PPS help

[szmaupin]

At 6 months old, I was diagnosed with polio, with paralysis in right arm and left leg weakness. Docs prescribed a variety of PT and apparati such as a brace around my chest that elevated my arm. At age 3, I was St Louis' polio poster child. At age 3, I was St Louis' polio poster child. By the age of 5, I had broken my arm 5 times plus one reset. At age 8, a doctor performed an experimental muscle transplant to give me opposition of my thumb, which failed even after rehab of 3 times a week for a year. They wanted to try another muscle transplant to allow raising my arm, but I decided not to have it because I had adapted to my one-armedness, able to do most things in my own way.

For the next 30 years, I functioned normally as teacher and mother, with little deference to my disability. Then I began to have leg and rotor cuff aches, and when I heard about post polio syndrome, I thought I might have it. So I went to a neurologist who diagnosed me, telling me to"never go for the burn" when doing any activity, and that I would probably need a wheelchair in 10 years as my motor nerves could no longer rejuvenate. Other than the aching, I still lived an active life, teaching and serving as Fulbright Exchange Teacher in Senegal. After 30 years, I retired from high school teaching and moved to community colleges in my area and took care of my pre-school granddaughters.

Then I blew out my right knee (my strong leg), which swelled up and constantly ached. The PPS doc told me that a knee replacement, suggested by 4 different orthopedists over the next 10 years, would definitely need a wheelchair. A rheumatologist, recommended by the PPS doc, again sent me to another orthopedist. I declined the surgery each time, but had more PT. Nothing really helped and insurance generally wouldn't pay for more than 6 sessions,

So I opted for alternative therapies: acupuncture, massage, and the Feldenkrais Method of Movement, all of which are not covered by insurance, but have helped a little bit. With polio controlled by the vaccine in the US for almost 70 years, very few practitioners know how to help those of us with PPS.

I am now living with my daughter who takes care of me with cooking, cleaning, and companionship. I can only walk about 60 feet without resting, so outings are limited and wheelchair is used often. in April, i'll be 78.

[Lady4]

Wow. Thats sounds like you have been through a lot and yet managed to work and raise children even with the obstacles which were thrown your way from an early age, which is inspiring.

Thank you for sharing your story and offering helpful suggestions to other sufferers of PPS.