Post-Polio Syndrome: Guide for polio survivors and families

Author: Dr. Julie K. Silver M.D. Published year: 2001 Downloads: 2
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Foreword

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, that the Salk vaccine was safe and effective. Since then, for most Americans, the epidemics have passed into oblivion, and polio no longer refers to disease but to a vaccine. Yet for many thousands, the legacy of our nation’s brief rendezvous with polio is still very much a part of our personal histories and daily lives.

In the late 1970s, reports began to surface that people who had recovered from paralytic polio decades earlier were developing unexpected health problems such as excessive fatigue, pain in muscles and joints, and-most alarming of all-new muscle weakness. Because there was little in the modern medical literature about delayed neurological changes in polio survivors, the initial response of many physicians and other healthcare workers was skepticism, if not outright ridicule. To complicate matters, this cluster of symptoms had no name. And without a name, there was, in essence, no disease. Having a name-even if imprecise and misleading as to cause-helps establish an identity and an element of legitimacy. A name also makes it possible to begin the long journey from ignorance to understanding, and perhaps even to a cure. This journey finally began in the 1980s, when the many thousands of persons experiencing the late effects of polio started to attract the attention of the medical community. The term Post-Polio Syndrome (PPS) was coined.

Yet Post-Polio Syndrome was not a new disorder after all. Under a different name, the symptoms were first described in the French medical literature as far back as 1875; then, as often happens in medicine, they were forgotten. Over the next century, approximately thirty-five reports on post-polio weakness were published in the world’s medical literature. Why these late effects of polio remained until recently an obscure and largely unexplored corner of medicine is unclear. Few diseases are as widely prevalent or have been as intensively investigated. Possibly because of the rapid and dramatic onset of symptoms, often followed by a near-miraculous recovery of function, polio was viewed primarily as a classic example of an acute viral illness. Most of the scientific energy and resources employed were directed at early management and prevention, with virtually no research into long-term sequelae or after-effects. Medical textbooks classified paralytic polio as a static or stable neurological disease.

Fortunately, the early 1980s saw a change. In May 1984 the first medical conference on PPS was held in Warm Springs, Georgia, to clarify causes and treatments and identify the major research questions. The subsequent years saw a marked increase in the attention focused on PPS by researchers and clinicians. The results were a more precise definition, a better understanding of possible causes, and more effective management. In 1994 the New York Academy of Sciences and the National Institutes of Health cosponsored another medical conference that culminated in the publication of a special issue of the Annals of the New York Academy of Sciences entitled ‘‘The Post-Polio Syndrome: Advances in the Pathogenesis and Treatment.’’ Although much remains to be learned, that conference signaled acceptance of PPS by the medical establishment as a legitimate clinical entity. Polio survivors and their new problems had indeed come a long way.

However, for many of us, the journey is far from over. Our polio disabilities, often compounded by aging and other health conditions, remain a daily struggle as our independence and quality of life continue to erode. On a broader level, we are like wounded veterans from some forgotten war whose presence has vanished from the national consciousness. Funding for desperately needed research is woefully inadequate, presenting a different kind of struggle with its own frustrations and disappointments, including the erosion of hope. There still is no diagnostic test for PPS, and the underlying causes remain ambiguous. While numerous treatments have been proposed, definitive therapies for most problems are unlikely for years to come.

In the meantime, our best recourse is improved management based on what we do know, which is exactly what Julie Silver prescribes in Post-Polio Syndrome. This book is much more than another skillful, comprehensive review of the literature dealing with the symptoms and treatment of the late effects of polio. It belongs to that small, select group of medical texts that is stylish, informative, and a pleasure to read. As Dr. Silver states in her preface, she wrote this book for a wide audience, including healthcare professionals and friends, and family members of persons who had polio years ago. While these groups will enjoy and profit from this volume, the greatest beneficiaries will be the polio survivors themselves. Another title for this volume could have been Everything You Always Wanted to Know About Post-Polio, But Didn’t Have an Expert to Ask. Well, now you have one. You will meet her in these pages, which are crammed with up-to-date information and useful anecdotes designed to help prevent or minimize further disability and to improve the quality of your life.

I had the pleasure of working with Dr. Silver during her residency in Physical Medicine and Rehabilitation during the early 1990s, but her expertise with polio was predated by many years of our time in the Post-Polio Clinic in Washington, D.C. Although she never had the disease herself, she had the uncommon experience of growing up with polio; her mother, uncle, and grandfather all were polio survivors. I believe this background explains why she communicates a sense of comfort as well as competence. It is as though she has been diagnosing and treating polio problems all her life. But Dr. Silver is clearly more than a well-informed ‘‘polio doc.’’ Her writing conveys a sense of commitment and affection for her patients, qualities to which I can attest from personal observation.

Finally, she writes about the importance of finding a physician who is both knowledgeable and sympathetic to the kinds of problems persons with polio are experiencing. Fortunately for her patients, she has both these qualities, a fact that helps to explain why she has such a busy practice and is so widely admired by patients and colleagues alike. Individuals who have Dr. Silver as their physician are truly fortunate. For those who cannot be treated by her personally, reading her book is the best alternative.

Lauro S. Halstead, M.D.
 

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