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

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

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Product Details

ISBN-13: 9780300088083
Publisher: Yale University Press
Publication date: 09/28/2002
Pages: 304
Sales rank: 859,053
Product dimensions: 5.50(w) x 8.25(h) x (d)

About the Author

Julie K. Silver, M.D., is the Medical Director of the International Rehabilitation Center for Polio (IRCP) at Spaulding Rehabilitation Hospital in Massachusetts. Dr. Silver is also an assistant professor at Harvard Medical School in the department of physical medicine and rehabilitation. Lauro Halstead is director of the Post-Polio Syndrome Program, National Rehabilitation Hospital, Washington, D. C.

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Post-Polio Syndrome

A Guide for Patients and Their Families
By JULIE K. SILVER

Yale University Press

Copyright © 2001 Yale University
All right reserved.

ISBN: 978-0-300-08808-3


Chapter One

Polio-A Look Back

Polio is spectacular, the way it strikes, the way it kills, the way it leaves its trademark. - ROBERT F. HALL, Through the Storm

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 a "debility" of the lower extremities. Prior to the twentieth century, polio occurred sporadically and affected relatively few people. Thus, descriptions and understanding of the disease were quite limited.

The situation changed dramatically when epidemics swept across the United States and many other parts of the world in the late 1800s. The first were described inScandinavian towns in the 1880s and 1890s. Then, in 1894, a small town in Vermont reported forty-four cases of paralytic polio. The dreadful shift from an endemic disease, which occurred infrequently and was overshadowed by many other contagious diseases such as smallpox and diphtheria, to a disease of epidemic proportions, which eventually killed and maimed millions of people, is remarkable. In less than a decade, polio would become a menacing disease that attacked hordes of children and adults with a vengeance unlike that of any other illness. In her eloquent memoir entitled In the Shadow of Polio, Kathryn Black describes the alarming way in which polio could infect an individual and be almost unnoticed, and in another person seriously maim or even kill. Black writes: "Polio varies widely not only in its intensity but in its lasting effects. Children can hover near death fully paralyzed and recover completely, or they can be left with paralysis ranging from the inconvenient to the tragic."

Polio's transformation to an epidemic that topped the country's social and political agendas in the first half of the twentieth century was paradoxically due in large part to technological advances. Naomi Rogers, in Dirt and Disease, describes how the period from 1890 to 1920 (the Progressive Era) brought about the relatively new concept that germs are transmitted in unsanitary conditions. This germ theory prompted authorities at all levels to encourage greater cleanliness, which was to be manifested in a variety of ways from improved personal hygiene to more sanitary water sources. Rogers notes that this effort had social and political implications as well: "As health officials guarded the community's health by keeping food, water, and streets clean, disease became a sign of individual irresponsibility, a failure to carry out the well understood rules of modern hygiene." Sadly, while the improvements in sanitation markedly reduced many of society's former ills, it unpredictably allowed polio to flourish. The notion was well ingrained that if people bathed regularly, washed their hands, kept their homes clean, and treated their sewage, they would be safe from germs and disease. How could it be that polio did not play by the rules? Edward Tenner summarizes the counterintuitive way in which the polio epidemics are thought to have evolved: "As early as the 1920s and 1930s, epidemiologists were finding that the crusade for cleanliness at the beginning of the century, far from combating polio, was promoting it. When all infants acquired the virus in the first days of their lives, while still protected by antibodies from their mothers' blood, paralysis was almost unknown. Epidemics became most severe where standards of plumbing and cleanliness were highest. There, young people were first exposed to the virus long after the end of maternal immunity."

This theory is now widely accepted. If a child is exposed to the polio virus in infancy while the mother's antibodies are still present, the child is able to produce his or her own antibodies without ever contracting the disease. It is known that, years ago, individuals infected with the polio virus would shed the virus in their stools. Water supplies contaminated with that fecal material would provide the early exposure babies needed in order to develop a natural immunity to polio. When sewage treatment plants became widely available, the polio virus was largely eradicated from the usual sources that provided infants with this exposure. Thus, the polio epidemics followed a pattern of primarily occurring in areas of socioeconomic privilege, where sanitation was widely available.

During the epidemic years, when little was initially known about the transmission of polio, theories abounded. Moreover, as with any serious illness in which a cure or vaccine seems unlikely in the near future, prevention became the focus. From all avenues came theories of how to prevent polio; they ranged from the outrageous to the implausible to the possible. Fear of the unknown fueled a near-panic state. Many parents guarded their children during the spring and summer months, when polio was most likely to occur. There are many tales of mothers allowing their children out only after dark, or only with gloves on their hands. Sometimes children were sent away to summer camps in the hope that a remote region would be safer. Others were kept home, with vacations canceled for fear that traveling would expose children to the illness. They were cautioned not to drink from fountains. Swimming, then the only way to cool o during the hot summer months, was frequently forbidden. One mother told me she kept her three young sons in the house the entire summer and never once let them go outdoors during a polio epidemic in her Massachusetts town. Here is what it was like during the early epidemic years.

The mothers are so afraid that most of them will not even let the children enter the streets, and some will not even have a window open. In one house the only window was not only shut, but the cracks were stuffed with rags so that "the disease" could not come in. The babies had no clothes on, and were so wet and hot they looked as though they had been dipped in oil, and the flies were sticking all over them. I had to tell the mother I would get the Board of Health after her to make her open the window, and now if any of the children do get infantile paralysis, she will feel that I killed them. I do not wonder they are afraid. I went to see one family about four p.m. Friday. The baby was not well and the doctor was coming. When I returned Monday morning there were three little hearses before the door; all her children had been swept away in that short time. The mothers are hiding their children rather than give them up.

Because no one knew how polio was transmitted, people legitimately were afraid to be around anyone who had recently contracted the disease. I have thought a lot about the young doctor mentioned earlier who cared for my grandfather when he had polio. In the middle of my grandfather's hospital stay, this doctor reportedly contracted polio himself and died. Polio survivors have told of being placed in isolation for fear they would spread the disease. Children were frequently taken from their homes and forced to fend for themselves in hospital rooms with only the most perfunctory nursing care. Many polio survivors have haunting memories of feeling abandoned by their parents, who either were not allowed to visit their children at all or were permitted only brief visits, sometimes from behind a curtain or glass window. Further devastating to these children was the fact that often all of their possessions were burned or discarded, for fear that those might somehow spread the disease. Unfortunately, many polio survivors continue to live with the psychological wounds that were inflicted when they were sick and in pain, and their familiar world instantaneously disappeared as they were literally whisked out of their parents' arms and placed in a sterile hospital bed.

For many polio survivors, looking back is a painful process. Perhaps because the psychological wounds never healed as fully as the physical ones. The ignorance and fear that ran rampant were powerful forces in determining how individuals infected with the polio virus would be medically treated. Admittedly, it is easy to look back and criticize the manner in which many polio survivors were treated; yet the fact remains that their medical care was crude, based on ignorance, and in some instances downright harmful. It is only retrospectively that we know how traumatized polio survivors were, not from the disease itself or from the resulting disability, but from the way they were treated in a "safe" hospital environment. We now know that although many survivors were cared for at home by loving parents, or in hospitals by compassionate doctors and nurses, others were not so fortunate. Some were abused, and those who were children at the time of their illness were the most vulnerable. Frank accounts of sexual and physical abuse have been reported by polio survivors who have found the courage to confront these painful issues. The following excerpt is from A Summer Plague:

The nursing care was just appalling. I was largely incontinent unless I had someone there to give me a bedpan or a bottle the moment I needed it, because I couldn't move at all. However I was strapped in the bed, and strapping in the bed was used as a punishment if you wet the bed or shit yourself or whatever. Looking back now, I can hardly believe that young kids, some of whom couldn't have been more than a year old, were smacked for wetting themselves.

I had difficulty swallowing and breathing because I'd had bulbar polio, but when I didn't want my food they used to hold my nose and stuff greens down my throat-greens not being my favourite thing.... I was put out in the sun at one stage and just left there, and I ended up with a sunburned face, quite severe sunburn. That was another way of punishing you-roll out on the bed and leave you there in the sun. These are things that are difficult to pin down if you're trying to accuse somebody, but when you're experiencing them you know. Also things like leaving me unattended in the bath-I mean, I could've drowned because I couldn't hold myself up; I was still virtually paralyzed.

Regardless of whether an individual had a nurturing experience or was severely abused during the acute illness, polio survivors en masse were encouraged to get on with their lives and get back to "normal." Marc Shell, a polio survivor and professor of comparative literature at Harvard University, teaches a course on the history of paralysis. He mentioned to me that as he read the essays of polio survivors he detected strong feelings of denial (which come across as a rather peculiar optimism) permeating the memoirs. In part, these feelings may reflect societal expectations that the survivors adopted and incorporated into their own psychological belief systems.

One recurrent theme is that polio was actually a blessing in disguise and helped change the life course of the individual in a positive manner. Dr. Richard Owen, who has done substantial research on the topic of Post-Polio Syndrome, describes how polio changed his life: "Instead of sports and fighting, I started to put my energies into my studies. I could no longer compete on the athletic field, but I could compete in the classroom. Therefore, I think polio made me into more of a scholar after my first twelve years of being very unscholarly. It made me want to do better than other people in school because I wanted to prove myself. If I hadn't had polio, I probably wouldn't have gone to medical school, and I have no idea what else I might have done for a career."

Dr. Lauro Halstead, a polio survivor and a world-renowned expert on PPS, explains how denial and the ability to persevere both helped and hindered him:

My own experience taught me the mixed blessings of denial. I had recovered and yet did not feel disabled; nor did I grieve. Even though my right arm remained largely paralyzed, I did not think of myself as handicapped. That kind of magical thinking was apparently not unusual among polio patients. Our desperate struggle to survive, work hard, and excel led to a series of negative lessons that I believe many of us polios learned, whether we realized it or not. We developed strong denial systems that have kept many of us distanced from the voices of our bodies. We are horrified and outraged at the possibility of being sick again, and we don't want to know that what we worked so hard to achieve might be lost. I believe this helps explain why so many polios are reluctant to seek help when they develop weakness in both themselves and others. By walling themselves up, they thus isolate from new disasters and become detached from their own feelings.

Dr. Halstead's words are quoted from a chapter he wrote, titled "The Lessons and Legacies of Polio." I routinely distribute this chapter with other polio materials to patients and to polio survivors who attend my lectures. Time and time again, people have come back to me and said that Halstead's words resonate with their own unresolved feelings of denial. Interestingly, polio survivors as a group tend to be very intelligent, hardworking, and successful. The denial mechanisms that are so deeply rooted in their past have served them well in terms of their accomplishments. However, these same denial mechanisms may deter some of them from seeking help when physical or psychological healing is a necessity.

Perhaps the most magnificent lessons in the art of denial came from Franklin Delano Roosevelt. Wildly successful in his professional life, FDR was unable to walk even a step without the assistance of bodyguards who would literally carry him. In a moving portrait of the former president, entitled FDR's Splendid Deception, award-winning author Hugh Gallagher describes the fantastic illusion Roosevelt maintained in order to deny his disability: "Although there are over thirty-five thousand still photographs of FDR at the Presidential Library, there are only two of the man seated in his wheelchair. No newsreels show him being lifted, carried, or pushed in his chair ... This was not by accident. It was the result of a careful strategy of the President. The strategy served to minimize the extent of his handicap, to make it unnoticed when possible and palatable when it was noticed. The strategy was eminently successful, but it required substantial physical effort, ingenuity, and bravado. This was FDR's splendid deception."

(Continues...)



Excerpted from Post-Polio Syndrome by JULIE K. SILVER Copyright © 2001 by Yale University. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents

Forewordix
Prefacexiii
1Polio--A Look Back1
2Post-Polio Syndrome12
3Nonparalytic Polio and Post-Polio Syndrome21
4Finding Expert Medical Care27
5The EMG Controversy38
6Prevailing over Pain44
7Preserving and Protecting Your Arms53
8Sustaining Strength62
9Fighting Fatigue68
10Controlling Cold Intolerance80
11Respiratory Problems83
12Swallowing Issues91
13Exercise Essentials103
14Energy Conservation and Pacing122
15Nutrition and Weight140
16Preventing Falls and Further Disability144
17Keeping Bones Healthy and Strong159
18Mobility170
19Bracing, Shoes, and Assistive Devices177
20Wheelchairs and Scooters186
21Surgical Considerations198
22Complementary and Alternative Medicine209
23Designing a Safe and Comfortable Living Environment216
24Insurance and Disability Benefits228
25Sex and Intimacy237
26Coping with Polio and Post-Polio Syndrome249
Notes261
Index271

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