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From a 70 Year Old JP w/Polio

12-03-2010

If you have Post polio Syndrome, be very careful with your doctors. I was diagnosed in 1987. The neurologist was very knowledgeable. Then came a period of 20 years when every doctor I saw simply blew smoke. They took my lead and I was an idiot and paid their fees. I told them and they said, "uh Huh. Of course." When I became patient at the University of Texas Medical Branch in Galveston, the first two neurologists eagerly told me that they were ignorant. The doctor who did the electromyography knew everything. The neurolgist I saw last knew nothing and said so. That's okay, I know a lot. PS: I no longer say, "I HAD polio in 1951". I say, "I HAVE polio." The neuropathy and atrophy are evidence that this is never going away. So, From JP,
grill your doctors. Make sure that they know something before taking their advice.

Showing comment 1 to 15 from a total of 5 comments
12-24-2010

I had polio at 13mos old. I am 57 and having trouble with my knee and ankle. I went to a doctor thinking he could help me.After seeing him I cried all the way home.
He said that I was going to get worse and I will be in a wheel chair. He said he has a fried that had Polio and he is in a wheel chair to. Am trying to fined a doctor who knows what I am talking about.

08-02-2011

A brace may help. If your ankle problem is causing your foot to droop, an ankle brace might be just the thing. Maybe using a cane would help take some of the stress off your knee.
ALao, don't keep trying to do everything you used to do. I wish I could find a knowledgeable doctor....we just have to educate ourselve

08-22-2011

I agree a brace could be a tremendous help. Braces have come a long way since I was a kid. Find a good Prosthetist/Orthotist who could custom make a brace for you. It is likely you will need a perscription from your physicians and the prosthetist can give him/her the info they need to write one up. Believe me, it would be well worth you time and relieve further deteriation and pain.

02-18-2011

hello
I had polio in the 50s and im now suffering badly some days and just suffering the others,doctors just do not seem too see you never mind help,This late effects of polio is very disabling cant seem to do or go anywhere without worrying about how far ,can I make it,why do we all try to pretend its not there,prob because thats the way people treat us(just put up with it)dont talk about it ,its over ,it cant be that.

05-06-2012

I too caught polio in 1953. I am now 59. I am learning to cope as best I can. I do indeed realize I will be in a powerchair within 6 months. I feel my legs getting weaker day by day, what I could do last week is very hard this week. I can no longer walk to my workshop, and barely able to get to the house. Thus I park very close to the house, and drive up to my shop. In the meantime, I will continue to build my ramps to my shop & home to get ready. Folks, doctors don't know the hell about what we are going through. Take proactive steps to help yourselves. Get the grab rails installed in the shower now, and any place you routinely occupy. Get rid of those stinkin throw rugs. Get yourself a 2 wheeled wire basket cart, throw your laundry into that, much easier. Swallow your pride & ask for help when you need it. Your wife/husband will be more than happy to help. I also use my debit card to get gas at the pump, as I cannot walk in safely to pay. Again, swallow your pride, AND USE THOSE ELECTRIC SCOOTERS at the stores. Their free to use, that's why they are provided. My last thoughts are: The doctors can't help us, there is no cure. We are on our own. Just take the steps you need to survive, as best you can. It also helps to know that you have help for the final step, Jesus. He will be there, when you need Him in the final hour.

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