Post-Polio Health (ISSN 1066-5331)
Vol. 17, No. 1, Winter 2001
Post-Polio Clinics: Philosophy and Design
Jessie K.M. Easton, MD, South Dakota; Wendy Malisani, West Park Health Care Centre, Toronto, Ontario, Canada; Anne C. Gawne, MD, Roosevelt Warm Springs Institute for Rehabilitation, Warm Springs, Georgia
Footwear for Polio Survivors
Dennis J. Janisse, C.Ped., National Pedorthic Services, Inc. Milwaukee, Wisconsin
Joan L. Headley, Executive Director, GINI (now PHI)
International Polio Network has published the Post-Polio Directory since 1985. Every year when we update the information, I pause and think about the benefits it provides – a listing of self-identified clinics, health professionals and support groups in the USA, and a listing of international post-polio organizations. Although, it is "a good place to start," the down side of the Directory is that these entries are not screened.
What qualifies a facility to be designated as a post-polio clinic? We discussed this problem at our Eighth International Post-Polio and Independent Living Conference in June 2000. To better assist individuals in selecting a clinic, we have asked the clinic directors to complete a survey, and we will add that information to the print and online Post-Polio Directory-2001©. The new edition will be available (and sent if you ordered one) after March 1, 2001.
The existence of the Directory precipitates another discussion. How important is it that a polio survivor be seen by a post-polio specialist? As with many questions, the answer is, "It depends." Do you have regular physical examinations? If not, why? If you do, how is your health? Does your primary care physician refer you to a specialist when symptoms continue? Does he or she take your medical concerns related to polio seriously, but not blame everything on polio? Or, does your physician discount or minimize medical problems that you consider to be serious? If you are experiencing unsolved health problems, you may benefit from consulting an expert who understands polio and its late effects and who offers solutions. The latter is important. Getting a diagnosis may put a name on how you feel, but it is important that a facility offer solutions and guidance. I want to be realistic here: there is no miracle cure or any proven medication that can slow the aging of our motor neurons, but clinics certainly can intervene with treatment options to assist us in maintaining our health and can find and treat other causes for our symptoms.
I am passing along a request from historian Naomi Rogers (Dirt and Disease: Polio before FDR), who is writing a book about Sister Kenny's work in America. If you are a former patient or colleague and are willing to share your memories and experiences of Kenny's work, please contact Rogers at Director of Undergraduate Studies, Women's and Gender Studies Program, Yale University, 100 Wall Street, 316 WLH, New Haven, CT 06520-8319 or firstname.lastname@example.org. After my last request to you to assist a researcher, a long-time reader emailed to say he would not oblige this time; his experience has been that promises of follow-up information and final reports are not fulfilled. He has a good point and I am passing it along.
Several polio survivors, who use ventilators and have lived in their own homes all these years, are now searching for a retirement facility that will truly "facilitate" their needs. We must compile a list. Please help us by forwarding the names of suitable places.
IPN continues to receive letters of thanks for our work, and we appreciate the encouragement they provide. Many of you were able to respond to our end-of-the-year call for donations to assist with operational expenses. Again, we thank you.