A Guide to
Living Well with Post-Polio Syndrome
edited by Lauro S. Halstead
ISBN 1-886236-17-8 (Hardcover)
ISBN 0-9661676-0-0 (Paperback)
STOP PRESS. New fully revised 2006 2nd edition available. See NRH site for full details including ordering information. Please note the details below currently refer to the 1st edition.
|Introduction||Topics Overview||Contributing Authors||Ordering Information||About
The following "Introduction" is from the book and is included here with the permission of Dr. Halstead.
According to the World Health Organization, polio is finally on the verge of extinction. After a run of many millennia, it is now predicted that acute paralytic poliomyelitis 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. In fact, the main events were packed into a span of only 39 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 sunk into oblivion and polio no longer refers to a disease but a vaccine. Yet, for many thousands of us, the legacy of our nation's brief rendezvous with polio is still very much a part of our personal histories and daily lives.
Beginning with our first encounter with this summer plague, many polio survivors tell a story of struggle and triumph: the sudden, random onset of paralysis, the gradual restoration of strength, seemingly as a result of individual willpower, and finally, achieving a full and productive life, which led us to believe we had put polio behind us. This story, for most, was made possible by denying our disability and the reality of what was lost and the life that might have been. While this kind of denial is not unique to polio, its unyielding persistence is unusual. Virtually every polio survivor I have met has displayed an element of this self-deception. Until recently, most of us tended to avoid other polio survivors and even persons with disabilities. We knew we weren't physically normal, but, if we thought about it at all, we considered ourselves as inconvenienced, not disabled. By retraining the muscles that remained, we felt we could do just about anything, even become President of the United States, like Franklin Delano Roosevelt.
It has now been almost two decades since the term post-polio syndrome (PPS) entered our lives. Even though the occurrence of new weakness and other symptoms several decades after acute polio was described many years ago in the medical literature, our experience with these symptoms was new and unexpected. For many of us, the denial was still intact, which made understanding and accepting the new changes all the more difficult. As we began to acknowledge the fact that we were disabled, we were overcome by feelings of anger, bitterness, and despair.
Fortunately, the feelings did not stop there. The knowledge and skills of how to not just endure but prevail, to paraphrase Faulkner, were still intact. Our shared history of knowing how to overcome adversity led us to take action that, once again, turned our lives around and made us feel proud to be called survivors. One step was to stimulate the medical community to take our new health problems seriously. Over the years, this has led to a significant increase in the attention given to polio by researchers and clinicians leading to a more precise definition of PPS, a better understanding of the possible causes, and the development of more rational and effective strategies for its management.
Another step was reaching out to others, specifically others who had polio and were experiencing similar new problems; but it wasn't just to find others that hundreds of support groups emerged from nowhere overnight. It was, more importantly, part of a journey of self-discovery. In my own case, it was only after I joined a local support group and began talking with other polio survivors that I started to grieve the body I had lost more than three decades earlier. Although I still have not made peace with my disability, and probably never will, I am getting better at incorporating it into my life and the person I am. One of the reasons it is hard to find this peace is that my disability keeps changing: as I age, as I develop other infirmities, as it progresses.
This leads to one of the goals for this book. It was written and edited partly to help me deal better with my own unique disability and, at the same time, to help the many thousands of other polio survivors in this country and around the world deal more effectively with their unique version of polio disability. Despite a lot of hard work, this book is not the last word on PPS. That book will have to wait. It may be many more years -- maybe never. In my own mind, I am still not entirely certain what PPS is. There is no question, however, there are new symptoms, most importantly, new weakness, related to the earlier paralysis -- whether that paralysis was catastrophic or passed like a shadow in the night. What I am not clear about is whether there is a single entity that we wisely label PPS or several entities that, out of ignorance and for convenience, we call PPS until our knowledge becomes more sophisticated. In the meantime, there is no doubt that giving the symptoms a name has been helpful. Without a name, it does not exist for practical purposes: people cannot talk about it, scientists cannot study it, and authors cannot write articles and books to educate and inform others.
Another goal in writing this book was to distill and summarize in lay terms the wealth of information presented at conferences and published in the medical and allied health literature over the past 10 to 15 years. In the process of describing clearly and accurately what is felt to be most important, it is sometimes necessary to opt for fewer details and technical explanations. For readers who would like more information on a specific topic, there are references and resources listed by chapter in the Appendix. While a reader-friendly book is a worthy goal, not many friends or other readers are likely to purchase it if the cost is too high. With this in mind, we were fortunate to obtain outside funding from three foundations (The JM Foundation, Roger S. Firestone Foundation, and Kiplinger Foundation) to keep the final price of the book reasonable, and hopefully, within reach of all who would like to obtain a copy.
A third goal was to give these pages a tone of authenticity. Almost all of the authors are polio survivors or persons who have had extensive experience working or living with polio survivors. In addition, the Appendix contains first person accounts by seven individuals in various stages of their lifetime struggles and triumphs with polio and post-polio syndrome. These stories provide eloquent testimony to the many ways people have prevailed in the face of ongoing disability. These experiences complement in more personal and human terms the material presented in the earlier chapters of the book. Finally, a goal of all of us who contributed to this volume was to provide practical information and useful strategies for managing PPS with the hope of helping each reader achieve a healthier and more enjoyable life.
Copyright © 1998 Lauro S. Halstead, M.D.
Managing Post-Polio is arranged in chapters based on the varied areas of interest. Topics covered include:
Lauro S. Halstead, M.D.,
Director, Post-Polio Program National Rehabilitation Hospital, Clinical
Professor of Medicine Georgetown University School of Medicine
Ruth Wilder Bell, R.N., D.N.Sc., Past President, the Polio Support Group of Central Maryland.
Nancy E. Bogg, M.Ed., C.R.C., C.O.M.S., C.C.M. Rehabilitation Counselor.
Nancy B. Carter, B.A., M.Ed., Psych. Founder and former Director, Nebraska Polio Survivors Association.
Hugh Gregory Gallagher, B.A., M.A. Oxon (Honors) Writer, Historian.
Anne C. Gawne, M.D., Assistant Professor University of Alabama School of Medicine Birmingham, AL Director, Post-Polio Clinic Roosevelt Warm Springs Institute for Rehabilitation.
Carol Gill, PhD., Assistant Professor and Center Director, Chicago Center for Disability Research, Institute on Disability and Human Development, University of Illinois at Chicago.
Stanley L. Lipshultz, J.D., C.P.C.U. Partner, Lipshultz and Hone, Chtd., Past President, Polio Society, Past President, Achilles Track Club.
Kathryn R.B. McGowen, M.A. Graduate Stident in Medical Anthropology Case Western Reserve University.
Naomi Naierman, M.P.A., President, Health Care Ventures.
Beverly Neway, M.S., C.R.C., Director, Vocational Rehabilitation Services, National Rehabilitation Hospital.
Rhoda Olkin, Ph.D., Professor of Clinical Psychology, California School of Professional Psychology.
Liina Paasuke, M.A., C.R.C., Rehabilitation Counsellor, Michigan Jobs Commission Rehabilitation Services, Michigan Polio Network, Co-Facilitator, Post-Polio Connection Support Group.
Sunny Roller, M.A., Project Manager, Research Fellow, University of Michigan Medical Center.
Julie K. Silver, M.D., Medical Director, Spaulding Neighborhood Rehabilitation Center at Frangingham, Instructor in Physical Medicine and Rehabilitation, Harvard Medical School, Consultent in Neurology, Massachusetts General Hospital.
Laura K. Smith, Ph.D., P.T., Consultant, Post-Polio Clinic, The Insitute for Rehabiltation and Research.
Doris Staats, B.A., Former Board of Directors, Polio Society.
Joyce Ann Tepley, L.M.S.W./A.C.P., L.P.C., Licensed Clinical Social Worker.
Tom Walter, B.A., Volunteer Community Facilitator for Post-Polio Activities for America On-Line (AOL).
Grace R. Young, M.A., O.T.R., San Joaquin Valley Rehabilitation Hospital.
Managing Post-Polio was made possible thanks in large part to the generosity of the following organisations:
Roger S. Firestone Foundation
The Kiplinger Foundation
STOP PRESS. New fully revised 2006 2nd edition available. See NRH site for full details including ordering information.
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Document preparation: Chris
Think-tank, Cornwall, United Kingdom.
Created: 5th March 1998
Last modification: 21st January 2010.