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rsb (@rsb)

Post Polio Syndrome

Brain & Nervous System | Last Active: Jul 21 5:59am | Replies (12)

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@polio

I am experiencing all the side effects of post-polio syndrome & I'm looking for a Neurologist in the Phila.,/ S. NJ area to find a way to help me walk better without pain in my upper thigh & back. Because I'm 71, most neurologists don't have a lot of knowledge how to help me.
Anyone able to recommend a Dr.?
Thanks.
JW

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Replies to "I am experiencing all the side effects of post-polio syndrome & I'm looking for a Neurologist..."

Hello @polio, Welcome to Connect. I have no experience with post polio syndrome but I'm wondering if you are familiar or have seen the Polio Place website. It has a list of post-polio clinic directors, health professionals with post-polio expertise, and post-polio support groups along with other resources you might find helpful. It has an online version of the directory that is free or you order a printed version for a fee.

Post-Polio Directory: https://www.polioplace.org/post-polio-directory

Here are some additional resources that are available if you have not already seen them.
— Exercise and Post Polio Syndrome: https://www.neuropt.org/docs/degenerative-diseases-sig/ddsig-fact-sheet-exercise-and-post-polio-syndrome.pdf
— Post-Polio Syndrome Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Post-Polio-Syndrome-Fact-Sheet

Have you looked into getting physical therapy to see if it would help?

If you can't find one in your area, Dr. Subrarmanian at Hershey Medical Center in Hershey is on the list for post polio consultations. I have had to wait 5 months to see him having gotten a referral from my neurologist. You would have to get a referral to him. The contact is Penn State Neuroscience Institute 717-531-3828. I was 10 months old when I had complete paralysis except I could move my eyes. PT does not seem to help, I do take water exercise twice a week in deep water and had been a good lap swimmer for years plus yoga until hip replacements and broken wrists precluded continuing. I have been through multiple attempts to get a brace for my left leg with nothing satisfactory. My left foot is in collapse and the orthopedist said "you would not like me very much if I operated on that foot". I understand the recovery period is extensive with no assurance of success. I will take my chances at age 73.

I think you have to know your body and find a good physiatrist if you can locate one and persist in getting answers. That may be ideal in the absence of locating a post polio specialist. They are very rare.