Post-Polio Health (ISSN 1066-5331)
Vol. 17, No. 3, Summer 2001
Read selected articles from this issue ...
Eradication of Acute Poliomyelitis in Sight
Timothy E. Wirth, President, United Nations Foundation
Joan L. Headley, Executive Director, GINI
Selecting a Physician
Sunny Roller, MA, Ann Arbor, Michigan, and Frederick M. Maynard, MD, Marquette, Michigan
2001 Calendar of Post-Polio Meetings
For Your Information
Joan L. Headley, Executive Director, GINI (now PHI)
As a faithful reader of Polio Network News, you will recall the May 2000 "International Conference on Post-Polio Syndrome: Identifying Best Practices in Diagnosis & Care," sponsored by the March of Dimes, held at Warm Springs, Georgia. Two reports – one for physicians and one for people who had polio – were published and included with your Rehabilitation Gazette mailed in July.
The value of "Post-Polio Syndrome: Identifying Best Practices in Diagnosis & Care" and "Guidelines for people who had polio" for me is that they represent a peer-reviewed consensus of opinion from researchers and clinicians. They clarified the definition of post-polio syndrome. I think we all should keep this in mind the next time a neurologist tells us we "don't have it." No one is saying there are not consequences to having had polio earlier in life, i.e., the late effects of polio. The reports are saying that post-polio syndrome is a specific, new neurologic condition.
My satisfaction with assisting in distributing the reports was tempered by some of the press coverage. I reminded one journalist that, "The use of the word 'victim' is outdated, and the image that it presents to non-disabled people, or reinforces in polio people, can be damaging."
Guidelines do exist to assist journalists when writing about disability (www.accessiblesociety.org). The Research and Training Center on Independent Living in Kansas is updating their pamphlet about language. I will let you know when it is available.
However, I was most frustrated at the bleak message the media presented about post-polio syndrome – physicians do not know about the condition and there is nothing that can be done. So where does that leave polio survivors who read these columns? I expressed my concern with a Letter to the Editor. "To say that the symptoms of post-polio syndrome include weakness, pain and fatigue, the symptoms of many diseases, and then say there is no cure but rest, or canes and wheelchairs (devices many would rather avoid), might cause polio survivors who read the article to 'treat' themselves and not go to a physician. While 'conserve it to preserve it' is a catchy phrase, it minimizes the seriousness of the problem for some polio survivors, and it ignores the complexity of the problems those survivors present to the medical community." "Conserve it to preserve it" offers some general guidance, but many times the advice is just that – general, and survivors are not offered specific options or encouragement.
I encourage each of you to visit a primary care physician regularly to receive a physical and to have the routine screenings appropriate for your age and sex. Insist that your physician is diligent about finding and treating what can be treated and insist that you are referred to knowledgeable specialists when symptoms persist. This probably sounds familiar, but one polio survivor with "overwhelming fatigue" was finally and correctly diagnosed with cancer.
Several of you have asked how you can help in distributing the March of Dimes' reports to physicians. One possibility is to contact the medical society in your state or county and ask if we can send copies for an upcoming meeting and/or if we can put a notice in their newsletter or on their website. Be sure to offer a sample copy. The reports will not make a physician an expert, but will alert them as to what to look for and guide them in making referrals.
In July, syndicated columnist Dr. Paul Donohue wrote about post-polio syndrome. Donohue mentioned the importance of maintaining muscle strength, but not exercising to exhaustion. He implied that IPN could send a ready-made set of exercises. We, of course, cannot due to what many refer to as the "exercise controversy." I am not so sure it is controversial as much as it is individual. Exercise for you is different than it is for me. Some of us have overuse weakness; some of us have disuse weakness; some of us have both.
So, what is the exercise solution? Read and review all of the credible information you can. Past issues of Polio Network News have contained articles by James Agre, MD, PhD (Vol. 15, No. 2), and Gunnar Grimby, MD (Vol. 16, No. 1), which review the research regarding exercise. Drs. Perry (Vol. 16, No. 4) and Yarnell (Vol. 14, No. 2) have offered general guidelines.
This issue of Polio Network News includes a description of four management/wellness programs designed for polio survivors (Post-Polio Resources) and each program addresses exercise. We have included contact information where you can get specifics.
In addition to educating yourself, find a health professional who will work with you (Selecting a Physician) and assist you in establishing an individually designed program. If you have an established exercise program that works, I am requesting that you describe it and send it to me for possible publication. Let's help each other to think creatively by sharing what has worked for us. Be sure to include a description of how you were originally affected by polio.
[NOTE: Read A Statement about Exercise for Polio Survivors in Vol. 19, No. 2}
Post-polio has received a lot of press lately, and we generally applaud the publicity. However, a letter from Jack in New Jersey demonstrates the consequences of being diagnosed with post-polio syndrome. "I have been denied long-term medical care insurance because I have post-polio syndrome. Several physicians have said they see no reason that I would be more apt to require extreme or protracted care than anyone else. So I am left worrying if the insurance companies know something we don't, and wondering if there is any reasonable alternative."
More and more survivors are reporting that post-polio syndrome is on the list of conditions that prevents one from obtaining long-term care insurance. I asked FamilyCare America – a group who wrote an article entitled "Who Needs Long-Term Care Insurance?" – about our options. They are researching it. It cannot be just a polio problem; other conditions must also be disqualified. So, I asked the American Association of Disabled People (AAPD) the same question. I will let you know the answers. I know many polio survivors are relieved at getting a diagnosis of post-polio syndrome, but there are disadvantages to having it. To me, this is why clarifying the definition of post-polio syndrome is important; the ultimate definition has serious ramifications.