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Post Polio Syndrome

Brain & Nervous System | Last Active: Jun 16, 2023 | Replies (20)

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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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Replies to "Hi K76, I can understand your pain. I too have serious osteoporosis along with rheum/arth compounding..."

Forgot to mention FWIW. I had a hard time coming to terms with myself in a wheelchair as it has been a lifelong ambition not to have to give in to one. There are numerous "psychology type" articles in the Post Polio newsletters on why it is wise to have one and how to get over the milestone of accepting you need one. Anyone facing this prospect would gain confidence in it being the right decision by reading the experiences of others who had to accept it.