Customer Reviews

Managing Post Polio: A Guide to Living Well with Post Polio

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From Jack Trombadore Book Reviews, New Jersey Polio Network NEWSLETTER, Fall, 1998.

Acute paralytic polio will be eliminated world-wide in a few years. Yet, says Dr. Lauro S. Halstead, MD, for many hundreds of thousands in the United States and elsewhere, the legacy of polio is "... still very much a part of our personal histories and daily lives."

That legacy is variously called "the late effects of polio," "post-polio sequelae," "post-polio progressive muscular atrophy," "post-polio muscle dysfunction," and most commonly "post-polio syndrome," or "PPS."

In a continuing effort to provide the latest medical and scientific information on post-polio, and the most useful strategies for managing PPS, Dr. Halstead and co-editor Naomi Naierman have joined several professional and medical contributors in bringing us this invaluable collection.

The editors have also included first person accounts of the experiences of seven polio "survivors," including those of Hugh Gallagher and Sunny Roller.

An internationally recognized authority on post-polio syndrome, Dr. Halstead tells us that PPS is a neurological disorder that produces a cluster of symptoms, or a syndrome, in people who had paralytic polio many years earlier.

These problems typically occur after a period of functional and neurological stability of at least 15 years following the initial episode of polio and include new weakness, fatigue, decreased endurance and loss of function. Some researchers also include muscle and joint pain. Less commonly, the symptoms include muscle atrophy, breathing and swallowing difficulties and cold intolerance. Much of Dr. Halstead's discussion is devoted to the evaluation, differential diagnosis and practical, useful recommendations in the management of each of these symptoms.

Some of these symptoms (weakness, fatigue and atrophy) appear to be caused by a progressive degeneration or impairment of motor units, whereas other symptoms (muscle and joint pain) are more likely caused by excessive wear and tear on different parts of the musculoskeletal system.

Dr. Halstead's explanation of the mechanics and effects of polio's attack on the body's nerve cells and muscles is clear, detailed, intelligible and fascinating.

Julie K. Silver, MD, discusses Aging, Comorbidities and Secondary Disabilities in Polio Survivors. Muscular weakness in polio survivors due to overuse together with weakness from normal aging combine to cause profound changes in strength. A polio survivor suffering with a comorbidity, heart disease, for example, may suffer severe symptoms of fatigue, which may be caused by PPS or the heart disease or by both. She also analyzes the serious debilitating effect of a secondary disability, such as that caused by a fall and fracture, on a polio survivor with PPS.

Dr. Silver contributes an additional valuable chapter with a systematic and organized five-step process in How to Find Expert Medical Care.

In Energy Conservation, Grace R. Young, MA,OTB, provides many suggestions for compensating for muscle weakness, including correct posture and seating, while working or resting, the placement of your knees and feet while seated, the height and shape of your chair, correctly carrying and lifting objects, from a coffee mug to a heavy pot, package, purse or clothes on a hanger, and the placement of your computer keyboard and monitor. Numerous other tips are offered to make your kitchen, bathroom, entire home, and even your car more user-friendly.

Laura K. Smith, PhD, PT, provides a thoughtful chapter, Lifestyle Changes: Taking Charge, embracing principles of self-treatment with the help of health professionals on issues of muscle strength recovery, and the effects on the survivor's body of long-term overuse - and sometimes disuse - of the muscles and joints. Dr. Smith sets forth a specific program to alleviate the fatigue and pain of PPS and another to slow the rate of new muscle weakness.

Rhoda Olkin, PhD, presents a many-faceted study of the psychological and social problems facing polio survivors in the first of her two excellent articles, Psychosocial Dimensions of Polio and Post-Polio Syndrome. How do we perceive ourselves and how do others perceive us?

In Polio/Post-Polio Syndrome and Specific Life Tasks, Professor Olkin deals with the dynamics of families of persons with disabilities, assistive devices, and frank discussions of romance and dating, sexuality, marriage, pregnancy, childbirth, and aging.

Nancy Baldwin Carter, BA, M Ed, Psych, and Ruth Wilder Bell, RN, DNSc, share their knowledge and experience in organizing and maintaining a meaningful support group in Journeying Together: Post-Polio Support Groups.

Beverly Neway, MS, CRC., Liina Paasuke, MA,CRC, and Nancy E. Bogg, M Ed, CRC, CDMS, CCM, co-author Vocational Strategies, a chapter that stresses the process of re-establishing employment goals that have been seriously affected by PPS. They strongly recommend obtaining the help of a qualified vocational rehabilitation counselor in the process that includes job analysis, functional capacity evaluation, job market, job search, and reasonable accommodations.

In Navigating the Managed Care Maze, co-editor Naomi Naierman, MPA, shows us how to deal with managed care health insurance companies which too often consider only the bottom line. She writes that the best strategy is to be an informed consumer, knowing and exercising choices and legal rights. This is particularly true for persons with PPS, a chronic condition that invites the worst abuses and practices from too many managed care companies.

Playing the Social Security Benefits Card is a brief review by Kathryn R.B. McGowan, MA, of benefits that may be available from the federal government under Social Security Disability Insurance (SSDI) and under Supplemental Security Income (SSI). The author sets out qualification criteria and information on applications and appeals.

A Guide to the Internet for Polio Survivors is provided by Anne C. Gawne, MD, and Tom Walter, BA, with tips on E-mail, post-polio resources on the Web, and much more.

Hopefully, Dr. Halstead and friends will share their research, findings, knowledge and expertise with all polio survivors and PPS sufferers on a continuing basis.

I'm 52 years old and it has been 50 years this year since I became involved with poliomyelitis, I am in the 1-2% who suffered paralytic polio. Not knowing any better, and because my parents never treated me any different than my brothers or sister. I lived what I thought was a normal life growing up. I've worked six days a week for the past 35 years, and raised two childern with the help of my wife of 32 years. In the early 80's I began to notice that things that I used to be able to do like play catch with my son, were becoming more difficullt. Not all at once but a little bit at time I began to notice I was not able to reach my left arm across my body. Now I cannot step up on the curb like I could 15 months ago. Here I was thinking that I had overcame this challange, but I began to notice that my old enemy had returned. Dr. Halstead has written the bible for all of us who have or are receiving a return visit by polio. Thank-you Dr. Halstead I would like to have your e mail address so I could tell you how much your efforts have meant to me. Listen all of my polio brothers and sisters trust me you won't regret purchasing this book.

I read this book in paperback as it was sent to me by our state PostPolio group....I was amazed that there, in one book, were the answers to some of the questions that some of the many Drs. I've consulted NEEDED in order to treat me properly and with efficacy. It also answered many of the questions *I* have had, but nobody ever had the answers to...a common problem with PPS'ers. Dr. Halstead has done us ALL a favor and a service by writing this. I will give the copy I just ordered to my primary care physician, who, luckily, CARES! He in turn, will share it with others....there is power in knowledge! Unfortunately, many of we PPS'ers, don't meet many people who DO know!

I have enjoyed all the information in this book. It is written by many people who are themselves experiencing Post Polio Syndrome, and it covers a variety of information from possible lifestyle modifications to PPS information and support groups (local as well as on the Internet). I learned some things I didn't know, and that alone made this book worthwhile to me. I'd recommend it to other PPSers, or anyone who knows someone going through life with PPS.

I agree with the thorough review of this book by Jack Trombadore and the other person from Baltimore: 5 stars! This book has so much good information on Post Polio Syndrome. We, Polio survivors now experiencing these late effects, have so few resources and this book fulfills the need for information and support so beautifully!

I'd like to alert readers to a related book by one of the authors in this book. Rhoda Olkin, Ph.D., has written a book called WHAT PSYCHOTHERAPISTS SHOULD KNOW ABOUT DISABILITY that many readers of the Halstead book will find useful and enjoyable. Do not be put off by the title: it is applicable to persons with disabilities as well as professionals.

I read this book in 1999 when I first began to have symptoms of new post-polio fatigue and weakness, having had my initial onset as a small child in 1951. I first researched to find the most respected experts in the field, of which there are now very few but more were available in 1999. Dr. Halstead was among the very best informed in the US.

The lifestyle tools and suggestions he recommends were invaluable in helping me to organize my life in a way that conserved energy, and additionally helped me not to feel guilty about dropping out non-essential tasks such as fully making my bed daily. I learned to save up my walking chits for more enjoyable activities, immediately started looking for a one story house (stairs take ten times the physical energy that a flat floor does!), re-organized my new house so that labor would be easier and not duplicated, started using my cane more often, even at home, took more naps and rests, and became more efficient about errand days. I also learned how to firmly but tactfully communicate with doctors, and immediately find other physicians if I was told, "we don't believe in post-polio in this office" or anything of that nature. These things I've mentioned are just a few highlights.

Dr. Halstead also has a very sane approach to exercise: Basically, Don't go for the burn, but don't just sit on the couch either (as one polio "expert" recommended at the time, "don't waste your energy with exercise," leading me to think, "OK, am I more afraid of a heart attack, diabetes, and back pain, or not being able to walk some day?" What a choice!).

This is a totally realistic - and kind - book about how to live your best life possible as a post-polio patient.