Managing Post-Polio

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

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.

Lauro S. Halstead, M.D.
February, 1998

Copyright © 1998 Lauro S. Halstead, M.D.

Topics Overview

Managing Post-Polio is arranged in chapters based on the varied areas of interest. Topics covered include:

Acute Polio and Post-Polio Syndrome Lauro S. Halstead, M.D.

While acute paralytic poliomyelitis is nearing extinction, our understanding of post-polio syndrome continues to expand. This chapter summarizes the epidemiological aspects of post-polio syndrome, its definition and the relation of acute polio to post-polio syndrome. There is also a concise review of the current research about the cause or causes of post-polio syndrome.

New Health Problems in Persons with Polio Lauro S. Halstead, M.D.

The major symtoms associated with post-polio syndrome include new weakness, generalized fatigue and pain in muscles and joints. This chapter provides a systematic approach to the evaluation, differential diagnosis and management of these and other new health problems in the polio survivor. this comprehensive discussion includes special sections on "bracing and pacing," exercise and surgical considerations.

Aging, Co-Morbidities and Secondary Disabilities in Polio Survivors Julie K. Silver, M.D.

What are co-morbidities and secondary disabilities? How do they relate to aging? These and other questions are discussed in this chapter which also addresses the role each of these issues play and how they can be minimized to maintain optimum function.

How to Find Expert Medical Care Julie K. Silver, M.D.

Finding Physicians who are knowledgeable about post-polio syndrome may feel like looking for a needle in a haystack. Fortunately, post-polio syndrome is becoming more widely recognized and understood, and health care providers are becoming more experienced in its management. While accessing first rate medical care may still be challenging, this chapter provides a number of practical, "insider" guidelines to make the process easier and more successful.

Energy Conservation Grace Young, M.A., O.T.R

For most persons with post-polio syndrome, energy conservation is the centerpiece of a successful treatment program. By understanding the neurological basis of polio's late effects and respecting the body's requirements for activity, rest and minimizing stress, life can still be full and enjoyable. This chapter provides sepcific guidence to accomplish these goals by making modifications in the environment, improving body mechanics and with the prudent use of adaptive equipment and personal assistance.

Life Style Changes: Taking Charge Laura K. Smith, Ph.D., P.T.

As many health professionals are unaware or uninformed about the management of post-polio syndrome, this chapter outlines the steps polio survivors can take to become more intelligent consumers and develop a self-directed treatment program. Included is a detailed description of the physical therapy management of fatigue, muscle pain and new weakness, together with practical advice on the evaluation and treatment or repetitive muscle and joint injuries.

Psychosocial Dimensions of Polio and Post-Polio Syndrome Rhoda Olkin, Ph.D.

This chapter presents a perceptive analysis of the polio/disability experience and the way it affects how polio survivors see themselves, how they are seen by others, and how these perceptions influence the disabled person's daily life and social interactions. Included are several lists of challenging questions to help individuals clarify their own feelings and behavior from a disability perspective.

Polio/Post-Polio Syndrome and Specific Life Tasks Rhoda Olkin, Ph.D.

This chapter discusses the impact of polio on the disabled person's role in the family with regard to parents, siblings, spouses and children. In addition, the author provides thoughtful insights and advice for polio surviviors about such issues as dating, romance, sexuality, pregnancy, childbirth and aging.

Journeying Together: Post-Polio Support Groups Nancy Carter, B.A., M.Ed. Psych. / Ruth Wilder Bell, R.N., D.N.Sc

There are over 300 post-polio support groups in the U.S. and Canada. This chapter describes the evolution of this phenomenon and the extraordinary potential inherent in every support group experience. The authors present practical advice about the basic elements of a succesful support group and how to maintain these "communities" so members feel both a sense of ongoing commitment and enrichment.

Vocational Strategies Beverly Neway, M.S., C.R.C. / Liina Paasuke, M.A.C.R.C / Nancy Bogg, M.Ed., C.R.C., C.O.N.S., C.C.M.

Given the symptoms persons with post-polio sustain, many face new challenges to their work life. To retain a current job or to adapt to new work, a myriad of options are available, ranging from simple changes in workplace environment to total job restructuring. This chapter offers a wide variety of innovative suggestions for those who choose to remain vocationally active.

Navigating Managed Care Naomi Naierman, M.P.A. / Kathryn R.B. McGowen, M.A.

Decisions about health and disabilty insurance are important to everyone. They can be critical to persons with post-polio health problems. To get the needed coverage and services, it is essential to master the language and underlying concepts of managed care and to become forceful advocates. This chapter outlines the features in health and disability insurance most important to post-polio individuals and offers specific strategies for navigating through the ever-complex maze.

Playing the Social Security Benefits Card Naomi Naierman, M.P.A. / Kathryn R.B. McGowen, M.A.

Persons with polio have often done remarkably well over the years in achieving gainful employment. With the onset of new health problems, many strive to maintain their financial independence, yet still face a reduction in income from work or lose the ability to work at all. This chapter outlines the qualifications and steps to take to receive financial assistance under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) Programs.

A Guide to the Internet for Polio Survivors Anne Gawne, M.D. / Tom Walter, B.A.

The computer revolution is here to stay and the Internet with it. The Net provides an extraordinary opportunity to exchange ideas, participate in a different kind of support group and obtain up to date information (and misinformation). This chapter provides a brief history of the background and development of the Internet and the World Wide Web and describes how polio survivors can make best use of this expanding resource.

Personal Stories Joyce Tepley / Doris Staats / Hugh Gregory Gallagher / Carol Hill / Sunny Roller / Liina Paasuke / Nancy Baldwin Carter / Stanley Lipshultz

This chapter presents the experiences of eight polio survivors 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 not only survive, but seek to prevail in the face of ongoing disabilty. These experiences complement in more personal and human terms the material presented in the earlier chapters of the book.

Contributing Authors

Lauro S. Halstead, M.D., Director, Post-Polio Program National Rehabilitation Hospital, Clinical Professor of Medicine Georgetown University School of Medicine Washington, DC.
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:

The JM Foundation
Roger S. Firestone Foundation
The Kiplinger Foundation

Ordering Information

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 Salter, Original Think-tank, Cornwall, United Kingdom.
Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/booklist/managing.html>
Created: 5th March 1998
Last modification: 21st January 2010.