Post Polio Syndrome

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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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.

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I did attempt to find a doctor at the Mayo Clinic who would evaluate my tremors as it relates to my having polio when I was almost 2 years old. I was trying to also find a specialist who would make a statement that says that my exposure to Agent Orange while I served in Vietnam is not necessarily certain, but more than likely the cause of my tremors plus that this could well be post polio syndrome. I ache every day, my tremors are every day, if I hold a plate in my hand trying to serve myself at a buffet, my entire arm shakes, it LOOKS like Parkinson's yet I can't find anyone willing to diagnose me. I am now almost 69. In my phone conversation with someone at the Mayo (phone appointment) the lady told me that the Mayo could not make any such appointment for me. I was so disappointed. I just wanted a diagnosis of the overall picture relative to tremor/fatigue/post-polio/dioxin/anxiety and even my lack of testosterone. I feel like a mess. I really don't know where to turn, especially when the Mayo turns me down, they are only 90 minutes away from me 🙁

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I am empathetic as I too have tremors probably caused from the PPS I am recently experiencing. I suddenly cannot stand, walk and am living in bed with diapers. Has anyone found relief?
Swimming helped long ago but I haven't access to a pool.

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I was diagnosed with post polio 35 years ago, though I originally got polio when I was13 months old... couldn't move anything but my neck & head...was in the hospital for a long time, and gradually got better with therapy and it just affected. my right leg, which was shorter, smaller and weaker & was 3 sizes smaller than my left leg, so I had surgery at age 12 and didn't have to wear a brace anymore! After awhile I could make do in the same size shoes! As a teenager I was doing great, felt great and did all the things a normal teenager would do...(had a job) I grew up, got married, had a daughter...everything was fine. Then when I turned 42 I started feeling so tired all the time, terrible back pain...weakness and was no longer able to stand on my feet all day and eventually wasn't able to work & that is when I was diagnosed. It is a rough thing to deal with, physically & emotionally. Physical therapy doesn't help me... as over the past 20 years I have fallen so many times..and broken that right leg 14 times, the last one was my femur, so I now have to walk with a cane. My orthopedic doctor said I have the worse bones he has ever seen. I've had 2 total joint replacements (left hip & shoulder) which the shoulder wasn't done correctly and the "ball" isn't in the socket, so I can't raise my arm but a little..can't put my food or dishes in the cabinets or wash my hair unless I hold my head down towards the bottom of the tub, but dr said my bones are not healthy.enough to do it over. Anyway, thanks for letting me (vent) & hope you are well!🙏🙏🙏

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Welcome @k76, Nothing wrong with venting and you are definitely not alone. I'm happy to see that you found this discussion. I'm sure that @tarmansbks, @bruce0712 and others can relate to how you feel.

Thought I would share the following website in case you haven't seen it before:
--- Post-Polio Health International: https://post-polio.org/

Have you done any research on Post Polio?

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I was diagnosed with post polio 35 years ago, though I originally got polio when I was13 months old... couldn't move anything but my neck & head...was in the hospital for a long time, and gradually got better with therapy and it just affected. my right leg, which was shorter, smaller and weaker & was 3 sizes smaller than my left leg, so I had surgery at age 12 and didn't have to wear a brace anymore! After awhile I could make do in the same size shoes! As a teenager I was doing great, felt great and did all the things a normal teenager would do...(had a job) I grew up, got married, had a daughter...everything was fine. Then when I turned 42 I started feeling so tired all the time, terrible back pain...weakness and was no longer able to stand on my feet all day and eventually wasn't able to work & that is when I was diagnosed. It is a rough thing to deal with, physically & emotionally. Physical therapy doesn't help me... as over the past 20 years I have fallen so many times..and broken that right leg 14 times, the last one was my femur, so I now have to walk with a cane. My orthopedic doctor said I have the worse bones he has ever seen. I've had 2 total joint replacements (left hip & shoulder) which the shoulder wasn't done correctly and the "ball" isn't in the socket, so I can't raise my arm but a little..can't put my food or dishes in the cabinets or wash my hair unless I hold my head down towards the bottom of the tub, but dr said my bones are not healthy.enough to do it over. Anyway, thanks for letting me (vent) & hope you are well!🙏🙏🙏

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Hi K76, I can understand your pain. I too have serious osteoporosis along with rheum/arth compounding an already weakened body. I was totally paralyzed with polio when I was not quite 10 months old. My mom went to nurses' training at Bryn Mawr Hospital and didn't want to send me to the Elizabethtown Crippled Childrens Hospital so she did the Sister Kenny method that she was taught how to do by someone from the National Foundation (pre March of Dimes). I can still smell a hot wet towel or flannel and it turns me because despite my age, I can go back to the days when she was working on me on a table in our basement. It was a painful process. I was in full braces a long time but got along and the last was a night brace I hated and worked my way out of by morning. Fortunately I didn't have the lung problems our poor stricken brethren experienced. Made my way through life, achilles tendon lengthening summer of my 10 year, both hips replaced, lumbar laminectomy etc. Knee on my weak left leg should be replaced but no one will do it because of feeble quads so I hobble along and finally succumbed to getting a motorized wheelchair so I can participate in more activities at my CCRC. I hate feeling weak and feeble because my mind is very active even if the body isn't. Most people for a long time would not have understood my disability. I likened it to termite damage, outside looks ok but lots of problems underneath the surface.

Having carpal tunnel surgery in a week and waited too long as left arm affected and weakened. Other side needs the same but we will see how it goes. My legs spasm at night and I am trying another med for it - baclofen which helps a bit so far and may need a dosage increase but the dreams are very vivid with this drug.

I can assure you the value of Bruno bytes on the polio network is very reassuring and comforting to learn how others cope. You know we have come a long way since our childhood epidemic experience and I guess we understand how to modify and endure. I was much helped by my husband but being widowed the second month of covid due to his cancer was a real setback and I think the combined stress hastened the post polio weakness. My swimming pool was unavailable then and now it is too complicated to return and I mind very much getting chilled as I don't get over that even with a warm shower.

Sorry this is long but I hope all of us who have the polio syndrome just keep putting one step ahead of the next whether you are on a motorchair, cane, or walker. Just do your best.

Hugs to all. M.E.

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