “excitatory” substances. Their main side effects include low blood pressure and significant sedation, dizziness, constipation, weakness/fatigue, nervousness, and dry mouth. Dantrolene (Dantrium®) is believed to work at the level of the muscles themselves. It blocks both spastic and normal muscles from contracting. Its main advantage is that it is less sedating than other medications. However, it can cause a generalized weakness. A potentially serious drawback to its use is liver damage, and liver function has to be monitored periodically while it is being used. Your doctor can order periodic blood tests. Gabapentin (Neurontin®) has been used to treat seizures, nerve pain, and spasticity. Its mechanism of action is not known, but in some studies it has been shown to decrease spasticity. It is fairly well tolerated, but potential side effects include sedation, dizziness, balance problems, and fatigue. Sedation can be minimized by decreasing the dose or taking the medicine at bed time. Two different types of injectable materials have been advocated in the treatment of spasticity—botulinum toxin (Botox®) and phenol. Both types of injections are reserved for specifically targeted spastic muscles that may affect your daily activities or that may be painful. Botulinum toxin works by blocking the connection between nerves and muscles. Major advantages of the Botox® injection are that it is fairly easy to administer and is generally well tolerated. The results are typically noticed within hours or a few days following administration. The limb may seem looser. The decreased spasticity can last several weeks to several months. Sometimes the muscle can become too weak following the injection. Don’t be alarmed. This is not permanent, since the effects of the medication eventually wear off. However, if the outcome is good, you will need to receive the injections every few months to maintain the desired effect. This may not be desirable for pragmatic reasons as well the high cost of the injections themselves.

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Phenol is a type of alcohol that destroys the nerve supply to a spastic muscle. Its effects are therefore permanent. Because it can also destroy sensory nerves in the area of the injection you may have persistent abnormal or painful sensations in the injected areas.

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Spasticity does not always have to be treated. Treatment should be reserved for times when the spasms are painful or if they interfere with everyday activities such as dressing, hygiene, or transfers. An increase in spasticity may be an early sign that you may have a medical problem requiring treatment. Possible causes include a urinary tract infection, pneumonia, or an ingrown toenail. Discuss the significance of the increased spasms with your doctor. Sedation is a major side effect of many of the medications that are used to treat spasticity. If your doctor thinks that you need a medication, discuss with her the possibility of choosing one that is less sedating, and begin treatment with a low dose that is gradually increased.

References Charlifue SW, Lammertse DP. “Aging in Spinal Cord Injury” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:409–423. Little JW, Burns SP. “In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:241–252. Locketyte KF, Keyes AM. Conditioning with Physical Disabilities. Illinois Human Kinetics. 1994. Priebe MM, Goetz L, Wuermser L. “Spasticity Following Spinal Cord Injury” In Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:234-240. Waters RL, Ien HS, Adkins RH. “The musculoskeletal system” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications @1993:53–71. Waters RL, Muccitelli LM. “Tendon transfers to improve function of patients with tetraplegia” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:424–437.

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7 Skin and Dental Care

As you are probably aware, good skin care is essential if you are living with a spinal cord injury. This chapter provides some helpful guidelines to good skin care, followed by a discussion of the prevention and management of pressure ulcers, one of the major potential problems of living with spinal cord injury. Dental care can be challenging if you have limited hand function. A section of this chapter will address this important topic.

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Inspect your skin at least 1–2 times per day (Figure 7-1). This is especially important for areas that are at high risk of developing pressure sores such as the hips, buttocks, heels, elbows, and back of the head. Some areas are hard to see, so it is a good idea to use a long hand-held mirror when you are performing the inspections. It is also useful to have your spouse, significant other, or attendant inspect those hard-to-see areas as well. Look for areas of redness, skin irritations, cuts, and blisters. Areas of red skin are a sign of excess pressure and inadequate pressure relief. Keep the skin clean and free of moisture. Keeping the skin clean is one way to prevent infections. Moisture on the skin can also be 85

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MALLEOLUS

ANTERIOR KNEE

PERINEUM

SHOULDER SIDE OF THE HEAD

TROCHANTER

SHOULDER BLADE

POSTERIOR KNEE

ISCHIUM RIM OF EAR

SACRUM AND COCCYX

OCCIPUT

ISCHIAL TUBEROSITY HEEL

SACRUM AND COCCYX

ELBOW

DORSAL THORACIC AREA

FOOT

Figure 7-1 Skin inspection points. Reprinted with permission from the Paralyzed Veterans of America (PVA), 801 18th Street, NW, Washington, DC 20006. Phone: (202) 872-1300. Email: [email protected]. Web site: www.pva.org. Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury (3rd Edition), © Paralyzed Veterans of America, 2000.

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a risk factor for pressure sores. The groin area is at particularly high risk. Clean that area at least once per day. Urine, fecal incontinence, and sweating can all lead to skin breakdown. It is important that you have a stable bowel and bladder regimen that is accident free. Avoid tight clothing and shoes. Tight clothing can reduce blood supply to an affected area and can lead to pressure sores. Always wear loose pants, shirts, socks, and shoes. Avoid “shearing” forces. These typically occur when you are dragged across a bed or in and out of a wheelchair in an attempt to position you better or assist with transfers. Shearing forces can lead to skin breakdown. Stay as close as possible to your ideal body weight. There are several reasons why this is important for your health, and good skin care is one of them. If you are underweight, there is less padding over prominent bony areas such as your hips. The excess pressure

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on those areas can restrict the blood supply and cause pressure sores. Being overweight makes it difficult to fit adequately into a wheelchair or to perform adequate pressure relief techniques. Eat right! Make sure that you eat an adequate amount of protein for your body weight each day. Generally, it is recommended that this be about 0.5 grams of protein/pound of body weight per day. In addition, stay well hydrated. Calcium, folate, magnesium, and vitamins such as B6, C, A, and E are also important for your skin and should be a part of your daily food intake. Check your equipment on a regular basis. Wheelchair cushions are especially important because they reduce the pressures on your buttocks and hips while you are seated. If the pressures are too high, the blood supply to those areas is diminished, which leads to pressure sores. The seating system includes all parts of the wheelchair that come into contact with your body; including the cushion as well as the foot/leg rests, and the back of the chair. Have your seating system assessed on a regular basis by the wheelchair clinic at your local rehabilitation hospital or the vendor from whom the wheelchair was purchased. Proper positioning in bed is important. Pillows can be very helpful in reducing pressure over sensitive areas. Also, avoid lying on one side for too long. Turn in bed once every 2 hours. Fidgeting in bed is a good thing because it minimizes excessive pressure from developing over one area. Weight shifts should be performed for 15 seconds every 15 minutes (or 30 seconds every 30 minutes) while you are sitting in the wheelchair. There are several techniques to accomplish this. Press-ups and leaning forward or from side-to-side are some of the more common ones. It is a good idea to have a physical therapist or your physician assess your ability to perform these techniques properly. Just because you are performing weight shifts does not necessarily mean that you are providing adequate pressure relief to pressure-sensitive areas. If

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it is too difficult to perform pressure relief techniques, consider a power reclining wheelchair. However, you still have to remember to shift your weight with these types of wheelchairs. Don’t smoke! There are several reasons why this is important for your health and good skin care is one of them. Smoking decreases blood circulation to pressure-sensitive areas, which can lead to pressure sores. Medical conditions such as diabetes and anemia should be adequately treated. ■ Diabetes can lead to poor circulation. Maintain your blood sugar levels in an acceptable range by eating right and taking medications prescribed by your doctor on a regular basis. ■ Anemia is a condition in which the number of well–functioning red blood cells is diminished. This is important because red blood cells carry oxygen to parts of the body that are at risk of developing pressure sores. There are many causes for anemia, including a lack of iron in your diet. This is readily corrected by ensuring an adequate intake of iron on a daily basis—either through diet or supplements. Other causes of anemia include blood loss, which should be thoroughly investigated by your doctor. Limit contact between your insensate skin and hot or cold objects. These can lead to injury to the skin. Make sure that your spouse, significant other, and/or home health attendant is well trained and vigilant about your skin care.

PRESSURE ULCERS Given the high prevalence of pressure sores in SCI—(50–80 percent of all people living with SCI will develop at least one pressure sore at some point in their lives)—this topic is covered here in greater detail. Treating a pressure sore is expensive—between $20,000–80,000 if hospitalization and surgeries are required. A pressure sore can also

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impact on your well-being and function. If you are hospitalized, you may be required to stay in specialized beds for prolonged periods of time, and that prolonged bed stay can make you weaker and stiffer once the pressure sore is healed. This can, in turn, make it more difficult for you to return to your previous level of function. A prolonged bed stay can also put you at risk for other medical problems, such as blood clots in the legs (also known as deep vein thrombosis, or DVT), lung infections (pneumonia), increased spasticity, and contractures. As you can see, pressure sores are a serious matter. This part of the chapter focuses on five areas: ■ ■

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A brief description of the anatomy of the skin A description of the grading system of pressure sores that health professionals use A review of the various risk factors for the development of pressure sores A discussion of ways to prevent or minimize your risk of developing pressure sores An overview of the various treatments that are currently available

Material for this chapter was obtained from two sources. The first is a publication entitled Clinical Practice Guideline: Treatment of Pressure Ulcers, which was based on the recommendations of a panel of experts in nursing, rehabilitation medicine, wound care management, biomedical engineering, and dermatology commissioned by the U.S. Department of Health and Human Services. The panel reviewed all the existing scientific literature and made recommendations based on the scientific merit of the treatments available today. The second source is the work of Kevin O’Connor and Richard Salcido, Pressure Ulcers and Spinal Cord Injury.

Anatomy of Skin and Tissues in High Risk Areas for Pressure Sores The areas at highest risk for pressure sores are those between the low back and the tailbone, the pelvic and hip bones (ischial tuberosity and greater trochanter), and the heels.

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These areas are especially vulnerable because they are very bony and don’t have a great deal of padding. In addition, they are subject to a great deal of pressure from holding up your body when you are sitting in a wheelchair all day. The skin overlying those areas has two layers—the epidermis, which is the most superficial, and the dermis, which is just under the epidermis. Under the dermis is an assortment of fat and fibrous tissue known as the subcutaneous tissue that connects the skin layers to the underlying muscles. Just overlying the muscles is a fibrous covering known as the fascia. The muscles form the next layer, and under that is the bone. It sounds like a great deal of padding, but in reality it may not be all that much if you are a thin person. HAIR SHAFT

PORE

EPIDERMIS

DERMIS

VEIN SWEAT GLAND

ARTERY HAIR FOLLICLE

NERVES SEBACEOUS (OIL) GLAND

Figure 7-2 The skin. Reprinted with permission from the Paralyzed Veterans of America (PVA), 801 18th Street, NW, Washington, DC 20006. Phone: (202) 872-1300. Email: [email protected]. Web site: www.pva.org. Yes, You Can! A Guide to Self-Care for Persons with Spinal Cord Injury (3rd Edition), © Paralyzed Veterans of America, 2000.

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Grading of Pressure Ulcers Pressure ulcers develop as a result of excessive pressure on the soft tissues (skin, subcutaneous fat, and muscles) overlying a bony area. If not removed, the pressure restricts the blood supply to those tissues, causing them irreparable harm. The National Pressure Ulcer Advisory Panel (NPUAP) has identified four stages of pressure sores. ■

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Stage 1: Characterized by a redness of the skin that does not blanch when pressure is applied with a finger. The epidermis is intact. A pressure ulcer caught at this stage is one that is most likely to heal once the pressure on the area is removed. Stage 2: Characterized by a tear in the most superficial layer of the skin, the epidermis. The tear may extend to the dermis and may look like a blister or a crater. Stage 3: Characterized by a hole that extends through the epidermis, dermis, and subcutaneous tissue and goes down to the fascia. This can look like a crater. Stage 4: Characterized by a hole that extends through the epidermis, dermis, subcutaneous tissues, fascia, and muscle and can involve the underlying bones or joints.

The higher the stage, the more serious is the pressure sore. Stages 3 and 4 are very serious, more difficult to treat, and tend to occur more commonly in the bony areas just under each buttock (the ischial tuberosities). It is very difficult to stage a pressure ulcer just by looking at it. It may be deceptively small to the naked eye, yet it can often be quite deep. Staging is made even more difficult if you have dark skin. The take home message is that once you identify a pressure ulcer, have your doctor check it thoroughly.

Predisposing Factors The major predisposing factor for a pressure ulcer is pressure over a bony area. Such pressure can result from a lot of force being applied to a small

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area for a short period of time, or from a little pressure applied over a longer period of time. The type of pressure applied is also an important risk factor. Shearing forces, such as when you are dragged across the sheets to position you better in bed, can lead to tears in the skin. If you have thin skin over a bony area, you don’t need much shearing force to cause a tear. Moisture in sensitive areas can also increase your risk of a pressure ulcer. This moisture can be due to perspiration, or from urine in your buttock and pelvic areas. Urine can collect there without your knowledge if a condom catheter dislodges or comes off. Leakage can also occur if your bladder is very full and you have not catheterized yourself. Stool material from an inadequate bowel routine can also irritate the skin, leading to skin breakdowns. Nutrition is another important factor. Skin needs proteins, nutrients, and vitamins to stay healthy. A diet that is not adequate in protein can also predispose to skin breaks. More important, it can impair your ability to heal a pressure ulcer once one has formed. Inadequately controlled spasticity and contractures in the legs can put large pressures over bony prominences such as the heels and the inside of the knees. Treating spasticity properly can reduce your risk. A high level of SCI, limited movement during the day and night, a previous pressure ulcer, a low blood count (anemia), and diabetes all contribute to the formation of pressure sores. Diabetes also negatively affects the healing process. Last, you can develop pressure sores if the seating cushion in your wheelchair or the mattress on your bed cannot adequately relieve your pressures.

Preventing Pressure Ulcers This is probably one of the most difficult challenges that you will face, because it requires constant vigilance on your part and that of your caregivers. Some common sense approaches to prevention include performing weight shifts regularly—about 30 seconds every 30 minutes, the same

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amount of time as a commercial during a TV show. If you are in a wheelchair and have adequate arm strength and trunk control, there are several ways to perform weight shifts for pressure relief. You can lean forward in your chair until your forehead touches your knees. Alternatively, you can lean from one side to the other, or you can place your hands on the arms of the wheelchair and press to lift yourself up from the chair. If your arms and trunk are too weak for you to perform adequate pressure relief, you should speak to your rehab specialist about changing to a wheelchair that can tilt. That tilting helps reduce pressure over the bony areas and is operated by a switch on a control unit located on the arm of your wheelchair. Wheelchairs should be evaluated periodically. As they age, they are subject to changes in shape and ability to provide adequate pressure relief. Moreover, if the back of the wheelchair is a “sling back,” it can impair your ability to sit well in your seat. The seat cushion should be checked regularly. Very often, cushions are made from a composite of a foam and/or gel-like material or air pockets. These materials can break down, so that they no longer provide you with adequate pressure relief. The only way for you to know this would be to check the cushion regularly or have an experienced seating expert check it for you. To keep the pressure down on a high risk area or an area that has an existing pressure ulcer, your doctor may recommend a special air-filled mattress or a special bed. There are advantages and disadvantages to special beds. Some disadvantages include their large, bulky size, and difficulty transferring in and out of them. As mentioned earlier, smoking negatively impacts on wound healing, therefore you should stop. Eat a healthy diet that has an adequate amount of protein, Vitamin A, B6, B12, C, zinc, calcium, folate, and magnesium. These are all essential vitamins and minerals for wound healing. A consultation with a nutritionist can be very helpful in identifying appropriate foods that can meet your nutritional needs as you heal from a pressure ulcer.

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Reassess your bowel and bladder routine to devise ways to help keep the skin dry by preventing leakage of urine and stool material.

Treatment of Pressure Ulcers The first and foremost principle in the treatment of a pressure sore is to remove the pressure over the area. The second most important principle is to keep the area clean so that the healthy tissues can adequately heal. Stage 1 and 2 pressure ulcers can usually heal with conservative treatments, which I will outline further below. Stage 3 and 4 ulcers are more extensive and treatment may require a surgical procedure. The care of an ulcer involves keeping the area clean of any dead tissue, often referred as necrotic tissue. It is removed in a variety of ways. Your doctor may use a scalpel to cut it away. Alternatively, gauzes wet with sterile water may be placed in the ulcer. As these gauzes dry, they trap dead tissue in them, and once they are dried, they are removed and thrown away. Another approach is to irrigate the ulcer with a jet of water to try to remove some of the dead tissue. These techniques can be somewhat uncomfortable if you have sensation in the affected area. Let your doctor know if this is the case so that he may prescribe some pain medications prior to the procedure. Another way to get rid of the dead tissue is by using substances such as special cleansing agents that can break it down into smaller parts that can be removed with greater ease. Your doctor may also choose to cover the ulcer or pack it with special dressings that can give the healthy tissues an optimal chance to heal. It is very important that bacteria inside the healing ulcer be kept to a minimum. Infection inside the pressure ulcer is usually suspected if the ulcer or surrounding tissues has a foul odor and discharge. If an infection is suspected, your doctor may prescribe a topical or systemic antibiotic. Sometimes the bone beneath the ulcer is infected. This condition is known as osteomyelitis. If it is present, then you may need prolonged intravenous antibiotics, or more extensive treatment of the bone itself.

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Once the remaining tissues inside the ulcer are determined to be healthy, it is not a good idea to keep using cleaning agents or iodine-containing solutions, because they can hurt the healthy tissues, and this, in turn, can negatively impact on the healing process. Surgery may be necessary to treat advanced pressure ulcers such as Stage 3 and 4. The surgeon can attach a piece of healthy skin and/or muscle (musculocutaneous flap) from another part of your body (the side of your thigh) to the ulcerated area. This fills and/or covers the ulcer. Following the surgery, you usually have to spend several weeks off the repaired area to give it a chance to heal.

DENTAL CARE Our teeth are made out of a strong outer layer known as enamel. The nerves and blood vessels that supply nourishment and sensation to the teeth lie under this enamel layer, and the teeth are anchored to the gums. As we get older there is an increased risk of developing cavities and gum disease. Cavities develop when food particles are trapped in between the teeth and attract bacteria to the area. The bacteria break down the enamel; and eventually the nerve inside the tooth becomes irritated and causes pain. Gum disease occurs when the gums become irritated and inflamed as the result of inadequate or inappropriate brushing of the teeth or eating larger chunks of food. Damaged teeth can cause you to lose the ability to eat, which in turn can cause you to become malnourished and lose weight. This in turn can adversely affect your overall health. Injured teeth are also a source of pain and discomfort. A common causes of dental problems in people living with SCI is limited hand function. This can cause you to lose the ability to brush and floss in between your teeth on a regular basis which makes it difficult to keep your teeth and gums clean of food particles. You should floss and brush your teeth 2–3 times per day—especially right after meals, and rinse after eating. It is especially important to set aside uninterrupted

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time each day for the care of your teeth. If you have limited hand function, speak to your dentist about a possible modified hand-held device to better hold the toothbrush. A toothbrush should be soft. If it is too harsh, it can irritate your gums while brushing. Alternatively, an electric toothbrush may be helpful. If you are unable to use your hands at all, then your caregiver has to be instructed in the proper way to brush your teeth. It is a good idea to have him accompany you on your visit to the dentist. The dentist or the dental hygienist can properly teach your caregiver in how to brush and floss your teeth. You should also stay away from “sticky sweets” such as lollipops and licorice candy. These foods stick to your teeth and can become a source of nourishment for bacteria, thereby promoting cavities. Speak to your dentist about special devices that can be used to apply sodium fluoride directly to teeth. Sodium fluoride is a substance that makes tooth enamel stronger. Another common cause of dental problems in SCI is dry mouth due to a decreased amount of saliva. Saliva acts as a lubricant, coating food and making it easier to chew. It also contains enzymes that help to break down food into smaller particles.There are many causes of dry mouth in SCI, but the most common is as a side effect of medications. If you have dry mouth, you should: ■

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Talk to your doctor about this symptom. She can review your medications and try to reduce or eliminate the offending drug. See your dentist. Artificial saliva is available and may be helpful. Try to avoid mouthwash that contains alcohol, which can make the condition worse Use sugar-free lemon sucking candies to help stimulate the release of saliva.

Dentures If you have lost teeth due to damage, dentures can both improve your appearance and assist you in chewing food. Dentures must fit properly, or

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they can irritate the gums, thereby contributing to gum disease. Dentures should be washed 2–3 times per day and soaked at night. Your dentures should be checked at your regularly scheduled checkups. Other recommendations: ■

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See your dentist every 3–6 months. She can check for any cavities, assess your dentures if you have them, and provide a thorough cleaning for your teeth. Do not smoke or drink excessive amounts of alcohol. Smoking and alcohol abuse can lead to the development of cancer in the mouth.

References Clinical Practice Guideline #15: Treatment of Pressure Ulcers. U.S. Dept. of Health and Human Services, AHPCR Publication No. 95-0652 Public Health Service, Agency for Health Care Policy and Research Rockville Maryland, 1994. Hammond M, Umlauf RL, Matteson B, Perduta-Fulginiti S. “Yes You Can: A Guide to Self Care for Persons with Spinal Cord Injury.” Washington DC, Paralyzed Veterans of America, 2001. O’Connor KC, Salcido R. “Pressure Ulcers and Spinal Cord Injury” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:207–220. Personal communication: Drs. Daniela Spector, D.D.S., Yuval Spector, D.D.S., Gerald F. Sabol D.D.S, Daniel E. Macdonald, D.D.S., and John Piro, D.D.S. Yarkony GM. “Aging Skin, Pressure Ulcerations and Spinal Cord Injury.” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications, 1993:39–52.

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8 Your Emotional Well-Being

Life after a spinal cord injury involves many challenges, both physical and emotional. This chapter addresses some of the most common psychological issues that you may have to confront and offers some suggestions on how to cope with them.

THE “4DS” Joyce Fichtenbaum, PhD, and Steven Kirshblum, MD, identified the 4Ds that can affect the emotional well-being of a person living with SCI: depression, dependency, drug addiction, and divorce. The sobering fact is that people with SCI are at high risk of having one or more of these problems. ■

Depression. As many as 25–45 percent of people with SCI suffer from depression. You are at a higher risk if you have a family history or a pre-SCI history of depression, have a limited network of friends and family, and abuse alcohol or drugs. Certain medications such as glucorticoids can also increase your risk. Depression can manifest itself in many ways. Sadness, hopelessness, lost interest in once pleasurable activities, decreased appetite, weight loss, anxiety, irritableness, poor attention, and 99

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poor concentration can all be signs of depression. Neglecting to care for yourself is another; not performing weight shifts, which can lead to pressure sores, can be considered a type of neglect. A plan to commit suicide is a very worrisome possible consequence of depression. The person at highest risk is a man (adolescent or elderly) who has a history of depression, has attempted suicide in the past, has a limited social network, and has formulated a suicide plan. If you recognize any of these characteristics in yourself, you should speak to your physician at once. Treatments are available to help you get through this crisis, including medications, counseling, and psychotherapy. Post traumatic stress disorder. This is a condition in which you experience the events that led to your spinal cord injury over and over, in dreams or in flashbacks, triggering a considerable amount of anxiety and stress. For example, if you are a veteran and you sustained your injuries during wartime, you may experience nightmares about the events that led to your SCI. War movies may be very difficult for you to watch because they can trigger flashbacks that can make you feel anxious and irritable. You can be easily startled and angry. You may find that you go out of your way to try to avoid any conditions that can cause you to re-live those experiences. Such symptoms can last for periods as long as a month, sometimes longer. Dependency. Following your spinal cord injury, therapists, nurses, and family members probably took turns caring for you. This was very reasonable at the time. If you could not perform an activity, someone was around to help you. Although the rehab staff showed you how to become more independent in caring for yourself, you may have become more passive as time went by. You may have continued to rely on others to do things for you that you could perform on your own. This dependency on others is not good. You should be as independent as possible and seek help only when you truly cannot

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perform a task. Being dependent can put undue stress on people who care about you and for you, and the toll this stress takes on them can ultimately work against you. There may come a day when they will no longer be able to give you the care you need! You should always communicate clearly with your caregivers and/or significant people in your life. Your rehab team should clearly delineate what you can and cannot do, and you and your caregivers should follow this care plan. Drug addiction. Unfortunately, many people living with SCI abuse alcohol and/or drugs. If you are one of these people, you owe it to yourself to get help. This is highly destructive behavior that can interfere with your ability to take care of yourself. Living with SCI is a challenge in itself; trying to cope while under the influence of drugs or alcohol makes it even harder. Alcohol and drug abuse can also impact on your ability to work, to maintain steady social relationships, and to maintain an independent lifestyle. I will not dwell too much on the treatment of substance abuse in this book. However, if you drink alcohol, you should answer the following questions for yourself: a) Did you ever feel that you should cut down on your drinking? b) Have you ever been annoyed when somebody told you that you have to stop drinking? c) Did you ever feel guilty because of your drinking? d) Have you ever taken a drink in the morning (an eye-opener)?

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If you answered yes to two or more of these questions, you may have a drinking problem and should seek help. Divorce. People with SCI have a higher rate of divorce when compared to the non-SCI population, largely due to the many stresses SCI places on a relationship. The non-SCI partner must deal with the increased responsibilities of caring for the SCI partner. In addition, there are often financial difficulties due to lim-

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ited income, and extra expenses such as attendant care and home modifications. However, there are ways that you can minimize your risks of divorce. First and foremost, get more education. Statistics show that couples are more likely to stay together after SCI when the person with SCI has a college education. Education translates into more maturity, a better understanding of how to stay healthy, and a higher earning potential. A higher salary, in turn, means increased ability to pay for more attendant care if it is needed, thus relieving your spouse of some of the daily direct care responsibilities. A high level of independence with activities of daily living also helps a marriage. I address some of the issues of concern to the spouse of an individual with SCI in another chapter.

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Stress management techniques. It is helpful to learn ways to relax when you feel stressed by events in your life. Meditation, breathing techniques, and biofeedback can be helpful. Ask your physical therapist or physician about places where you can learn these techniques. Be assertive when it comes to your care. You are your own best advocate when it comes to your care. The more time you spend living with SCI, the more you know what works for you and what does not. Don’t be afraid to speak openly and honestly with your medical providers, personal assistants, family members, and insurance company representatives. Work with them as colleagues in your care. Listen to their advice, but also be heard on issues that are important to you. Don’t drive away the people you need. It is important to distinguish between being assertive in regard to your needs and being demanding and unreasonable. Identify the people in your life

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who are important to you. They may be home health attendants, family members, or close friends. Nurture those relationships. Don’t make unreasonable demands on them. Praise and thank people often if they are truly helpful. Work at having an upbeat, positive outlook on life. Find good in everyday things. In the end, you will benefit the most. Be flexible. Be open to new ideas. What worked for you for the past ten years may not be what is best for you at this time or in the future. Listen to your doctor’s advice if he recommends switching from a manual wheelchair to a power wheelchair. The goal is to remain as independent and functional for as long as possible! Assume responsibility for your actions and learn from your mistakes. Pressure sores can often be prevented with meticulous care of your skin, but if one should develop, instead of feeling sorry for your predicament, try to understand what contributed to it. Inadequate weight shifts, infrequent skin inspections, and a poor seating cushion can all contribute to the development of pressure sores that might have been prevented with proper vigilance on your part. Understanding your contribution to the problem helps you to learn from your mistakes and correct them in the future. Don’t blame others for your problems; focus energy on how to deal with them. Blaming others for your problems may give you some temporary satisfaction; however, it is not a good strategy in the long run. Deal with your problems in a practical way. If a pressure ulcer was caused by an old seat cushion, change it. If specialists at a wheelchair clinic recommend a new wheelchair that can help with pressure relief, listen to their advice. Develop new skills. As new challenges arise, the old ways of handling them may not work any more. For example car and mat transfers may have been easy to perform when your shoulders did not have pain. However, years of transferring may have caused tears in tendons and arthritis. A transfer technique that

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you have not used in a long time (sliding board transfers) can be very helpful at this time. Don’t be afraid to question your rehab team on new ways to address old problems. Focus on how far you have come, not how far you still need to go. Two of the benefits of getting older are wisdom and the sense of being a survivor. Living with SCI for 10, 20, or 30 years is not easy, and you should take pride in the challenges you have overcome and in how far you have come. Focus on the many accomplishments in your life, big and small—a successful marriage, graduating from college, getting and keeping a good job, raising children, maintaining good friendships with close friends. All these are positive aspects of life and should be treasured. A certain wisdom comes from having lived with SCI for a long period of time. Believe it or not, you are an expert on SCI and could teach a few things to your caretakers, physicians, and therapists. You know which catheters have worked the best for you, or which wheelchair is the easiest to propel and most reliable. Use that knowledge to your advantage when meeting with your rehab team. Develop a good social support system. A good social support system is very important for your emotional and physical wellbeing. You should strive to surround yourself with people who genuinely care about your welfare. Nurture those relationships. Be kind to those who care for you. Don’t overburden your spouse, but work together with her on ways to relieve some of the stress. It is important not to isolate yourself from the rest of the world. Reach out to groups in your community—a local house of worship, a local paralyzed veterans’ organization, or senior citizens center—for help and companionship. If there are no groups in your community, consider starting your own support group. A local rehab hospital can be of assistance in developing one, and may also help to put you in touch with other people in your community living with SCI.

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Integrate your disability into your new body image. Incorporate the spinal cord injury into a new positive selfimage. Lead a full life that focuses on its positive aspects, and find ways to bring meaning to your life. If competitive sports were an important part of your life prior to the injury, then look into ways to continue that involvement. These days there are many sporting events for people living with SCI, including wheelchair races, basketball, softball, and even rugby and marksmanship. Work toward goals. It is important to have a goal. Rehab is all about setting and meeting goals. Early in your rehabilitation, you and your therapists had goals for dressing, bathing, and wheelchair propulsion. Living with SCI involves constantly setting new goals, sometimes for the same problems. However, one goal that does not change is to be functional and independent for as long as possible. Other very worthwhile goals include the pursuit of more education (finishing high school, college, or graduate school). These days, many schools offer programs on the Internet. State vocational rehab programs are also good resources for discussing ways to further your career and education. If you are a veteran, you might also want to contact your local veterans hospital or paralyzed veterans group for further information. Find a hobby that gives you personal meaning. Hobbies are very important because they enrich the quality of your life. It is a good idea to nurture an interest that you already have. If you enjoy athletic competition, wheelchair games might be for you. If you are more interested in arts and literature but are limited in the use of your hands, consider books on tape. Increased accessibility to public transportation in major cities has made it possible for people living in wheelchairs to go to museums, movies, and theaters. If you live in such a city, take advantage of these possibilities. The recreation therapist at a local rehab

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facility can be a good resource for upcoming events. She may also arrange local outings and special trips that you might enjoy. Volunteer to help other people deal with SCI. Earlier in the Chapter 1 mentioned that living with SCI for many years has given you a great deal of wisdom about this illness. By volunteering to speak to newly diagnosed SCI survivors, you can give them a sense of hope and an idea of what their lives might be like many years from now. That is valuable information to impart to them. Contact your local rehab hospital’s volunteer department for more information. Volunteering to speak to non-SCI audiences is also a good way to use your knowledge to dispel myths about people in wheelchairs. Possible audiences include schoolchildren, medical students, and legislators. Take good care of your health. Don’t neglect your health. A healthy mind needs a healthy body. By minimizing your health problems, you can reduce the anxiety and stress that often accompanies poor health. Stop smoking, drinking, and using drugs. Check your skin regularly for pressure sores, and take care of them in a timely manner if they develop. Keep regularly scheduled appointments for health screening tests, such as mammograms and colonoscopies. Speak to your doctor about sleep problems. Sleep problems are very common in people living with SCI. Frequent turns, spasms, bladder catheterizations during the night, respiratory problems, and medication side effects can all affect your sleep. Poor sleep can, in turn, affect your mood, making you more irritable and anxious. Your doctor can review your medications and evaluate your sleep for potentially correctable problems. Ask your doctor to review your current medications. Certain medications can also affect your mood and psychological wellbeing. Pain medications, such as narcotics or gabapentin, can make you drowsy and affect your concentration and attention span. Realistically assess whether or not your current medications

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are helping you, and speak to your doctor about them. If you both agree they are not helping, he can stop them. If you are experiencing side effects, he may decrease them. However, never take it upon yourself to stop a medication on your own. Some medications (for example, baclofen) need to be slowly tapered; stopping them abruptly can lead to potentially serious side effects. Know when you need professional help. If you notice some of the warning signs mentioned earlier in this chapter (loss of appetite, profound sadness, willful neglect of your health, or suicidal thoughts) seek help at once. There are many ways these problems can be addressed with medications, psychotherapy, and counseling. Don’t isolate yourself. Ideally, you should try to live in an area where there is good public transportation, a local rehab hospital with experts in SCI, and where you and your family have strong social ties. An independent living center is another good option. If you are in your prime working years, consider a location where you can work in your chosen profession. If you are nearing retirement age, consider a location where cultural activities are within easy reach and are readily available to you.

References Butt L, Fitting M. “Psychological Adaptation” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications 1993:199–210. Depression: What You Should Know: “A guide for people with Spinal Cord Injury” Washington DC Paralyzed Veterans of America, 1999. Fichtenbaum J, Kirshblum S. “Psychologic Adaptation to Spinal Cord Injury” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:299–311.

General Textbook Whiteneck GG, Charlifue SW, Gerhart KA, Lammertse DP, Manley S, Menter RR, Seedroff KR. Aging with a Spinal Cord Injury. New York: Demos Publications, 1993.

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9 Wheelchairs: The Key to Mobility

The wheelchair is probably the single piece of equipment most identified with SCI. It has come to symbolize both the freedom and the restrictions of living with this disorder. You may use your wheelchair around your home, out in your community, or at work. You may use it to participate in sports, such as wheelchair races, basketball, or tennis. You may use it to go to museums, movies, or the theater. In other words, your wheelchair gives you the capability to pursue activities that enhance the quality of your life. However, this freedom may come at a cost to your body. Years of pushing a manual wheelchair can lead to injuries to your shoulders, elbows, and wrists, because your arms were never meant to be used as a substitute for your legs to achieve mobility. They are shorter, have smaller muscles, and have differently designed joints. Nevertheless, a good wheelchair is of paramount importance if you are restricted in your mobility. This chapter is an overview of wheelchairs that describes their components, some common types, and offers some practical advice regarding their use. Material used for this chapter was adapted in part from Wheelchairs/Adaptive Mobility Equipment and Seating, by Salerno and Kirschblum (see recommended reading). 109

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THE GOALS OF A GOOD MANUAL WHEELCHAIR A good manual wheelchair should achieve several goals: ■

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It should provide you with a good cushion that decreases pressure over pressure-sensitive areas, thus minimizing your risk of developing pressure ulcers. It should provide good support for your entire body and accommodate areas that have contractures (hips, knees, and ankles) or abnormal curvatures of the spine (scoliosis). It should be easy to use. A manual wheelchair should also be lightweight and easy to propel with your arms.

Components of a Wheelchair All wheelchairs have seven main components—armrests, seating system, foot/leg rests, frame, tires, brakes, and casters (small wheels). Each one of these components comes with different options, each with its own advantages and disadvantages. Before deciding which option is best suited for you, a wheelchair specialist and a physician will review your medical record and perform an evaluation. The medical record provides information about the extent of your SCI involvement. This is important because your wheelchair needs if you are a paraplegic are different from those of a quadriplegic. Other important information includes a history of pressure ulcers, heart or lung problems (heart attacks, congestive heart failure, or emphysema), and bladder and bowel incontinence. The physical examination focuses on your trunk control, extent of spasticity, presence of abnormal curvatures of the spine (scoliosis, kyphosis), contractures, strength, and sensation in the limbs. Careful attention will be given to the skin in your buttock area to assess the risk of developing a pressure ulcer. The wheelchair expert may have you sit on a special “pressure mapping” device that provides computerized readings of the pressures generated under your buttocks as you are sitting. This information is used to provide you with the best pressure-relieving seating cushion available.

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In addition to data obtained from your medical history and physical examination, your wheelchair specialists will need you to provide them with other important information, including how you plan on using the wheelchair, where you plan on storing it, and your current means of transportation. Your input is a very important part of the process. Let the wheelchair specialist know how you currently use your wheelchair and what activities you would like to participate in. What are the limitations to your current wheelchair (i.e., hard to maneuver in a small apartment)? Is it too heavy for your spouse or friend to lift in and out of a car? Is there a particular color that you would prefer? Are you planning to move to a different home environment in the future? Are you planning on purchasing a different type of automobile? Several different types of manual wheelchairs are currently available. Some are primarily used for sports, while others are used mainly for traveling short distances around a home or community. Wheelchairs used for sports tend to emphasize ease of use and lightweight components, but often at the price of decreased stability (they are more likely to tip over). It is important to let your wheelchair specialists know where you plan on storing your wheelchair. If you live in a small apartment, or in a building that has limited wheelchair accessibility, you may have difficulty storing a large power wheelchair. Your current means of transportation also provides important information. If you plan on transferring in and out of an automobile on a frequent basis, you need to tell your wheelchair expert whether you have a car or a van. If you have a car, does it have two doors or four doors? Do you plan on driving the vehicle or will you be primarily a passenger? Last, where are you planning to use the wheelchair? Will it be used primarily inside your home, or will you be going out into the community? If community use is anticipated, does your area have many hills or rough terrain? Once the assessment is complete, you and the wheelchair expert can discuss the various components you can choose from. You should be pre-

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pared to compromise on some of the things you want and need. For example, the seating cushion is more important than the color of the wheelchair. This next section discusses the main components of a manual wheelchair.

Seating System The seating system is made up of all the parts of the wheelchair that your body comes into contact with (legs, back, buttocks, feet). A good cushion should provide pressure relief, absorb heat, and be able to maintain its shape despite the pressures placed on it. Cushions consist of foam, gel, or air, or a hybrid combination. There are advantages and disadvantages to all types of cushions. Foam cushions have the advantage of being lightweight and inexpensive. However, they typically last no longer than six to twelve months and can lose their ability to provide adequate pressure relief in certain areas. If you have a foam cushion, you should have it checked every few months to ensure that it is still providing you with adequate pressure relief. Gel cushions provide a very good seating surface. Their shapes change in response to the shape of your buttocks. However, they are heavy. Air cushions can also provide good pressure relief and change their shape to accommodate to your buttocks. They are also lightweight. Their main disadvantage is air loss if there is a puncture, or inadequate pressure relief if they are underinflated. In addition, there can be increased instability when sitting on air cushions (commonly referred to as a “swimming effect”). You may find that your buttocks move around a great deal on the cushion. This can make it difficult for posture control. Hybrid cushions attempt to combine the best features of the above materials. For example, foam can be combined with gel or air. However, these combinations can add to the weight and cost of the seat. The back of the wheelchair provides varying amount of support for the trunk. A low back is often recommended if you have good trunk con-

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trol, because it provides you with more freedom of movement. A high back is recommended if you have poor trunk control and require more support. A very sturdy back provides good support and pressure distribution, whereas sling back types do not offer a great deal of support. On the other hand, sling backs are easier to fold, thereby making the wheelchair more portable. The longer you use a sling back, the less support it provides. It eventually may start to resemble a hammock, which can lead to poor posture. A good cushion can often prevent this. Indeed, many posture problems can be corrected through seating modifications. The seating system of your chair is extremely important. A poor posture while sitting can lead to increased pressures over bony, pressure-sensitive areas, increasing your risk for developing pressure ulcers. It can also negatively affect the curvature of the spine. An abnormal curvature of the spine (scoliosis) can be worsened by poor posture in a wheelchair and that, combined with poor trunk control, can even cause difficulty breathing. Poor posture while seated can also lead to contractures of the limbs, an especially high risk if you have spasticity and limited movement in the legs. You may also experience difficulties reaching for objects with your hands and arms, thereby limiting your function.

Armrests Armrests serve several functions: They make it easier to perform weight shifts and, therefore, can be used to help prevent pressure ulcers, and they support your arms and trunk, which is especially important if you have poor trunk control. They can also provide a firm surface while performing transfers and serve as an attachment site for cups and other equipment. There are several different types of arms rests. Some are fixed to the wheelchair, whereas others can be removed. Some are made out of lightweight material and provide little support, whereas others are made out of heavier materials.

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Removable arm rests can be advantageous when performing sliding board transfers, because once they are removed, there is more room to perform the transfer.

Leg/Foot Rests The main function of leg and foot rests is to support the legs when the wheelchair is in motion or standing still. There are three different types of leg rests—swing away, fixed, and elevating. The advantage of swing away leg rests is that they can be pushed away from the wheelchair (also removed), making it easier to perform transfers. Fixed leg rests support the legs, but in only one position, and they are somewhat more cumbersome to use. They can also make it more difficult to perform transfers in small areas. The proper placement of footrests is an important part of the wheelchair assembly. If they are too low, you will slide out of the wheelchair. If they are too high, your thighs will be elevated off the seat, placing greater pressure over the tissues overlying the bony parts of your pelvic bones (the ischial tuberosities) and increasing your risk of pressure ulcers in that region.

Frame The frame of a manual wheelchair provides its structural support. It comes in two basic types—rigid and folding. The folding type has the advantage of being easier to transport, but it is heavier, has more parts, and is not as durable. The advantages of the rigid frame are that it is more energy efficient, has fewer parts, is lighter in weight, is more durable, and is easier to maneuver in small spaces. Its disadvantages are that it is more difficult to transport and has a rougher ride.

Wheels/Tires/Hand Rims Wheels come in two basic types—mag or spoke. Mag wheels, which are made of plastic, are very durable and do not require maintenance.

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However, they can be heavier than spoke wheels. Spoke wheels, on the other hand, require more maintenance. The tires are fitted onto the wheels. The type of tire you will need depends on where you will be using the wheelchair the most. Air-filled treaded tires are better suited for the terrain you will encounter on a daily basis. Lightly treaded tires are better suited for indoor athletic competition because they provide less resistance when pushed across a floor. Some tires have a foam material inside instead of air. They have a harder ride, but require less maintenance, because the tires are less likely to become flat. Newer types of wheels have the advantage of being able to roll for longer distances with one push. This can reduce the stress and work performed by the arms and shoulders. The hand rims are located on the outside of the wheels. They are used to push the wheelchair, although many of my patients tend to push the tires, rather than the rims.

Brakes/Wheel Locks Brakes are used to lock the wheels of the wheelchair, a most important advantage when you are attempting to transfer out of the wheelchair to a different surface. You don’t want the wheels to move as you are performing the actual transfer. Brakes come in different styles, the two most common ones being “push/pull” and “scissor.”

Casters Casters are the two small wheels located in the front of the larger wheels. Their main role is to improve the wheelchair’s ability to turn. The smaller they are, the tighter the turn. The bigger they are, the wider the turn. Bigger casters are better suited for outdoor use and smaller ones are better for indoor use.

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IDEAL SEATED POSITION Your ideal position in a wheelchair should be as follows: ■ ■ ■

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Your hips and knees should be bent at about 90 degrees each. Your thighs should be slightly spread apart. The normal curvatures of your spine should be preserved. Abnormal curvatures that cannot be corrected should be accommodated. Your head should be directly over the pelvis, the eyes looking directly ahead and level.

SPECIAL WHEELCHAIRS Some conditions require a special wheelchair that can be manually reclined or can tilt in space. One such condition is an impaired ability to perform weight shifts on a frequent basis due to poor arm strength and/or trunk control. This can lead to increased pressures on pressuresensitive areas over the pelvic bones and the low back, which increases the risk of pressure ulcers. A reclining wheelchair can also benefit patients who suffer from poor trunk control, or from dizziness when in the upright position due to low blood pressure (orthostatic hypotension). In a manually reclining wheelchair, the back is tilted backwards while the seat remains fixed in one position. The amount of tilting varies between 30 and 90 degrees. The major disadvantages to this type of system are its weight, length, and bulk, as well as an increased risk of shearing forces generated across the buttocks. A Tilt-in-Space wheelchair is a good alternative. In this system, the seat and the back tilt together as one unit up to 65 degrees.

POWER WHEELCHAIRS The main advantage of a power wheelchair over a manual wheelchair is that it does not require much effort to operate. It helps to maintain your

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mobility in the home and community when you are having difficulties pushing a manual wheelchair, and this, in turn, helps you maintain a good quality of your life and your independence for as long as possible. The common indications for a power wheelchair are as follows: ■

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Mobility. Mobility needs that cannot be met with a manual wheelchair due to muscle weakness in both the legs and arms associated with SCI. A power wheelchair device may also be indicated when a person can no longer push a manual wheelchair for long distances due to pain in the arms, or a medical condition, such as heart disease or emphysema, precludes it. Poor trunk control. Poor trunk control that makes it difficult to sit in a manual wheelchair. Significant curvatures of the spine. Scoliosis and kyphosis, which can make it difficult to sit in a manual wheelchair.

There are different ways to get external power to propel a wheelchair. One is to install a motor unit into the hubs of the wheels. This motor is powered by a battery and operated by a joystick or by pushing on the wheel rims. The disadvantages to these systems are that they place a greater stress on the frame of the manual wheelchair and are not as durable, but they might suit your needs if you are not quite ready to give up the manual wheelchair and are looking for something that will give you extra help going up hills. Some manual wheelchairs are designed with extra space for a battery that can be removed, making it easier to transfer the wheelchair in and out of a car. Nevertheless such wheelchairs are still heavy and difficult to take apart on a daily basis, and are also not very durable. However, they have two advantages over the units mounted into the hubs of wheelchairs. They are sturdier and can be used on different terrains. Power wheelchairs can also come as intact units that have the same components as a manual wheelchair with a motor unit stored underneath. This type of wheelchair has adjustable speed, but is wide and can break down.

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Due to the highly individualized nature of the seating system, some power wheelchairs have separate “modular power bases” upon which the seating system can be custom made. Such a system offers the advantages of greater power and speed as well as improved durability, and the chairs are also better for outdoor use since they have better traction. Modular power bases can have the wheel in the front (front-wheel drive), in the middle (mid-wheel drive), or in the rear (rear-wheel drive) of the wheelchair. The rear-wheel drive models have a greater sense of control, greater speed, and stability, but they can tip over if you are traveling up a steep incline, a problem that can be addressed by attaching an anti-tipping device. These models also need more room to make turns when compared to the mid-wheel or front-wheel power bases, so they may not be indicated for use in a small apartment. The mid-wheel power base requires less room to make turns, so it can be used in smaller spaces. However, such chairs are not as stable and can tip over in the front. The advantages of a front-wheel power base are that it can be used in small spaces, since it requires less room to make turns than the rear-wheel model, and it provides better traction over rougher terrain. As I mentioned earlier, power wheelchairs have components similar to manual wheelchairs. They have armrests, leg/foot rests, seating systems, and wheels. However, power chairs also have headrests and tilt-in space capability. The armrests are designed to provide greater support for paralyzed limbs. The leg/foot rests are designed to provide good leg support without increasing the risk of pressure ulcer formation. The wheels come in different sizes, with the smaller ones being better suited for turning in small spaces and traction on rough terrain. They also provide increased power. The back of the seating system comes in sling back or solid back type, and the solid back type can be shaped to conform to your back if you have a spinal deformity.

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The tilt in space capability is a very good feature if you cannot perform weight shifts on your own. It increases your independence, because you don’t have to rely on others for assistance with this task. There are many ways to operate a power wheelchair, including joysticks, “sip and puff” systems, and head control systems, to name a few. These are very individualized systems, so before you decide on one, it is best to discuss your particular needs with a wheelchair specialist in a rehab facility near you.

TRAVELING WITH A WHEELCHAIR Early in the chapter I mentioned that it is important to let the wheelchair specialist know what kind of car or van you drive. After reading the past several pages, you can appreciate that not all cars can accommodate all types of wheelchairs. For example, a small, two-door automobile cannot transport a power wheelchair with all the options. You may have the unpleasant surprise of being told that, instead of the manual wheelchair that you have been using for many years, you will now need a power wheelchair and a modified van to accommodate it! That is why, in a separate chapter on financial issues, I urge you to plan for this possibility someday. On the other hand, manual wheelchairs can be accommodated by most automobiles. I have had patients who had the foresight to purchase two-door cars with extra large doors (many American cars built in the 1970s had such doors). Once having transferred inside the car, you can disassemble the wheelchair, pull it across your lap, and place it in the front or back seat. A car topper has a mechanical lift that takes a manual wheelchair and lifts it into a storage container on top of the car. Other types of manual wheelchairs with batteries are heavier and require greater effort to disassemble and store in a trunk, even with a trunk lift. You need a van to transport a power wheelchair, because the power wheelchair is heavy, wide, and bulky (see Chapter 10 on Vans and

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Minivans). The van needs to have a mechanical lift (or ramp) and a system to lock the power wheelchair in place during travel.

Travel Tips Wheelchair accessibility on public transportation has improved greatly over the years. Bus and train systems have made extra efforts to accommodate people living with wheelchairs. If you are planning on traveling by airplane, you will probably have to store the power wheelchair underneath the plane in the luggage compartment. You should remove the joysticks and any other devices that may get damaged during travel. You should also check with the airline on the types of batteries that they allow on board. Airlines often require gel batteries instead of lead acid batteries.

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A wheelchair is not a symbol of identity, it is just a means of getting around! The implication here is that you should not be afraid to get rid of a manual wheelchair if deep down you know that a power wheelchair will help you get around easier and with less pain. Find something else to be a symbol of who you are! Always check the seat cushions, especially if you have a history of pressure ulcers! Seat cushions can lose their ability to protect you from developing pressure sores. Just because you have a seat cushion does not mean that it is adequately doing its job. You should speak to your wheelchair expert on how often you need to come in to have your cushion checked, since each model is different. Remember, foam cushions only last between six to twelve months. A change in your medical condition may mean a change in your wheelchair needs. Increased weight, spasticity, curvature of the spine, and contractures can all affect how you sit in a wheelchair. If you suffer from any of these conditions, you should speak to

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your doctor about ways to correct them. If they cannot be adequately corrected, then your wheelchair needs to be re-evaluated to ensure a good fit. A history of heart attacks can make manual wheelchair use more difficult and dangerous. A power wheelchair may be more appropriate to keep you functional and independent for as long as possible. Every option available on a wheelchair involves a trade off. “You gain something and you lose something”—Ziggy Landsman, a noted expert in the field (personal communication). For example, wheelchairs used for sports are lighter and easier to maneuver, but are less stable.

References Accessible Air Travel: A Guide for People with Disabilities, Jackson Heights, Eastern Paralyzed Veterans Association. Salerno S, Kirshblum S. “Wheelchairs and Adaptive Mobility Equipment and Seating” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:578–599. Ziggy Landsman: Personal Communication, 2003.

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10 Vans and Minivans

Chances are that, at some point after your spinal cord injury, you considered driving a car or a van. You may even have pursued driving with a specially trained therapist and gone as far as purchasing a modified car or van. In this chapter, I will discuss some of the pros and cons of driving a modified vehicle with a spinal cord injury and, I hope, address some concerns you may have.

HOW TO KNOW IF YOU SHOULD CONSIDER GETTING A MODIFIED VAN You should perform an honest assessment of your activity level when considering whether or not to purchase a modified van. Some issues to take into account include: ■

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Does your lifestyle demand a high level of mobility in the community? Does your job require a great deal of car travel? Do you and your family drive together frequently? If you are paraplegic, is it becoming more difficult to transfer in and out of your car? Is it becoming more difficult to transport your manual wheelchair? 123

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A modified van can help you achieve a greater level of independence. However such a van is very expensive and requires a larger than average parking space. In addition, it may be difficult to park in some garages due to its added height.

SPECIFIC DRIVING CONCERNS OF PEOPLE LIVING WITH QUADRIPLEGIA In order to drive a modified van, you must have some shoulder, elbow, wrist, and hand function in at least one of your arms. Adequate strength in the muscles surrounding those joints is also important if you are to successfully operate the various controls of the vehicle. Accelerating and braking the vehicle typically requires adequate muscle strength in the shoulder to execute forward and backward motions. Turning the vehicle requires strong forearm muscles that can turn the wrist left and right. Operating various vehicle controls (radio, air conditioning, heater) requires the ability to manually push buttons, or to operate these controls by using a pencil-like device that is attached to a wrist brace. Some medical concerns take on special importance when driving a vehicle. Spasticity, contractures, decreased strength in the arm used for driving, side effects of medications, and decreased vision are some of the most important ones. Spasticity is a common condition after spinal cord injury. Its treatment was in greater detail earlier in the book, but you should take note of the fact that, if the spasms in the arms are not adequately controlled, it could have a negative impact on your ability to drive. Contractures are the end result of decreased range of motion in a joint. In spinal cord injury, contractures are typically associated with spasticity, weak muscles, and lack of use. Contractures of the shoulder, elbow, and/or wrist are of particular concern in driving an automobile or a van. Weakened shoulder and forearm muscles can impair driving, since these muscles are often needed to accelerate, brake, and turn the vehicle.

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In addition, pain in the shoulder from inflamed, arthritic, or torn tissues can limit arm function during driving. The medications commonly prescribed for spasticity, bladder control, and pain can cause drowsiness, which in turn can impair function, so if you are planning to drive, it is important for you to discuss the side effects of your medications with your doctor. He can eliminate some of them, decrease their dosage, or alter their administration schedule.

SPECIFIC DRIVING CONCERNS OF PEOPLE LIVING WITH PARAPLEGIA Pain in the shoulders, elbows, and wrists, which are very common problems in paraplegics, are primarily caused by overuse of the arms for wheelchair propulsion. This can make transfers in and out of cars and lifting your wheelchair into the car after the transfer more difficult and painful.

YOUR DOCTOR AND PHYSICAL THERAPIST CAN HELP YOU GET READY FOR DRIVING Your physician can help with the medical management of spasticity. He can evaluate your shoulder, elbow, or wrist pain as well as your medication regimen and make changes as necessary. Possible interventions include injections, medications, physical therapy, and braces. Your physical therapist can work on strengthening your shoulder, forearm, and wrist muscles. He can use stretches, heat, ice, or electrical stimulation to manage pain and improve range of motion in the arm joints. He can also evaluate your ability to transfer in and out of a car and make recommendations to make it easier. A driving trainer is an important member of the rehab team. She can help you learn new driving skills or refresh old ones. She can also evaluate your vision and make recommendations regarding appropriate modifications for your current vehicle or needs for a new one.

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THE DIFFERENCES BETWEEN A REGULAR VAN AND A MODIFIED VAN A modified van or minivan typically requires a raised roof and a lowered floor to make it easier for you to move around inside while you are still in the power wheelchair. Access in and out of the van requires a wide door that can accommodate a lift—typically a platform lift on the side of the van—or a ramp. Once inside the van, you have to maneuver the wheelchair to the driver’s side of the vehicle (there is no driver’s seat) and lock it in place via special attachments located on the floor. This keeps it from sliding while you are driving. All vans have many switches on or around the dashboard that control the air-conditioning, radio, lights, and signals, to name just a few. In a modified van, a console with buttons for the controls is located near the driver, so that if you want to operate the air conditioning, for example, you simply press a button with a special device attached to a wrist or hand splint. Typically, you accelerate and brake by pressing forward or pulling back on a modified steering wheel, arm-cradling device, or horizontal push-pull device. Turning is accomplished by small turns of the steering wheel or, alternatively, by turning the forearm with the palm facing up or down while it is positioned in an arm-cradling device. Visibility is obviously very important, and therefore, there are many strategically placed mirrors throughout the vehicle.

THE DIFFERENCES BETWEEN A MODIFIED MINIVAN AND A MODIFIED VAN There are several advantages and disadvantages to owning a modified van or minivan. The minivan is smaller than a van, is easier to maneuver in and out of parking spots, and has better visibility when compared to vans. Some say that it also has a more pleasant and contemporary appearance.

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On the down side, however, the inside of a minivan is typically small, making it more difficult to maneuver a wheelchair, and it may not comfortably fit other family members. Moreover, since the floor has to be lowered, the ground clearance is not very good, which makes driving on rough terrain or snow more difficult. However, I am told that some minivan conversions include a mechanism that can raise and lower the floor as needed. Minivans typically have ramps for wheelchair access, but it may be difficult to push a manual wheelchair up a ramp in snow or rain. In addition, pushing your wheelchair up a ramp may aggravate shoulder problems and cause pain. The main advantages of the modified van compared to the minivan relate to its larger size. Since there is more space inside, there is more room to maneuver a wheelchair, and family members can ride more comfortably. There is often a power platform lift, which makes it easier to get in and out with a power wheelchair. Also, the ground clearance is better, so it is easier to drive on rough terrain or in snow. The disadvantages of a modified van are also related to its increased size. It has more limited visibility, and it can be more difficult to drive and park. In fact, if the ramp door is located on the side of the vehicle, you may need two parking spaces to adequately exit, although this problem can often be avoided by having the exit door with the lift located at the back of the vehicle. Lastly, a van may not be as attractive in appearance as a minivan, but can last many years with good maintenance.

THE COST OF A MODIFIED VAN A modified van can be very expensive. The van itself costs approximately $20,000–25,000, and the modifications can add an additional $50,000–70,000. Since very few individuals can readily afford such a vehicle, there are some resources that you may want to consider: ■

If you sustained the spinal cord injury while you were on active duty in the armed forces, you may be entitled to some veterans’

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benefits that can assist with some of the costs of the van and modifications. If you are either working or planning on returning to work, check with your state’s vocational rehabilitation office. They may be able to help you identify resource that can assist with some of the costs of the vans and/or modifications.

On the plus side, a modified van can last many years with good maintenance.

CHALLENGES ENCOUNTERED BY THE SCI PERSON DRIVING AN AUTOMOBILE A spinal cord injured person who is driving a car faces several unique challenges, the first and foremost of which is transferring in and out of the vehicle. Since this maneuver can be difficult if you have shoulder pain, you may want to consider a sliding board to help you. In addition, you may want to consider taking a refresher course in car transfers from a local spinal cord injury rehab center, which may be done in conjunction with medical treatment for your shoulder pain. If you are considering purchasing a car, then you may want to consider a bigger car with large doors to give you more space in which to perform your transfers. Putting your wheelchair in the car after transferring may also be a challenge if you have shoulder problems or weakness in the arms. Even the lightest wheelchairs can weigh 20 pounds or more, so you need strong arms to lift them and place them inside. Nowadays, there are external storage mechanisms that can pick up the wheelchair and place it in a storage bin mounted on top of the car. Once inside the car, your legs may bang against the steering wheel, causing them to bruise. You can avoid this by adjusting your steering wheel to a higher position. You should also have a rehab professional evaluate your driver’s seat to make sure there is an adequate amount of pressure relief. If the seat is

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older, there may not be, and this can predispose you to pressure ulcers. You may need an extra cushion, but this can cause you to sit higher and limit your visibility, so it may be necessary to install additional mirrors in the car. Hand controls for the accelerator and brake are mounted on the steering column under the steering wheel. It is a good idea to periodically meet with a driver trainer who specializes in spinal cord injury to assess your current car controls and determine if they are operating well. The driver trainer may also be able to give you a refresher driver-training course if you should need it.

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A modified van or mini-van can be very useful in maintaining your level of independence in the community. Quadriplegic patients need adequate shoulder, forearm, and wrist strength to operate the controls of a modified van. A good strengthening and range of motion physical therapy program should be a part of a driver-training program. Spasms of the arms should be adequately controlled prior to driving an automobile. Weakness of the arms can be aided by reduced-effort steering and/or braking modifications. An experienced driver training expert can be of great help in making your driving experience as safe as possible.

References Jimmy Nichols: Personal Communication, 2003.

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11 A Fresh Look at Rehabilitation

Soon after sustaining your SCI, you probably spent some time in a rehabilitation facility. During that time, you worked on strengthening the parts of your body that were weak and found ways to compensate for the parts that no longer functioned. Your doctors, therapists, and nurses taught you techniques to make you more functional and independent so that you could care for yourself in the community. Alternatively, if you could not care for yourself, they taught you how to direct your caretakers. The information you learned in your initial rehab experience was meant to give you and your family skills that could be used immediately upon discharge. Now you may be finding that the techniques that were useful when you were first discharged from the rehab unit, don’t work as well anymore. Your needs change as you get older. For example, shoulder pain can make transferring in and out of a car more difficult than it once was. Catheterizing your bladder can be more difficult if your vision and hand dexterity are not as good as they once were. Consequently, you should think of rehabilitation as a lifelong learning process and one that may require returning to the rehab unit or clinic on a periodic basis. The 131

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rehab doctors, therapists, and nurses are your teachers. They can teach you new skills, and refresh your knowledge about old ones.

CONSIDER A REHABILITATION REFRESHER COURSE If you are experiencing a decline in your function, or it is becoming increasingly difficult to manage on your own in the community, consider a rehab refresher. Talk to your doctor about your concerns. A rehab refresher that focuses on specific issues can be of considerable help, and it can be undertaken either in an outpatient clinic or as an inpatient on a rehab unit. Consider a rehab program at a facility that is experienced in caring for people living with SCI. Such a facility will have a team of rehab experts that can assess your current needs and make recommendations. For example, a rehab doctor can adjust your anti-spasticity medications and check your bladder function. A rehab nurse can review your current bowel and bladder program. A therapist can work on strengthening your shoulder muscles. A wheelchair expert can evaluate your wheelchair for adequate pressure relief. Meanwhile, your significant other can have a respite and can also get guidance from the staff on how to care for you more effectively. Think of it as one-stop-shopping for all your rehab needs! Of course, you will have to check with your insurance carrier to make sure that this is covered by your insurance plan.

IF YOU DECIDE TO PURSUE A REHAB REFRESHER, BE INVOLVED IN SETTING THE AGENDA FOR THAT PROGRAM Chances are that, at the time of your SCI, you did not have much say in your rehab program. Everyone asked you basic questions about your life prior to the injury (the number of steps to get in and out of your house, the type of work you did, as well as the level of independence you had

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with dressing, bathing, etc.) You probably didn’t know what other questions needed to be asked! However, as you matured, you have become more knowledgeable about your condition. Now you know which bowel routine works best for you and which manual wheelchair is the lightest. Your needs are also different now. You may be married and considering starting a family; or you may be older, retired, and your spouse is having difficulties caring for you. Perhaps your bowel program has become increasingly difficult to perform, or shoulder pain is limiting your car transfers. Aging with SCI has made you a more sophisticated consumer of rehab services. When you get to the rehab center, ask them how to address the issues that are most important to you!

AS YOU GET OLDER, YOUR BODY FACES NEW CHALLENGES The strength in your limbs may diminish for a variety of reasons—lack of use, a sedentary lifestyle, or nerve injury, to name a few possible causes. Your stamina for everyday activities may also be diminished by complications from heart disease, diabetes, and other common health problems. This doesn’t mean that strength and endurance can’t be improved. On the contrary, your weakened muscles can very often get stronger through a good strengthening and aerobic training program. However, such a program may need to be slower and less intense than it was when you were younger. Don’t hesitate to ask your therapists for breaks during your therapy sessions. If you get tired after 30 minutes, ask them to make each session less than 30 minutes. If your physical and occupational therapy sessions run back to back, ask the therapists to space them further apart.

NEW SKILLS CAN TAKE LONGER TO LEARN Be patient, and have the therapists break down any new skills into small, easily understood steps.

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FOCUS ON ADAPTIVE EQUIPMENT Your equipment needs can change as you get older. For example, immediately after your SCI a manual wheelchair may have met your mobility needs quite adequately. However, now that you are getting older, shoulder pain is making it difficult to push a manual wheelchair for long distances. You may now need to consider a power wheelchair and/or a modified van.

YOUR CAREGIVER SHOULD ATTEND A REHAB REFRESHER WITH YOU Your caregiver should attend your therapy sessions as much as possible. She can learn new techniques and skills for transfers, dressing, bathing, grooming, and hygiene. These in turn will make life easier for both of you when you return home. It also gives your caregiver an opportunity to voice her concerns to a team of professionals that can offer practical advice, as well as provide information about local support groups composed of families that face similar challenges.

BE SPECIFIC WITH YOUR CONCERNS TO THE REHAB TEAM Your doctors, therapists, and nurses are not mind readers. If you and your partner have questions about improving your sex life, you should ask them. If you have concerns about parenting a child, ask them. Most large medical centers specializing in spinal cord injury have access to resources that can address these issues.

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References Butt L, Fitting M. “Psychological Adaptation” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications 1993:199–210. Gerhart K. “Changing the Adaptive Environment” In Whiteneck Gale G et al ed., Aging with a Spinal Cord Injury. New York: Demos Publications 1993:343–352. Menter R. “Changing Rehabilitation Philosophy for Aging” In Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications 1993:327–332.

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12 Managing Your Finances

This chapter could be summarized with one statement: Work and save money for as long as you can! Your ability to stay independent as long as possible is directly correlated with your earning power, which can provide the resources to pay for attendants, supplies, or a modified home and van if necessary. I realize that this is easier said than done, and there are statistics to support this. Most people living with spinal cord injuries do not work, and there are many reasons for this. To begin with, you probably spend a considerable amount of time on your daily personal care. It may take you several hours each day to perform your bowel and bladder routines, get dressed, eat, and then go to work. Doctor visits can also require a great deal of time during the work week. If you are like most people with spinal cord injuries, you most likely sustained yours either during your school years or during the most productive working years of your life. You probably had given little or no thought to the possibility of being injured in such a life-altering way, so your education may not be at the level that many jobs require. As a result you may need more education and retraining, which may be difficult to acquire due to financial, health, or family considerations.

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Compounding these problems are the high costs associated with your daily care. Home health attendants, doctor visits, medications, and catheters are all expensive, yet they are a crucial part of your daily function. Lastly, you function on a much “thinner margin of good health” than your non-spinal cord injured counterparts, which means that it doesn’t take very much to make you very sick. For example, you may be functioning very well until you develop a pneumonia that may require a hospitalization that may be lengthy and leave you weaker than when you came in. As a result, you may need additional rehab to get you strong again. All this takes time, which can interfere with your work and career. So what to do? First, don’t despair! Realize that you need to make some money to maintain your lifestyle and independence and act accordingly. Below are some suggestions.

GET AS MUCH EDUCATION AND TRAINING AS YOU CAN It is never too late to learn new skills that will keep you working. Contact your state’s vocational rehab department to see how they can assist you. Many rehabilitation hospitals also have a vocational counselor on staff. Consider taking courses online. A local librarian may be of assistance in identifying the many online education programs that are out there.

CONSIDER WORKING FROM HOME AS MUCH AS POSSIBLE If you are like many people with spinal cord injury, you spend a great deal of time on your daily routines (bowel/bladder care, dressing). As a result you are tired even before you even get to work. However, we live in an era of computers, Internet, faxes, and cell phones. Perhaps you can work from home, using this technology to your advantage. Speak to your employer about this possibility.

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CONSIDER WORKING PART-TIME If full-time employment is too difficult for you to handle, consider working part-time.

USE YOUR ATTENDANTS WISELY Honestly assess when you need an attendant the most. If you have to be at work at 9:00 AM and don’t need another attendant until the evening, then have the morning attendant perform as many tasks as possible before leaving. This may cut out the need for additional help at other times of the day or week.

PLAN FOR RETIREMENT EARLY ON We are living in a time when the life expectancy of a person living with a spinal cord injury is comparable to most of the non-SCI population. Therefore, you should meet with a financial planner to discuss what you anticipate your financial needs will be as you get older and identify ways for you to meet them. Some of the things you should consider in your financial planning are the following: ■ ■

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A need for more attendant help as you get older Modifications to your existing home or a need for a different modified home A modified van A power wheelchair if you don’t have one at this time.

KNOW YOUR HEALTH CARE POLICY VERY WELL Become a knowledgeable and educated advocate of your needs. Find out what your plan’s policy is on home health attendants, durable medical equipment, rehab services, nursing home stays, and other services. You should also be knowledgeable about Medicare and Medicaid, since at

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some point in your life you may find yourself covered by one of them. This is addressed in greater detail in another chapter.

References Corbet B. “What Price Independence?” In: Whiteneck Gale G et al eds.,Aging with a Spinal Cord Injury. New York: Demos Publications , 1993:219–227. Dejong G, Brannon RW, Batavia AI. “Financing Health and Personal Care” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications 1993:275–294. Gerhart KA. “Personal Perspectives” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications, 1993:239–249. Reynolds GG. “Becoming Successful Health Care Consumers” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications, 1993:229–238. The Keys to Managed Care: A Guide for People with Physical Disabilities. NRH Center for Health and Disability Research, National Rehabilitation Hospital and the Medstar Research Institute Washington, D.C. © 2000. National Rehabilitation Hospital Center for Health and Disability Research, Paralyzed Veterans Association, Inc.

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13 Insurance Issues

Growing old with SCI means facing a number of new challenges. Gerben Dejong has outlined many of these challenges in a chapter published in Aging with a Spinal Cord Injury. Dr. Dejong describes the five major challenges as follows: 1. You have a thinner margin of good health. As a result, a minor infection in the lungs or kidneys or a small pressure sore can rapidly worsen, leading to a change in your medical and functional status that may even require hospitalization. 2. Recovery following one of the above conditions can take a long time, during which you may need more medical and attendant assistance. 3. New illnesses associated with growing older, including chronic diseases such as heart disease, diabetes, and high blood pressure, can have profound effects on your health and ability to function. As a result, you may require medical management more often. 4. There may be an increased need for assistive devices and rehab services as you get older. Your manual wheelchair may be more difficult to use, so a power wheelchair may become necessary. A chronic shoulder problem can require periodic physical therapy, injections, or surgery. 141

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5. You may have an increased need for home health attendant services due to an increased need for assistance with activities of daily living such as dressing, grooming, and bowel and bladder routines. Dealing with health insurance companies can be a daunting task for anyone, especially if you have a chronic illness like SCI. Growing old with SCI can mean an increased number of medical provider visits, hospital and/or nursing home admissions, medications, adaptive equipment, and personal assistants. This can place a significant financial burden on you and your family at a time when your financial resources are fixed or decreasing. Consequently, it is more important than ever to know as much as possible about your health insurance plan. Insurance companies are not all the same. They each have their own policies and stipulations for the services they do and do not cover. In this chapter, I cover some of the basic principles of Medicare, Medicaid, and managed care. I also address their advantages and disadvantages with respect to SCI. Much of the material I will be discussing comes from the work of Dr. Dejong, cited above, and from a publication entitled: The Keys to Managed Care: A Guide for People with Physical Disabilities. This latter publication discusses successful strategies that people living with disabilities can employ when dealing with their insurance companies.

HEALTH INSURANCE BASICS The responsibility of a health insurance plan is to pay a percentage of your health care bills. Since health care bills can be very high, the payments the plan has to make are often quite substantial. Your responsibilities are to pay a fixed premium every month, a percentage of the cost of the services you receive, and a yearly deductible. Given the high cost of healthcare, it is obviously in your interest to have an insurance company pay for as much of your healthcare costs as

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possible. However the high cost of healthcare also concerns the insurance companies, who are caught between wanting to pay for your healthcare and also wanting to keep their costs down. Hence, the conflict. Managed care companies and HMOs often have lower premiums initially, but they often require that you use the physicians and hospitals with which they have contracted to provide health care. These providers have agreed to fixed fees from the HMOs in exchange for providing care to their members. Physicians in an HMO have varying amounts of knowledge about SCI. This, in turn, can impact on your care. If you need to see a physician outside the plan, you may have to pay a substantial portion, or all, of that physician’s fee. For plans that give you greater freedom in selecting physicians outside the network, you will probably have to pay a higher premium and incur more out of pocket costs. HMO’s can also vary in their coverage of rehab services and admissions to a rehab unit or hospital. They can also limit the amount of attendant or nursing home care, or reimbursement for medical equipment. ■

Medicare. Medicare is a federal program that covers many of the healthcare costs incurred by people over the age of 65. It also offers coverage to people under 65 who have certain physical disabilities (after they have received social security disability for at least 24 months) and/or kidney problems. Medicare Part A covers costs associated with a hospitalization in a medical center or a nursing home. Medicare Part B covers physician costs. There is a co-payment of 20 percent of your medical costs. Hospitalization expenses are covered for the first 60 days, and you will be required to pay a small portion of the cost. Medicare is a very good reimbursement program for acute medical care; however, it more limited when it comes to chronic care. For example, if you require acute medical care for a pressure sore, Medicare covers the costs associated with that hospitalization, including physician fees and inpatient medications.

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Medicare also covers short-term inpatient and outpatient rehabilitation, and short-term home care if you become significantly weakened as a result of that hospitalization. The home care can include the services of a physical therapist, occupational therapist, speech pathologist, or coverage of a home health attendant (somewhat limited). In addition, Medicare covers a short-term nursing home stay if it is associated with an acute medical illness. It pays for all costs of the first 21 days, but for days 22–100, you have to pay a co-payment. You can close many of the gaps in your Medicare coverage by purchasing a supplemental plan called Medigap. In summary, Medicare is a very good reimbursement system, but it is intended primarily for acute and not chronic care. Medicaid. Medicaid is a state-run program supported by federal, state, and local taxes. It provides medical care coverage for people with limited incomes. If your income is particularly low due to disability or blindness, you may qualify for Medicaid. According to Dr. Dejong, Medicaid was intended to be a backup to Medicare. However, because it is a state-run program, the amount of coverage it provides for various conditions varies from state to state. Medicaid is a very good system in that it offers coverage for both acute and chronic care. Its major advantages include coverage for home attendants and for long-term stay in a nursing home. The down side is that the reimbursement amounts to medical providers are quite low and the bureaucratic paperwork quite high, making the program less attractive to medical providers. Some people may qualify for both Medicare and Medicaid. Preferred Provider Organization (PPO). A Preferred Provider Organization is a group of healthcare professionals and/or hospitals who contract with an employer, an insurance company or another type of third party payer to provide medical care to a

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specified group of potential patients. The services offered are not prepaid or fixed, so you typically have more choice in a PPO than in an HMO. The advantage of this type of organization is that it offers more freedom in seeing physicians outside your plan. The disadvantage is that it can be more costly, because you are then obligated to pay a greater percentage of the fee for services rendered. Point of Service Plan (POS). This plan has been described as a “cross between a fee-for service and an HMO.” You can see doctors outside your plan, but when you do, you have to pay more out of pocket.

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Be an expert on your disability. Educate yourself about all aspects of SCI. You should know how the body works after SCI, especially as it gets older. Be familiar with the anatomy and physiology of the major organ systems. Know the medications that you are taking, including major side effects. Become knowledgeable about the most common problems faced by people living with SCI, such as pressure sores and lung and kidney infections, and about current therapies available to treat them. The more knowledgeable you are, the better consumer of healthcare services you will be. Know your medical history. It is a good idea for you to carry with you a three to four page summary of your medical record at all times—especially if you are meeting with a new medical provider for the first time. This summary should include information on how and when the SCI occurred, surgeries you have undergone, other medical problems, and a list of all your current medications and allergies. Copies of diagnostic tests and consultation reports from key physicians are especially useful.

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Important diagnostic tests include: blood tests, MRIs, urodynamic studies, and cardiac (echocardiogram, stress tests), and lung tests (pulmonary function tests-PFT’s). Recent consultation reports from surgeons, urologists, cardiologists, pulmonologists (doctors specializing in diseases of the lungs), and specialists in SCI are especially valuable. Find a physician who specializes in SCI to care for you. The American Board of Physical Medicine and Rehabilitation (ABPMR) has a subspecialty in SCI. Physicians who have developed an expertise in SCI by virtue of their practice, or by an extra year of training, are eligible to take an examination in this specialty to obtain certification. To locate a physician in your community with SCI certification, contact the ABPMR. If such a physician is not available in your community, the next best option is to identify a family physician who is willing to care for you. Ask other people in your area living with disabilities whom they use. You may need to educate that medical provider about the various aspects of SCI and how they apply to you. You also need to make sure that his office is wheelchair accessible—both inside and outside. Keep a medical diary. In this diary write down the main points of conversations with your medical care providers. Some sample items include changes in medications or instructions on how to take a particular medication. This can be an important reference for you in case you forget their instructions. Plan ahead. In your home, you should have a calendar on which you keep a record of the expiration dates of your current prescriptions and when you need to order more supplies (catheters, gloves, etc.). Always contact your physician for prescription renewals and order your supplies ahead of time. This way you will avoid running out of important items. Know your healthcare plan’s policies for people living with SCI. Don’t be afraid to ask for specific information about your plan’s

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policy on adaptive equipment and durable medical equipment. These are some important questions to ask: ■

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How often are you allowed to get equipment (including replacement equipment)? What kind of equipment does your plan cover? Can you get a “loaner” while your wheelchair is being repaired?

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Do they cover for inpatient and outpatient rehab services? If so, how many days or sessions are covered? What is their policy on receiving treatment from a physician outside the network of providers? Are home health attendant services covered? What is their appeal process if services are denied?

Develop a professional relationship with a “case manager” at your healthcare plan. One of the most frustrating things in dealing with a healthcare plan on the telephone is speaking to different people who are not familiar with your case. In order to minimize this problem, ask to speak to the same person whenever you call, so that person knows you. Explain to her the details of your particular case and your concerns. Consider making telephone appointments to speak to her, and call periodically to ask whether there are any new changes in your health care plan that can affect your care. Be assertive and vocal about your needs. There is an old saying that a squeaky wheel gets the grease! You should be assertive about your needs, but at the same time, always be polite in your interactions with insurance companies and healthcare providers. Keep referrals and letters of denial from your healthcare plan. These letters are important if you are writing a letter of appeal for denial of services. Also keep a record of all your conversations

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with people at your health care plan. This record should include the date of the conversation and the name and title of the person with whom you spoke. Keep in mind that you may have to appeal. In spite of all your efforts, keep in mind that an appeal may be necessary. Therefore, keep good records and know the appeal process. If necessary, seek legal counsel.

References Dejong G, Brannon RW, Batavia AI. “Financing Health and Personal Care” In: Whiteneck Gale G et al eds., Aging with a Spinal Cord Injury. New York: Demos Publications 1993:275–294. Medicare and Medicaid. 1999 edition, Channing L Bete Co. Inc., 1997. 200 State Road, South Deerfield, MA 01373. The Keys to Managed Care: A Guide for People with Physical Disabilities. 1st edition Washington DC, National Rehabilitation Hospital, Center for Health & Disability Research, Paralyzed Veterans of America, and,Eastern Paralyzed Veterans Association Inc. 2000.

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14 Managing a Home Health Attendant

At some point in your life after spinal cord injury you will probably need a home health attendant (HHA) or a personal assistant (PA). The intensity of the services you will need depend on your level of injury, your age, your finances, and the extent of your social support system. An HHA or PA helps you with the activities of your daily life, such as dressing, bathing, bowel/bladder care, cooking, cleaning, shopping, and accompanying you to doctor visits. You may need an HHA for only a few hours a day, or you may need assistance 24 hours a day, every day of the week. The main job of the HHA or PA is to help you to stay as independent in the community as possible for as long as possible. This chapter is divided into five sections that cover how to assess your needs for an HHA, the applicant interview, funding resources for the attendant, effective management strategies to consider when employing an HHA, and maintaining your personal safety when working with an HHA. Much of the information in this article was derived from the publication, Managing Personal Assistants: A Consumer Guide. This is a wonderful resource, and I encourage you to get it and use it as a reference.

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DO YOU NEED A HOME HEALTH ATTENDANT? The most important thing for you to do prior to hiring an HHA is to decide what services you need and how often you need them, based on an honest and realistic assessment of your current lifestyle and what you anticipate your future needs to be. A good rule is to try as much as possible to avoid relying on a spouse or significant other as an attendant, for to do so has the potential to change the dynamics of your relationship from partners to patient and caregiver. Your spouse should be familiar with how to care for you, but should really be turned to only in a time of crisis (an attendant quits and a replacement will not be available for a few days). Even in that scenario, it is better to have a support network, such as fellow members of a local house of worship, to assist in the crisis. What services do you need an HHA to provide? You may have a very independent lifestyle as a paraplegic, but an upcoming surgery for your shoulder will limit your ability to care for yourself for several weeks. The HHA can help you with the chores around the house, dressing, bathing, and bowel routine and can accompany you to doctor visits. Or, perhaps your spouse or significant other has, until recently, been your sole assistance for transfers. However, his recent back and shoulder problems are making it difficult for him to assist you. An HHA can help by assuming the responsibility for transfers and other activities that require bending and lifting. You should also assess when you will need an HHA. Do you need one 24 hours a day/7 days a week, or are there periods during the day or night that are less important? Perhaps you are a high functioning quadriplegic who works during the day, and who just needs someone to help in the morning with dressing and bowel and bladder care. That same person can prepare you a light meal for dinner and lay out your pajamas prior to leaving, so you may just need someone for a few hours in the morning. Once you have identified the needs and determined the number of hours that you will need the HHA, you should write up a job description for that person. The job description should outline tasks (include bowel

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and bladder care if that is part of the job), salary, number of hours needed, policy on guests and food in your house, and the number of vacation and sick days. You should also stipulate how much time in advance to call to let you know if she cannot come in, so that you have enough time to make alternate arrangements.

FINDING AN ATTENDANT Once the job description is complete, the next task is finding an attendant. There are various ways to go about this. For example, you can find an HHA through an agency, or you might place an ad in a local college newspaper for a personal assistant. There are several advantages to having an agency find an attendant for you. You tell them what you need the attendant for, and they will find one appropriate to your needs. This way you do not have to interview anyone. The agency may not only be able to find an assistant more quickly, it may also have a roster of attendants who have more training and experience. The major drawback is financial. You will probably have to pay the agency a finder’s fee. Another way to find a personal assistant is by placing an advertisement in newspapers or on bulletin boards of local shopping centers and libraries. The ads should include some of the information from your job description (services needed, number of working hours, and salary). The more specific you are, the more likely you will get people who are genuinely interested in the position. The advantage is that the process will probably be cheaper than going through an agency (although you should still compare with the fees charged by local agencies). A major disadvantage is the increased work on your part in interviewing and checking references.

INTERVIEWING AND HIRING AN APPLICANT If you have decided to place ads in local newspapers and bulletin boards, you will begin to receive inquiries, usually by telephone. Use that oppor-

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tunity to perform your first screen of the applicants. It helps to have a checklist in front of you during this initial conversation that includes all the things that you are looking for in an attendant. Some sample items on this list might be: ■ ■ ■

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Applicant’s ability to drive Applicant’s ability to perform CPR (cardiopulmonary resuscitation) Applicant’s experience in caring for a person with disabilities (especially SCI) Applicant’s knowledge of, experience with, and willingness to perform, bowel and bladder care Hours applicant is available Two references with phone numbers.

You should use the telephone inquiry to give a detailed job description and be prepared to field questions, such as salary and vacation days. After the initial conversation, check the references provided. Some sample questions include: ■ ■

Was the applicant habitually late? How dependable was the applicant?

You may also want to contact the local police department to inquire whether the applicant has a criminal record. Once you have completed the phone interview, you should arrange to meet the serious applicants at a local diner or restaurant. For security reasons, it is not recommended that you invite them to your home or give your home address. You should consider hiring two attendants if you require coverage over different shifts. That way, if one calls in sick, the other one may be able to provide coverage. Even if you decide to hire just one attendant, you should keep an alternate list just in case the one you hired initially doesn’t work out. Once you make an offer to one or more applicants, you should give the person(s) a two to four-week trial period.

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EFFECTIVE MANAGEMENT STRATEGIES FOR A HOME HEALTH ATTENDANT Having a home health attendant work for you implies an employer/ employee relationship. This means you are the employer and that you have certain responsibilities. First and foremost, you should always pay on time. Your attendant has his own obligations and is counting on you to meet your financial obligation in a timely manner. Therefore, if you agree to pay him on the first of the month, then that is when you should have the money ready. Good record keeping is essential. You should keep a special file with all the payroll records for your attendants. You should evaluate their performance periodically (every six months) and record any disciplinary actions, including a description of any adverse incidents and recommended actions and a time frame to correct the problem. You should also have written expectations for an attendant that you both sign that delineates her responsibilities. Some sample items include arriving on time, accompanying you to doctor appointments, as well as a list of the various chores that need to be done around your house. It is a good idea to have lists of things that need to be done on a daily and weekly basis. For example, assistance with dressing would be done daily, and food shopping would be done weekly. A good attendant can be your link to the medical community when you are not feeling well. The more knowledge that she possesses about SCI, the more help she can be to you when you are not feeling well. Because she is with you for prolonged periods of time, she can give your medical providers key information about signs and symptoms that led to a decline in health. It is essential that you educate your attendant about various aspects of your medical condition. If he has limited knowledge about catheterizations and bowel care, then you, your nurse, or doctor should teach him. Your attendant should be also be knowledgeable about pressure sores and ways to prevent and care for them. If your attendant is not cer-

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tified in CPR, and you feel that this is especially important for you, then you or he should make arrangements at a local medical center to become certified. If you are at risk for autonomic dysreflexia, your attendant should be knowledgeable about the signs, symptoms, and basic preventive and treatment techniques. A good attendant should also know the presenting signs and symptoms of a lung and kidney infection, since they are very common conditions. Last, if you want the attendant to administer your medications, you, your nurse, or your doctor should provide instruction on their intended benefit, dosing schedule, and major side effects. The more your attendant knows about them, the better off you will be. Good communication is very important, especially if your attendant lives with you. Be assertive when it comes to your needs. Use the word “I” a great deal to describe your needs. The Managing Personal Assistants: A Consumer Guide publication discusses the “When…I feel…I want” approach to asserting your needs. Suppose the issue is guests in the house late at night. You could address it in the following manner: “When you bring guests in the house late at night…I feel unsafe…I want the guests to leave by 7:00 PM.” This does not mean that you should become a tyrant. Use authority sparingly, but use it convincingly. In any event, you should set clear boundaries regarding guests for the attendant (times of the day and night that guests are allowed) as well as for the use of your telephone and food. It has been recommended that you include a current attendant in the education of a new attendant about your care. Your current attendant can provide valuable information that even you might not be aware of. Being a good employer also means showing your appreciation for the work of the attendant. Being a good attendant is a difficult job physically and emotionally. If you are happy with your attendant, let him know.

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PAYING FOR THE ATTENDANT Paying for the services of an HHA can be very challenging. Many healthcare plans have limited coverage for these services. You should check with your healthcare plan’s policy regarding personal attendants, but be prepared to pay some money out of pocket. As part of your financial planning for the future, you should anticipate increased need of home health attendants and set some funds aside for it. There is an old saying: “You get what you pay for!” If you want a good quality attendant, you will have to pay well. Call some agencies in your community and ask for the typical range in prices for attendants. If you can afford it, pay in the higher range of the pay scale for your community. Some strategies recommended in Managing Personal Assistants: A Consumer Guide include offering free room and board as part of the financial package. Obviously, you will have to clearly delineate the rules of such an arrangement so that boundaries are kept between you and the attendant. Another strategy involves recruiting an inexperienced person and offering to train him in how to care for a person with SCI. The attendant can use this training as a marketable tool for future employment. Or, if English is not the individual’s primary language, offer to teach it to him.

HOW TO MAXIMIZE YOUR SAFETY WHEN RECEIVING CARE FROM A HOME HEALTH ATTENDANT Living with SCI can put you in a vulnerable position, and depending on a stranger for your care can magnify that vulnerability. Safety becomes even more of a concern in view of the fact that many attendants do not stay in one place for a long period of time. This remaining section will address techniques for minimizing the safety risks.

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Concern for safety should begin with your initial advertisements for a personal assistant. It is recommended that you not put your home address on the flyers or in the advertisements. You should perform a thorough background check of all applicants, including reference checks. Meet potential candidates away from your home. A local diner, restaurant, or shopping mall is appropriate. Refrain from giving your attendant your credit cards or keys to your car. You should also check your telephone bills regularly. You should fire the attendant if there is any evidence of alcohol or drug abuse. If you find yourself in an abusive or potentially abusive situation, you should call 911 or contact your local Adult Protective Services Office immediately.

References Managing Personal Assistants—A Consumer’s Guide, Washington DC. Paralyzed Veterans of America, 2000.

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A A Note for Caregivers

This appendix is primarily geared to the spouse, family member, friend, or other caregiver who has direct care responsibilities for someone living with a spinal cord injury. Living with someone who has a SCI can be very challenging. Beyond the everyday challenges that all couples and families face, there are additional issues that need to be addressed. In the following pages, I offer some suggestions that I hope will be of help.

MAKE TIME FOR YOURSELF If your significant other has SCI that has affected all four limbs, it is very easy to get caught up in the minutiae of his care. If you do not have a home health attendant, you have probably become accustomed to the daily routines associated with living with SCI, such as bowel/bladder care, assisting with dressing, grooming, bathing, hygiene, meal preparations, and doctor/therapist appointments. These schedules take on a life of their own, and it is easy to get so caught up in them that you begin to lose a part of yourself. It is important that you find time to do the things that give you personal fulfillment and offer you an opportunity to take a break from the daily routine. 157

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Consider taking a class at a local school in painting or music or something else that you have always wanted to learn more about. Go to a local museum, movie, or theater every week. This should be your protected time.

OPTIMIZE YOUR PHYSICAL AND EMOTIONAL HEALTH As you get older, your body may show signs of wear and tear. Your joints and back may begin to cause you discomfort. Health problems usually begin to appear as we get older, so you may develop conditions such as heart disease, diabetes, or high blood pressure that require medical attention. All these changes can negatively impact on your ability to care for your significant other with SCI. For example, if you have been assisting him with transfers for several years, you may now be finding that you can no longer do that because of pain in your back or shoulders. It is very important that you look after your own physical and emotional well-being. This means seeing your doctor regularly for checkups and screenings. It means keeping your weight under control, taking any prescribed medications on schedule, exercising, and avoiding smoking, alcohol, and drugs. Find time to walk or exercise on a regular basis several times per week. This could be a great way to relieve stress while doing something good for your body. There may be times when the burdens of your daily routines may be too difficult for you to cope with emotionally. You may feel depressed and isolated. Discuss this with your doctor. She may refer you for psychological or psychiatric help. If she recommends it, take advantage of it.

DEVELOP A NETWORK OF FRIENDS AND FAMILY MEMBERS WHO CAN HELP YOU It is important not to isolate yourself and your significant other from your community. You can’t do everything by yourself, and it’s to your advan-

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tage to have a few close friends or family members who can help you. The help can be very practical, such as food shopping, or providing a backup when a home health attendant cannot come in. It can also come in the form of a sympathetic ear to listen to you when you are feeling down, or a friend who can accompany you to a movie or a local theater. Some good resources for developing such a network include a house of worship or a local SCI support group. If there is no SCI family support group in your community, consider starting your own.

KEEP UP TO DATE ON THE LATEST ADAPTIVE EQUIPMENT There are many different types of adaptive equipment available for people living with SCI. There are devices for the home, workplace, and car. It is a good idea to contact a local rehab facility that specializes in SCI a few times per year to ask about any new technologies available that could be of benefit to you or your significant other. You can do this in person, or by phone, or via the Internet. If your significant other is a veteran, contact the rehab department of a local veterans hospital or a paralyzed veterans organization.

IDENTIFY THE ASPECTS OF YOUR CAREGIVER ROLE THAT GIVE YOU THE MOST DIFFICULTY AND THEN FIND A WAY TO ADDRESS THEM As I mentioned earlier, it is very easy to get caught up in the minutiae of caring for someone living with SCI. You can find yourself involved in bowel/bladder routines, transfers, bathing, dressing, and driving to and from doctor and therapist appointments. Added to this may be the stresses of work, caring for children, or maintaining a home. All of this requires you to be very organized. It is important for you to discuss with your significant other those parts of the daily and weekly routines that are

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giving you the greatest difficulties. Perhaps the morning bowel/bladder/dressing routines are a source of stress, or maybe these routines are causing pain in your back or shoulders. Once you’ve identified the problems, discuss what options you have to correct them. For example, perhaps a home health attendant early in the morning can be of help. Or if a weekly meeting with a friend for dinner or a class at a local college is important to you, then identify a person who can cover for you during those hours away.

KEEP YOUR RELATIONSHIP SEPARATE FROM THE CAREGIVER ROLE AS MUCH AS POSSIBLE If possible, let a home health attendant carry out the bowel/bladder and dressing routines. Focus on the things that you can do as a couple. Watch movies together, entertain friends and family, and take day trips. At the same time, you should be well trained in performing these routines as a backup should the attendant not be available when needed.

ATTEND REHAB SESSIONS WITH YOUR SPOUSE AND KEEP AN OPEN LINE OF COMMUNICATION WITH THE THERAPISTS AND DOCTORS The rehab sessions are an opportunity for you to increase your knowledge and skills about SCI. Don’t be afraid to ask the therapists to show you how to assist your significant other in daily care routines. Practice those techniques with him under the guidance of the therapists.

USE COMMUNICATION TECHNOLOGY TO YOUR ADVANTAGE Living in a remote area makes it difficult to see a doctor regularly. In addition, it may be difficult to speak to your doctor on the phone if she is very busy. Ask your doctor or therapist if you can communicate by e-mail. The

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Internet is also a good source of information and communication with a variety of companies and organizations that are involved with SCI.

BE ORGANIZED It is a good idea to have a notebook or a handheld personal organizer with all sorts of information relating to the care of your significant other. Typical information to store includes the names and addresses of the all the doctors, nurses, home health attendants, and therapists actively involved in his care. It is also important to have a summary of his medical history, which should include date of the SCI, type of SCI, surgeries, hospitalizations to date (including names of facilities and attending surgeons), and test reports (MRI, urodynamic studies, etc.). You can request such a report from the physician. It should be about three to four pages in length. This information is important if your partner needs to be admitted to a hospital where he has not been treated in the past. This note book should also contain information about the different suppliers of catheters, skin products, and other commonly used products. It should also include the names and addresses of those companies and the name of the account representative who usually helps you when you need supplies.

BE VERY FAMILIAR WITH THE INSURANCE PLAN’S POLICIES AS THEY PERTAIN TO SCI Read the fine print, including information about the appeal process and patient’s rights. Establish a relationship with a representative at the insurance company.

References Charlifue SW, Lammertse DP. “Aging in Spinal Cord Injury” In: Kirshblum S et al eds., Spinal Cord Medicine. Philadelphia: Lippincott Williams and Wilkins 2002:409–423. Maynard FM. “Changing Care Needs” In: Whiteneck Gale G et al eds.,Aging with a Spinal Cord Injury. New York: Demos Publications 1993:191–198.

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B Glossary

Acupuncture: Ancient Chinese intervention that uses needles and herbs to treat medical problems. It is based on the concept that there is an internal balance of energy that flows through the body (chi), which is altered in disease states. The goal of acupuncture is to restore that inner balance. Aerobic exercise: A type of exercise in which the goal is to elevate the heart rate to a target level and maintain it there for 20–30 minutes. It is meant to benefit the heart and the cardiovascular system. Atelectasis: A collapsed part of the lung. Atherosclerosis: The process of narrowing of blood vessels due to fatty deposits in their walls. This can reduce the blood flow, which can potentially lead to a stroke or heart attack. Autonomic dysreflexia: A potentially life threatening condition in which the blood pressure is elevated to very high levels. The cause for such a rise in the blood pressure can be a kinked urinary catheter, full bladder, pressure sore, or infection. Bradycardia: Slow heart beat.

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Carpal tunnel syndrome: Pinched nerve at the wrist that can cause numbness and weakness in the hand. It is commonly associated with overuse of the wrists and hands, diabetes, thyroid problems, or wrist fractures. Colonoscopy: Invasive test used to evaluate the colon, commonly used to detect diseases such as colon cancer. Colostomy: An opening on the surface of the skin that is attached to a part of the colon. Stool empties directly through the opening (also known as a stoma), bypassing the rectum and anus. Cystoscopy: Invasive test used to evaluate the bladder. Commonly used to diagnose bladder cancer and bladder stones. Concentric contracture: A type of isotonic exercise in which the muscle shortens as it contracts. Bending the elbow is an example of a concentric contraction of the biceps (muscle in the front of the upper part of the arm). Contracture: A condition in which a joint cannot move through its full range of motion. The joint can become fixed and lead to a loss of function in that limb. CT scan: Radiologic test that uses X-rays to evaluate various parts of the body such as the brain or spine. Can be used in conjunction with an injectable dye to allow better visualization of body parts. Deep vein thrombosis: Term commonly used for blood clot in a limb. Blood clots are potentially dangerous because they can dislodge and block the flow of blood to vital organs. Dermis: One of the layers of the skin. Eccentric contractions: A type of isotonic exercise in which the muscle lengthens as it is exercised. Straightening the elbow while holding a weight in the hand is an example of an eccentric contraction of the biceps (muscle in the front of the upper part of the arm).

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Appendix B Glossary | 165

Electromyography: Test used to evaluate the function of nerves and muscles. Commonly used to diagnose conditions such as carpal tunnel syndrome, radiculopathy, and neuropathy. Endorphin: Type of natural pain killer that is produced by the body. Epidermis: The most superficial layer of skin. Fascia: A fibrous cover overlying muscles under the skin. Heterotopic ossification: An abnormal deposition of bone in soft tissues around joints. The hips, elbows, and knees are commonly affected in SCI. Can lead to loss of motion in a joint. Hypotension: Low blood pressure. Impingement syndrome: An irritation and inflammation of the rotator cuff tendon due to pressure exerted by bones that surround it. This can lead to pain with overhead movements or pushing a manual wheelchair. Isokinetic exercise: A type of exercise in which an exercise machine moves at a constant angular speed as tension is applied against it by exercising muscles. Isometric exercise: A type of muscle strengthening exercise in which the length of the contracting muscle does not change during the contraction. An example of this type of exercise is pushing against a wall. The wall does not move, but the arms are nevertheless performing work. This type of exercise is believed to be less stressful to joints. Isotonic exercise: A type of strengthening exercise in which there is a change in the length of the muscle. The muscle can shorten or lengthen in response to the exercise. Magnetic resonance imaging (MRI): Radiologic test that uses magnets to produce very clear pictures of various body parts. Can be used in conjunction with an injectable dye to allow better visualization of body parts.

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Musculocutaneous flap: Piece of healthy muscle and skin that is surgically removed from one part of the body and implanted into a clean pressure ulcer. Myofascial pain: A type of muscle pain that radiates when pressure is applied to a tender part of the muscle. Associated with trigger points. Neuropathy: Term used to describe various types of nerve injury. Non-steroidal anti-inflammatory drugs (NSAID): Class of medications that are commonly used for the treatment of inflammatory conditions of bones and joints. Orthostasis: Decreased blood pressure noted upon rising from a bed to a seated position or from a seated to a standing position. May cause dizziness and even loss of consciousness. Osteoarthritis: Term used to describe the gradual destruction of cartilage and bones in and around joints. Commonly referred to as “wear and tear” arthritis. Osteomyelitis: Term used for bone infection. Osteoporosis: Term used to describe a condition in which there is a decreased density of bones, which can cause them to weaken and break. The bones of the legs are at particularly high risk of fractures in people living with SCI. Parasympathetic nervous system: Type of nervous system in the body that is responsible for “housekeeping” functions such as digestion and making the heart beat slower. Pneumonia: An infection of the lung. Radiculopathy: Injury to a nerve root as it exits from the spine; commonly known as “pinched nerve” in the lower back or neck. Rotator cuff muscles: Group of muscles around the shoulder joint that are used to rotate the joint in activities such as throwing a ball or pushing

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Appendix B Glossary | 167

a wheelchair. They attach to the bone of the upper arm (humerus) via a rope-like structure known as the rotator cuff tendon. This tendon can become inflamed or torn when pressure is applied to it by surrounding bones (impingement). Sympathetic nervous system: Type of nervous system in the body that is responsible for the “fight or flight” reaction during a stressful or dangerous situation, such as making the heart beat faster. Syrinx: A fluid filled cavity in the spinal cord that can be seen after a spinal cord injury. Can lead to a loss of strength in the arms and legs if it enlarges. Tachycardia: A fast heartbeat. Tendinitis: A tendon is a part of a muscle that attaches to a bone. Tendinitis is a condition in which the tendon is inflamed and injured. Trigger points: Tender points in muscles that radiate pain to other parts of the body when palpated. Often associated with myofascial pain. Urodynamic test: A test that evaluates the function of the bladder and sphincters. It measures the capacity of the bladder to store urine and measures the pressures generated inside the bladder while voiding.

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A

P

P

E

N

D

I

X

C Resources

General Publications Accessible Air Travel: A Guide for People with Disabilities. Jackson Heights, Eastern Paralyzed Veterans Association. Clinical Practice Guideline #15: Treatment of Pressure Ulcers, U.S. Dept. of Health and Human Services AHPCR Publication No. 95-0652 Public Health Service, Agency for Health Care Policy and Research Rockville, Maryland, 1994. Corbet B, Dobbs J, Bonin B. Spinal Network: The Total Wheelchair Resource Book 3rd edition. Santa Monica, CA, Nine Lives Press Inc., 2002. Ducharme SH, Gill KM. Sexuality After Spinal Cord Injury—Answers to Your Questions. Baltimore, Paul H. Brookes Publishing Co., 1997. Finding Your Way Through the HMO Grievance and Appeals Process: An NRH Field Guide for People with Disabilities. National Rehabilitation Hospital, Center for Health & Disability Research, 2002. Wheeling to Fire Safety: Fire Emergency procedures for Individuals with Disabilities. Jackson Heights, Eastern Paralyzed Veterans Association.

Organizations Christopher Reeve Paralysis Resource Center CRPF, 500 Morris Avenue, Springfield, NJ 07081; 1-800-225-0292; 1-973-379-2690; fax: 973-912-9433; www.crpf.org. Paralyzed Veterans of America (PVA) 801 18th Street, NW, Washington, DC 20006; 1-800-424-8200, 1-202-982-1300; fax: 202-416-7641; www.pva.org. United Spinal Association: 75-20 Astoria Blvd., Jackson Heights, NY 11370-1177; 1718-803-0414; e-mail: [email protected], www.epva.org.

169

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Magazines New Mobility, P.O. Box 220, Horsham, PA 19044-0220; 1-888-854-0344, extension 109; www.newmobility.com.

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Index

Note: Boldface numbers indicate illustrations.

abdominal binders, exercise and, 20 abdominal muscles, 25 accessibility, 8, accessibility, 105–106 acetaminophen (Tylenol), 73 acetylcysteine (Mucomyst), 29 acupuncture for pain, 64, 74 adaptive equipment, 134, 159 exercise and, 19–20, 21 aerobic exercise, 17 aging musculoskeletal system and, 59–61 rehabilitation and, 133 respiratory system and, 26–27 Aging with a Spinal Cord Injury, 141 air splints, exercise and, 19–20 albuterol, 30 alcohol use/abuse, 3 Alleve (See naproxen) alveoli of lungs, 26 American Board of Physical Medicine and Rehabilitation (ABPMR), 146 anemia, 88 antibiotics, 30 appealing decisions of insurance, 148 armrests, wheelchairs and, 113–114 arthritis, 62 shoulder joint and, 62 spine and neck, 71–72

atelectasis (collapsed lung), 28 atherosclerosis, 11 atrium of heart, 9 attendants (See home health attendants) autonomic dysreflexia (AD), 15, 154 baclofen, 81–82 bladder (See urinary system) BladderScan, 55 blood pressure, 11, 13 blood urea nitrogen (BUN) levels, 54 body image, emotional well–being and, 105 body straps, exercise and, 20 bones (See musculoskeletal system) botulinum toxin (Botox), 83 bowel management (See also gastrointestinal system), 41, 43–47 enemas and, 44, 46 laxatives and, 44–45 medications used in, 43–44 respiratory system and, 33 stool softeners and, 44–45 brakes/wheel locks, wheelchairs and, 115 breathing (See respiratory system) bronchoscopy, 35 171

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burnout, 7 bursitis, 62 capillaries of lungs, 26 car toppers for wheelchairs, 119 cardiovascular system, 1–2, 9–22, 10 atherosclerosis and, 11 blood pressure and, 11 cholesterol levels, 11, 12 diabetes and, 12 diet and, 12 effects of SCI on, 9–11 exercise and, 11–15 heart disease and, 11 heart in, 9–11, 10 physical exam and, 20 smoking and, 20 sympathetic and parasympathetic nervous system and, 10 weight and, 20 caregivers, 7, 157–161 adaptive equipment and, 159 communication technology for, 160–161 difficult aspects of care, addressing, 159–160 free time for, 157–158 friends and family, networking with, 158–159 health of, 158 insurance issues and, 161 organizing skills for, 161 rehabilitation and, 134, 160 spouse as, relationships and, 160 carpal tunnel syndrome, 68–70 cars and driving (See also vans and minivans), 128–129 case managers, 6–7, 147 casters, wheelchairs and, 115 Catapress (See clonidine) catheterization, 51, 52–53, 55–57 celecoxib (Celebrex), 63 challenges to health and SCI, 141–142

cholesterol levels, 11, 12 Clinical Practice Guideline/Treatment of Pressure Ulcers, 89 clonidine (Catapress), 83 codeine, 73 Colace, 44 collapsed lung (atelectasis), 28 colon cancer and colonscopy, 42, 46 communication technology, 160–161 computed tomography (CT), 72–73 concentric contractions, 16, 17 constipation, 43, 46 contractures, 124 contrast material, 72 coping skills, 102–107 coronary arteries of heart, 10 cortisone injections, 64 hands and wrists and, 70 shoulder joint and, 64 coughing, 25, 26, 34 cromolyn, 29 cytoscopy, 54 dantrolene (Dantrium), 83 deep vein thrombosis (DVT), 89 defecation, 39–40 Dejong, Gerben, 141 deltoid muscles, 19 dental care, 95–97 dentures, 96–97 dependency, emotional well–being and, 100–101 depression, 99–100 diabetes, 88 cardiovascular system and, 12 diaphragm and hemidiaphragms, 24–25, 27 diazepam (Valium), 82 diet (See also weight control), 3–4 cardiovascular system and, 12 skin and, 87 discs of spine, 71 divorce, 101–102 doctors, 5

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Index | 173

driving concerns for people with paraplegia, 125 driving concerns for people with quadriplegia, 124–125 drug addiction, 101 Dulcolax, 44 eating (See diet) eccentric contractions, 16, 17 education and training, 7, 138 elbow braces, 19–20, 19 electromyograms, 69–70 emotional well–being, 2, 99–107 accessibility and, 105–106 body image and, 105 coping skills and, 102–107 dependency and, 100–101 depression and, 99–100 divorce and, 101–102 drug addiction and, 101 friends and family and, 102–104 goal setting and, 105 health care and, 106 hobbies and, 105 medications and side effects on, 106–107 post traumatic stress disorder (PTSD) and, 100 professional help with, 107 sleep problems and, 106 social support system and, 104 stress management and, 102 volunteering, 106 endorphins, 64 enemas, 44, 46 equipment, 6 excitatory vs. inhibitory nervous impulses, spasticity and, 78–79 exercise, 4–5 adaptive equipment for, 19–21 aerobic, 17 autonomic dysreflexia (AD) and, 15 blood pressure vs., 13

cardiovascular system and, 11–12, 13–15 concentric vs. eccentric contractions in, 16, 17 flexibility program in, 16 fractures and, 15 heart rate and, 14 heterotopic ossification vs., 13 isometric, isotonic, isokinetic, 16–17, 17, 18 muscle groups in, 19 Neuromuscular Electrical Stimulation (NMES) in, 14–15 overdoing, 21 physical exam and, 20 pressure sores vs., 13 programs for, 16–17 range of motion, 13 recliner wheelchairs and, 20 respiratory system and, 35 shoulder joint and, 64, 65, 66, 67, 68 specificity of training in, 18 spine and neck, 74 strengthening program in, 16, 18–19 technique for, 21 temperature change and, 13–14, 21 family doctor selection, 5 femur, 75 Fichtenbaum, Joyce, 99 financial management, 137–140 Fleet, 44 flexibility program, 16 fractures, 74–75 exercise and, 15 frame, wheelchairs and, 114 friends and family, 7, 102–104, 158–159 gabapentin (Neurontin), 73, 83 gallstones, 42–43 gastritis, 42 gastrointestinal system, 2, 37–47, 38

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anatomy and physiology of, 37–40 bowel management and, 41, 43–47 cancer of the colon and colonscopy in, 42, 46 constipation and, 43, 46 defecation and, 39–40 effects of SCI on, 40–43 enemas and, 44, 46 gallstones and, 42–43 hemorrhoids and, 42 laxatives and, 44–45 medications used in, 43–44 nervous system for, 40 small and large intestines in, 39 stomach in, 37, 39 stool softeners and, 44–45 superior mesenteric artery syndrome and, 43 sympathetic and parasympathetic nervous systems and, 40 ulcers and gastritis in, 42 glossopharyngeal breathing, 34 glycerin suppositories, 44 goal setting, emotional well–being and, 105 hands and wrists carpal tunnel syndrome and, 68–70 ligaments and, 69 nerve conduction studies and electromyograms in, 69–70 wheelchair use and, 69 HDL cholesterol, 11, 12 health care insurance, 139–140, 141–148 appealing decisions of, 148 caregivers and, 161 case managers and, 147 challenges to health and SCI, 141–142 dealing with healthcare providers, 145–148 managed care and HMOs in, 143 Medicaid and, 144

medical diaries and, 146 medical records and, 145–146 Medicare in, 143–144 point of service (POS) plans in, 145 policy details in, 146–147 preferred provider organization (PPO) and, 144–145 referrals and letters of denial from, 147–148 specialist, specialized care, 146 heart disease, 11 heart, 9–11, 10 hemorrhoids, 42 heterotopic ossification (HO), 75–76 exercise and vs., 13 hobbies, 105 Hollister–Advance Plus Intermittent catheter, 57 home health attendants (HHA), 139, 149–156 finding, 151 interviewing and hiring, 151–152 management strategies for, 153–154 need for, determining, 150–151 paying for, 155 safety and, 154, 155–156 home modifications for accessibility, 8 home office, working from home, 138 humerus, 19, 61 hypotension, 11 ibuprofen (Motrin), 63 impingement syndrome, 62 incontinence, urinary, 50–51 indwelling catheters, 51, 52, 55 infections, respiratory system and, 33 influenza, flu shots, 33 infraspinatus, 19 insurance (See health care insurance) intercostal muscles, 25 intermittent positive pressure breathing machine (IPPB), 28 intestines (See also gastrointestinal system), 39

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Index | 175

intrapulmonary percussive ventilators, 35 isometric, isotonic, isokinetic exercises, 16–17, 17, 18 joints (See musculoskeletal system) Keys to Managed Care, The, 142 kidneys (See urinary system) Kirshblum, Steven, 99 knees, 60 kyphosis, 61 Landsman, Ziggy, 121 lattisimus dorsi, 19 laxatives, 44 LDL cholesterol, 11, 12 leg straps, exercise and, 20 leg/foot rests, wheelchairs and, 114 letters of denial, insurance and, 147–148 lidocaine, 74 lungs (See respiratory system) magnesium citrate, 45 magnetic resonance imaging (MRI), 72–73 managed care and HMOs, 143 Managing Personal Assistants, 149, 154, 155 mechanical ventilation, respiratory failure, 30–32, 34–35 Medicaid, 144 medical diaries, 146 medical records, 6, 145–146 Medicare, 143–144 Metamucil, 44 methadone, 73 Milk of Magnesia, 44–45 mitral valve of heart, 9 morphine, 73 Motrin (See ibuprofen) mucolytics, 29 Mucomyst (See acetylcysteine)

muscle groups (See also musculoskeletal system), 19 musculoskeletal system, 2, 59–84 aging and, 59–61 effects of SCI on, 60–61 fractures and, 74–75 heterotopic ossification (HO) and, 75–76 joint stiffening and kyphosis in, 61 neck pain and 71–72, 73–74 osteoporosis and, 61, 74 posture and, 61 shoulder joint in, 61–68 spasticity and, 78–84 spine in, 71–73 tendon/muscle transfers in, 76–78 wheelchair use and, 60 wrist and hands in, 68–71 myofascial pain and trigger points, 72, 73–74 naproxen (Alleve), 63 narcotics, 73 neck pain, 71–72, 73–74 nerve blocks, 74 nerve conduction studies, 69–70 Neurogenic Bowel, 37, 46 Neuromuscular Electrical Stimulation (NMES), 14–15 Neurontin (See gabapentin) nonsteroidal anti–inflammatory drugs (NSAIDs), 63, 73 O’Connor, Kevin, 89 organizing skills for caregivers, 161 orthostatic hypotension, 11 osteoarthritis, 71–72 osteoporosis, 61, 74 Paralyzed Veterans of America (PVA), 37 parasympathetic nervous system, 10 cardiovascular system and, 10 gastrointestinal system and, 40

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part time work, 139 pectoral muscles, 25 pectoralis major, 19 Percocet, 73 phenol, 83–84 physical exam, 20 physical therapy, 64, 125 pinched nerves, 71, 73 pneumonia, 28 point of service (POS) plans, 145 post traumatic stress disorder (PTSD), 100 posture, 29 musculoskeletal system and, 61 respiratory system and, 29, 33 preferred provider organization (PPO), 144–145 pressure ulcers, 4, 88–95 exercise vs., 13 grading of, 91 high risk areas for, anatomy of skin, 89–90, 90 predisposing factors to, 91–92 preventing, 92–94 smoking and, 93 treatment of, 94–95 weight shifts and pressure release for, 87–88, 92–93 wheelchairs, seating and, 93 wheelchairs and, 120 Pressure Ulcers and Spinal Cord Injury, 89 prostate gland, 51–52 range of motion exercises, 4–5, 13 recliner wheelchairs, 20, 116 record keeping, 6, 145–146 referrals, 147–148 refresher courses, rehabilitation and, 132–133 Reglan, 44 rehabilitation, 131–135 adaptive equipment and, 134 aging and, 133

caregivers and, 134, 160 concerns with, 134 learning new skills in, 133 refresher courses in, 132–133 relationships (See also friends and family), 7 resources, 169–170 respiratory system, 2, 23–36, 24 aging and, 26–27 atelectasis (collapsed lung) and, 28 bowel management and, 33 breathing in, 33–34 breathing, inhalation and exhalation and, 23–26 bronchoscopy and, 35 coughing and, 25, 26, 34 diaphragm and hemidiaphragms in, 24–25, 27 effects of SCI on, 27–29 exercise and, 35 glossopharyngeal breathing in, 34 infections and flu and, 33 intermittent positive pressure breathing machine (IPPB) and, 28 intrapulmonary percussive ventilators and, 35 lungs in, 25–26 mechanical ventilation, 34–35 mechanical ventilation, respiratory failure, and, 30–32 medications to treat, 29–30 muscles used in breathing and, 25, 27 pneumonia and, 28 pollution and, 32 posture and, 29, 33 secretion management, 34 sleep and, problems during, 32 smoking and, 29, 32 spasticity and, 28–29, 33 tracheostomy and, 31 weight control and, 32–33 retirement, 139 rhomboids, 19 rofecoxib (Vioxx), 63

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Index | 177

rotator cuff muscles/tendons and tendonitis, 19, 62 Salcido, Richard, 89 salmeterol, 30 scalene muscles, 25 scapula, 61 seating systems, wheelchairs and, 112–113 secretion management, 34 senna (Senekot), 44 shearing forces and skin, 86 shoulder joint, 5, 61–68 acupuncture for pain in, 64 arthritis and, 62 bursitis in, 62 cortisone injections in, 64 impingement syndrome in, 62 injuries to, and treatment of, 63–68 pain medications for injuries to, 63 physical therapy and exercise for, 64, 65, 66, 67, 68 rotator cuff muscles/tendons and tendonitis in, 62 surgeries for, 65 wheelchair use and, 62–63 side effects of medication, emotional well–being and, 106–107 skin (See also pressure ulcers), 2, 4, 85–88 anatomy of, 89–90, 90 care of, 85–88 diabetes, anemia, and, 88 diet and, 87 inspection points for, 85, 86 pressure ulcers and (See pressure ulcers) shearing forces against, 86 smoking and, 88, 93 temperature change and, 88 weight control and, 86–87 weight shifts and pressure release for, 87–88, 92–93 wheelchairs and seating and, 87

sleep problems, 32, 106 smoking, 3, 20 pressure ulcers and, 88, 93 respiratory system and, 29, 32 social support system, 104 spasticity, 78–84, 124 causes of, 80–81 disadvantages and advantages of, 80 excitatory vs. inhibitory nervous impulses and, 78–79 medications to treat, 81–84 respiratory system and, 28–29, 33 signs and symptoms of, 79 treatment of, 80–81 urinary system and bladder management, 55 specialist, specialized care, 146 specificity of training, 18 sphincterotomy, 57 spinal cord, 71 Spinal Network, 63 spine, 71–73 myofascial pain and trigger points in, 72, 73–74 neck pain and, 71–72, 73–74 nerve blocks and, 74 osteoarthritis in, 71–72 physical therapy and exercise in, 74 pinched nerve in, 71, 73 vertebrae, discs, spinal cord in, 71 X rays, MRI, and CT scans of, 72–73 spouses (See also caregivers), 7, 160 sternocleidomastoid muscles, 25 steroid medications, 30 stomach (See gastrointestinal system) stool softeners, 44–45 strapped weights, exercise and, 20 strengthening program, 16, 18–19 stress management, 102 superior mesenteric artery syndrome, 43 suprapubic catheters, 56 supraspinatus, 19

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sympathetic nervous system, 10 cardiovascular system and, 10 gastrointestinal system and, 40

urinary tract infections (UTIs), 53, 57 urodynamic evaluation of urinary function, 54

teeth (See dental care) temperature change, 88 exercise and, 13–14, 21 tendon/muscle transfers, 76–78 teres minor, 19 theophylline, 29–30 Theravac, 44 Tilt–in–Space wheelchairs, 116 tizanidine (Zanaflex), 83 tracheostomy, 31 Tramadol, 73 trapezius muscles, 19, 25 tricuspid valve of heart, 9 trigger points, 72, 73–74 Tylenol (See acetaminophen)

Valium (See diazepam) valves of heart, 9 vans and minivans, 123–129 cars and, 128–129 cost of, 127–128 driving concerns for people with paraplegia, 125 driving concerns for people with quadriplegia and, 124–125 modifications to, 123–124, 126–127 physical therapy and driving, 125 wheelchairs and, 120–121 ventricle of heart, 9 vertebrae, 60, 71 Vioxx (See rofecoxib) volunteering, 106

ulcers, stomach, 42 ultrasound, 54 ureters, urethra (See urinary system) urinary system, 2, 4, 49–58, 50 aging and, 51–52 bladder and urethras in, 49 bladder management and, 4, 55–57 blood urea nitrogen (BUN) levels and, 54 catheterization and, 51, 52–53, 55–57 cytoscopy and ultrasound in, 54 effects of SCI on, 52–53 flow of urine in, 49–50 incontinence and, 50–51 infections (UTI) and, 53, 57 kidneys and ureters in, 49 medications used in, 51 nerve impulses in, 50 prostate gland and, 51–52 spasticity and, 55 sphincterotomy and, 57 tests on kidney and bladder function in, 53–54 urodynamic evaluation of, 54

water intake, 4 weight control, 20 respiratory system and, 32–33 skin and, 86–87 weight shifts and pressure release for skin, 87–88, 92–93 weights, exercise and, 20 wheelchairs, 6, 8, 109–121 armrests in, 113–114 brakes/wheel locks in, 115 casters in, 115 changing needs and, 120–121 components of, 110–112 frame of, 114 hands and wrists and, 69 leg/foot rests in, 114 manual, 110–115 musculoskeletal system and, 60 power type, 116–119 pressure ulcers and, 93, 120 seated position in, ideal, 116 seating systems for, 112–113, 120 shoulder joint and, 62–63

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Index | 179

skin care and, 87 special type, 116 traveling with, 120–121 wheels, tires, hand rims in, 114–115 Wheelchairs/Adaptive Mobility Equipment and Seating, 109 wheels, tires, hand rims, wheelchairs and, 114–115

wrist and hands (See hands and wrists) wrist cuffs, exercise and, 20 X rays, 72–73 Zanaflex (See tizanidine), 83

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Living with Spinal Cord Injury

Deep: Real Life with Spinal Cord Injury

ABC of Spinal Cord Injury

Spinal Cord Medicine Respiratory Management Following Spinal Cord Injury: Clinical Practice Guidline for Health-Care Professionals

Living With Brain Injury

Still Lives: Narratives of Spinal Cord Injury (Bradford Books)

The Spinal Cord (Gray Matter)

Women living with self-injury

The Spinal Cord (Gray Matter)

Spinal Imaging Diagnostic Imaging of the Spine and Spinal Cord

Spinal Cord Injury: A Guide for Patients and Families (American Academy of Neurology)

Alternative Medicine and Spinal Cord Injury - Beyond the Banks of the Mainstream

The Official Patient's Sourcebook on Spinal Cord Injury: A Revised and Updated Directory for the Internet Age

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Living With the Dead

Living with the Dead

Living with Leanne

Living with the Dead

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Living With Stress

Living with Radiation

Living with Fibromyalgia

Living With The Dead

Living with the Dead

Living with Spinal Cord Injury

Deep: Real Life with Spinal Cord Injury

ABC of Spinal Cord Injury

Spinal Cord Medicine Respiratory Management Following Spinal Cord Injury: Clinical Practice Guidline for Health-Care Professionals

Living With Brain Injury

Still Lives: Narratives of Spinal Cord Injury (Bradford Books)

The Spinal Cord (Gray Matter)

Women living with self-injury

The Spinal Cord (Gray Matter)

Spinal Imaging Diagnostic Imaging of the Spine and Spinal Cord

Spinal Cord Injury: A Guide for Patients and Families (American Academy of Neurology)

Alternative Medicine and Spinal Cord Injury - Beyond the Banks of the Mainstream

The Official Patient's Sourcebook on Spinal Cord Injury: A Revised and Updated Directory for the Internet Age

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Living with Leanne

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