Post-Polio Syndrome

Post-Polio Syndrome: A Guide for Polio Survivors and Their Families

JULIE K. SILVER
FOREWORD BY LAURO S. HALSTEAD
Copyright Date: 2001
Published by: Yale University Press
Pages: 304
https://www.jstor.org/stable/j.ctt1nq7pz
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  • Book Info
    Post-Polio Syndrome
    Book Description:

    The effects of polio that occur decades after the disease has run its course-weakness, fatigue, pain, intolerance to cold, difficulty with breathing and swallowing-are often more devastating than the original disease. This book on the diagnosis and management of polio-related health problems is an essential resource for polio survivors and their families and health care providers.Dr. Julie K. Silver, who has both personal and professional experience with post-polio syndrome, begins the book by defining and describing PPS and providing a historical overview of its diagnosis and treatment. Chapters that follow discuss finding good medical care, dealing with symptoms, maintaining proper nutrition and weight, preventing osteoporosis and falls, and sustaining mobility. Dr. Silver reviews the latest in braces, shoes, assistive devices, and wheelchairs and scooters. She also explores issues involving managing pain, surgery, complementary and alternative medicine, safe and comfortable living environments, insurance and disability, and sex and intimacy.

    eISBN: 978-0-300-12858-1
    Subjects: Health Sciences, Public Health

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Foreword
    (pp. ix-xii)
    Lauro S. Halstead

    Polio—like smallpox—is one of those ancient diseases that is destined to have a modern ending. According to the World Health Organization, acute paralytic poliomyelitis, after a run of many millennia, will be eliminated from the world not only in our lifetime but most likely in the next few years. In this country, the history of polio is much shorter. The main events were packed into a span of only thirty-nine years—barely two generations—beginning with the first major epidemic in 1916 (which was centered in New York City) and ending with the announcement on April 12, 1955,...

  4. Preface
    (pp. xiii-xviii)
  5. CHAPTER 1 Polio—A Look Back
    (pp. 1-11)

    There has never been a disease quite like polio. Unique in ways that defy explanation, it has created a legacy of shattered lives that continues to this day.

    Poliomyelitis is an ancient disease, with references dating back to the Old Testament. In 1500 B.C., an Egyptian stone carving showed a priest leaning on a staff—one leg smaller and shorter than the other, his foot pointed in the manner characteristic of polio. In the 1700s, a British physician named Michael Underwood formally described polio after numerous outbreaks. Although Dr. Underwood did not officially name the disease, he described it as...

  6. CHAPTER 2 Post-Polio Syndrome
    (pp. 12-20)

    With the advent of the polio vaccines, the country’s obsession with the disease ended. The vaccines were effective not only in eliminating polio but also in erasing its prominence on political and healthcare agendas. In an amazingly short time, polio was obliterated as completely as if it had never existed. Polio survivors moved on with their lives, the March of Dimes went on to fight birth defects, and politicians promoted other causes. Even medical doctors, if they studied it at all, learned about polio as a historical footnote. Polio was so thoroughly expunged from our national consciousness that it did...

  7. CHAPTER 3 Nonparalytic Polio and Post-Polio Syndrome
    (pp. 21-26)

    Throughout history polio has been described in various ways but generally asparalyticornonparalytic.¹ Today we are beginning to recognize that there is a spectrum of paralysis, and that individuals who were formerly thought to have hadnonparalyticpolio may have indeed had some mild paralysis. Moreover, recent evidence has suggested that some individuals who were not known to have had polio at all actually did suffer the disease at some point and years later are experiencing symptoms consistent with Post-Polio Syndrome. These cases are anecdotal and in no way reflect the experiences of the majority of polio survivors....

  8. CHAPTER 4 Finding Expert Medical Care
    (pp. 27-37)

    Although nearly every health-care provider in the United States has been involved in one way or another in the care of individuals who have had polio, polio survivors justifiably lament that too often the people who provide this care do not understand their unique medical issues, and in particular do not understand Post-Polio Syndrome. In defense of health-care providers, quite simply, many of them have not had the opportunity to learn about PPS. More often than not, this topic was excluded from their formal didactic training. The key reason is that PPS was not a subject of intense study for...

  9. CHAPTER 5 The EMG Controversy
    (pp. 38-43)

    Polio survivors who are seeking medical treatment are often faced with the dilemma of whether or not to have an electromyographic study (EMG). The decision to proceed or decline should be carefully considered and based on accurate information regarding what the study entails and what information is garnered from it.

    An EMG is aphysiologicaltest that studies how the muscles are working. The fact that it actually tests what is occurring at the level of the muscles—as opposed toimagingtests (essentially high-tech photographs) such as magnetic resonance imaging studies (MRIs), bone scans, computed tomography scans (CTs), and...

  10. CHAPTER 6 Prevailing over Pain
    (pp. 44-52)

    There is an oft-told saying that the only things one can count on in life are death and taxes. Pain should be added to this list, for everyone suffers pain. In fact, a recurrent theme from birth to death is pain and the suffering that accompanies it. Clearly for some individuals pain’s grip is more enduring, more severe, more disabling than for others. Most polio survivors are intimately familiar with pain from the time of onset of the acute illness, if not before.

    Pain mixed with feelings of helplessness and uncertainty about the future is well documented by survivors who...

  11. CHAPTER 7 Preserving and Protecting Your Arms
    (pp. 53-61)

    Every polio survivor whom I have had the pleasure of treating has heard me say at least once, “Your arms are your key to independence.” Think about it. If you cannot use your legs at all, you can still remain totally independent—living alone, bathing yourself, feeding yourself, driving a car. But if you cannot use yourarmsat all, you immediately cease to be independent and must rely on others to help you with even the most routine (and intimate) activities of daily living. For polio survivors who are completely self-sufficient, the thought of relinquishing even a small amount...

  12. CHAPTER 8 Sustaining Strength
    (pp. 62-67)

    Probably the greatest fear of polio survivors is that they will become weaker with time. After the enormous effort made to regain strength following the initial polio bout, the thought of once again becoming weak seems incomprehensible. Nevertheless, many polio survivors are facing what they fear most—increased weakness. Regrettably, in many individuals this new weakness is directly linked to further disability. Although new weakness is one of the cardinal signs of Post-Polio Syndrome, many factors may contribute to a loss of strength in polio survivors.

    Studies have shown that everyone loses some strength as they age.¹ However, polio survivors...

  13. CHAPTER 9 Fighting Fatigue
    (pp. 68-79)

    Fatigue is the most commonly reported symptom in polio survivors, with more than 90 percent of individuals reporting new or increased fatigue and more than 40 percent disclosing fatigue that interferes with their ability to perform daily activities and work.¹ But polio survivors are not alone in their weariness.

    Fatigue is a common complaint to physicians in general practice. In fact, multiple studies have reported that 20 to 40 percent of the general population routinely report feeling fatigued.² One can hardly pick up a popular magazine without seeing an article on how to fight fatigue. Yet medical science has learned...

  14. CHAPTER 10 Controlling Cold Intolerance
    (pp. 80-82)

    Although many people complain of sensitivity to or intolerance of cold, polio survivors are more apt to suffer because of injury to nerves that help control the temperature of the body—in particular, the extremities. Atrophied muscles also contribute to the difficulty polio survivors experience when trying to keep their limbs warm, since muscles that do not contract well are unable to assist blood vessels in bringing blood to the extremities. Despite the fact that many polio survivors report that they are sensitive to cold weather and have difficulty keeping their arms and legs warm even under mild weather conditions,...

  15. CHAPTER 11 Respiratory Problems
    (pp. 83-90)

    Respiratory problems in polio survivors could be classified as the great masqueraders, for the symptoms may seem like anything but difficulty in breathing. Before you skip over this chapter because you breathe well and assume you have no respiratory problems, bear in mind that respiratory conditions may be subtle, may not have to do with breathing when you are awake, and may have nothing to do with whether you had respiratory problems during the initial polio episode. I admit to having neglected respiratory issues in polio survivors in the past. Over the years, however, I have gained new respect for...

  16. CHAPTER 12 Swallowing Issues
    (pp. 91-102)

    My grandfather was a polio survivor who had profound difficulty with swallowing that progressed as he aged. Although not all polio survivors who develop swallowing problems have had bulbar polio (which affects the muscles that control swallowing and breathing), my grandfather did have this type. He was typical of many bulbar polio survivors in that his recovery from the initial polio left little evidence that he had ever had any problems with breathing or swallowing. Yet his later years were punctuated with coughing, throat clearing, and downright choking during every meal.

    I distinctly recall that one of my grandfather’s greatest...

  17. CHAPTER 13 Exercise Essentials
    (pp. 103-121)

    Many individuals who contracted polio during the epidemics have spent a lifetime guided by the words “Use it or lose it”—a philosophy instilled in them during their initial illness by physical therapists and physicians who believed exercise to be critical in recovering from acute paralytic polio. However, people who had polio decades ago are now hearing the exact opposite: “Use it and youwilllose it.” Even published studies have not provided consistent guidelines. The topic of exercise has become one of the most confusing issues for polio survivors as they age. Research during the 1990s indicated that exercise...

  18. CHAPTER 14 Energy Conservation and Pacing
    (pp. 122-139)

    “My muscle power and endurance are as coins in my purse: I have only so many and they will buy only so much. I must live within my means, and to do this I have to economize: what do I want to buy and how can I buy it for the least possible cost?” These are the words of Hugh Gallagher, an award-winning writer and a polio quadriplegic who has remained self-sufficient for more than forty years. Describing how he manages his energy as he ages, Gallagher goes on to say: “Growing old with polio is a matter of economics:...

  19. CHAPTER 15 Nutrition and Weight
    (pp. 140-143)

    Attempting to write a chapter that addresses nutrition and weight issues while providing surefire ways to stay trim and fit is a recipe for failure. No chapter (or even book) can reveal the “secrets” of proper nutrition and ideal weight management, in part because dietary recommendations change frequently as medical science learns more about how food affects health and disease. Even more important is that individuals often require advice that is more specific than generic, in order to take into account their health history, dietary preferences, exercise restrictions, weight fluctuations, and target weight.

    Nevertheless, the subjects of diet, nutrition, and...

  20. CHAPTER 16 Preventing Falls and Further Disability
    (pp. 144-158)

    Falling is perhaps the single most disabling event that can occur in an individual with a history of paralytic polio. The statistics in the general population on falls and subsequent disability are staggering. Accidents are the sixth leading cause of death in persons over sixty-five years of age, and falls account for two-thirds of these deaths.¹ Approximately 30 percent of persons over the age of sixty-five and more than 50 percent of those over age eighty who are living independently will experience at least one fall each year.² The annual number of hip fractures in the United States is 250,000....

  21. CHAPTER 17 Keeping Bones Healthy and Strong
    (pp. 159-169)

    Strong, healthy bones are essential to aging gracefully with polio and preserving the ability to function at the highest possible level. Unfortunately, when it comes to bones, paralytic polio survivors already have two strikes against them. The first is that bones surrounded by paralyzed muscles are generally not as thick and strong as bones surrounded by normally functioning muscles. A key element in maintaining the bones is the ability of strong muscles to contract and then relax (a perpetual tug and release process). The second strike is that polio survivors are not always able to perform the aggressive weight-bearing exercises...

  22. CHAPTER 18 Mobility
    (pp. 170-176)

    Mobility is one of the most meaningful topics for polio survivors to consider. Thus, the following three chapters are devoted to the subject. Three themes recur continually. The first issafety.Mobility should be safe, so that one does not risk falling and having a serious injury that may ultimately cause further disability. The second theme isindependence.The goal should always be to encourage as much independence as possible—and mobility is a large part of independence. The third theme isefficiency—specifically, efficiency in the way one moves about. This is particularly important in polio survivors, who need...

  23. CHAPTER 19 Bracing, Shoes, and Assistive Devices
    (pp. 177-185)

    To many polio survivors the thought of using additional equipment (such as braces, wheelchairs, canes, or crutches), regardless of what they currently use, is unwelcome. Perhaps they view these devices as limiting their ability to do what they need to do rather than helping to make them more mobile and independent. Or some people may view the use of any type of equipment as an indication that they are disabled. They may be concerned about how others (particularly employers) will perceive such equipment. This perfectly rational concern sometimes results in vehement refusal to consider new or different bracing options, despite...

  24. CHAPTER 20 Wheelchairs and Scooters
    (pp. 186-197)

    Many polio survivors have used a wheelchair or a motorized scooter since the time of their initial polio. Others are finding that due to weakness and decreased endurance from Post-Polio Syndrome they need help for long-distance mobility (particularly out in the community). Although few people who have never utilized a wheelchair or scooter relish the idea of using one, these appliances can significantly improve their quality of life and open a whole new world to individuals whose environment is becoming limited because of mobility issues. Countless polio survivors have told me that they no longer go to places they enjoy...

  25. CHAPTER 21 Surgical Considerations
    (pp. 198-208)

    Surgery can be an ominous and intimidating prospect for someone who has had polio. Childhood memories of surgical procedures that were painful and frightening may still haunt polio survivors who are now adults. On the other hand, many polio survivors experienced great success with surgery after the acute polio. For instance, a successful muscle transplant that allowed someone to walk without braces may be fondly recalled. Surgery may be a welcome thought to many polio survivors as they envision vast improvements in their current health status. Regardless of whether one contemplates surgery with enthusiasm or trepidation, being aware of the...

  26. CHAPTER 22 Complementary and Alternative Medicine
    (pp. 209-215)

    Complementary and alternative medicine (CAM) includes a wide variety of treatments such as acupuncture, massage, and herbal medicines that may or may not be useful to polio survivors. The Office of Alternative Medicine at the National Institutes of Health defines CAM as “a broad domain of healing resources that encompasses all health systems, modalities and practices and their accompanying theories and beliefs, other than those intrinsic to the politically dominant health system of a particular society or culture in a given historical period.”¹

    Though many CAM treatments do not have proven value, the use of such therapies is increasing by...

  27. CHAPTER 23 Designing a Safe and Comfortable Living Environment
    (pp. 216-227)

    An environment that is comfortable, safe, and convenient is important to everyone. The environment of polio survivors should allow them also to conserve energy and to be as independent as possible. Creating an environment where polio survivors can thrive takes careful thought, and consideration of each individual’s specific needs.

    Before becoming discouraged about the potential cost to improve your environment, remember that it will cost you nothing now to continue reading. This chapter will propose ways in which you can economically change your environment and resources where you may be able to find financial support. Consider the following questions: Are...

  28. CHAPTER 24 Insurance and Disability Benefits
    (pp. 228-236)

    During the polio epidemics in the first half of the twentieth century, health insurance was uncommon. Many individuals who became ill with polio relied on small “polio policies” (insurance policies that specifically covered the care of an individual who contracted polio) or financial support from the National Foundation for Infantile Paralysis. Others simply did not seek treatment or paid for it themselves. Today, decades later, health insurance is something that most of us rely on to cover the majority of our medical bills. Debating how medical resources should be allocated and who should pay for these resources is the topic...

  29. CHAPTER 25 Sex and Intimacy
    (pp. 237-248)

    I am rarely surprised by the things people tell me during an office visit; however, not long ago I had the privilege of treating a polio survivor who had a number of serious medical issues. His list of problems was so long and overwhelming that I did what I often do in order to have a place to start. I asked him, “What is the one thing I can do to help you the most?” I expected him to reply that he wanted me to help him keep walking, or that his pain was intolerable and he needed relief, or...

  30. CHAPTER 26 Coping with Polio and Post-Polio Syndrome
    (pp. 249-260)

    In his moving book,When Bad Things Happen to Good People, Rabbi Harold Kushner writes: “We often find ourselves asking why ordinary people, nice friendly neighbors, neither extraordinarily good nor extraordinarily bad, have to face the agony of pain and tragedy. If the world were fair, they would not seem to deserve it. They are neither very much better nor very much worse than most people we know; why should their lives be so much harder?”¹

    Rabbi Kushner points out what many before him have witnessed: that particularly in the past, people have tried to make sense out of illness...

  31. Notes
    (pp. 261-270)
  32. Index
    (pp. 271-280)