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Old 03-13-2007, 11:26 AM   #1
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Location: Springville, AL USA
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roachbug HB User
My mother turned 64 and is having problems with polio

This is my first time logging in. I did not have polio but my mother did. She just turned 64 and has started having all sorts of problems. I believe she was around 5 when she got polio. The facts I've been told are that she was in an iron lung for a while, how long I'm not sure. I also know she had to wear leg braces for a while. Here are the symptoms she is having: memory loss, extreme pain in lower legs and feet (sometimes tingly and numb), extreme pain in her arms and hands (also sometimes tingly and numb); extreme fatigue (wants to sleep all the time). We have been to numerous doctors and has had all kinds of tests. She has had several small strokes but Doc says not strong enough for the memory loss she has. She has also be diagnosed with Neuropathy. Doc cannot come up with the cause for Neuropathy. So far no medicine is helping. Her doctor bills are out the roof. Does this sound like PPS to any of you out there. I just read this morning about PPS. I had never heard of it before. Would appreciate any responses. Thanks.

 
Old 04-11-2007, 09:33 AM   #2
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Join Date: Mar 2007
Location: Auburn, AL
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karend45 HB User
Re: My mother turned 64 and is having problems with polio

My mother has PPS. She is 67. Really started seeing the signs about 15 years ago, but only in the last couple of years has it really been pretty extreme. She is now stooped over & can only use a cane at home, so she mostly uses a walker w/ wheels & uses her electric wheelchair at home. She believes the thing that has helped keep her going is calcium. Even though she is now diagnosed osteo & taking Fosamax, she really believes that extra calcium keeps her going. She does have to take Ibuprofen daily & w/o it she could not get out of the house.

I think the important thing is view this from both way. She needs the appropriate apparatus', but needs to exercise as well. I think a combination of both will help her tolerate & the exercises will help w/ circulation & clear head.

Also, determine if her home is still accessible. My mom did get a ramp but in, but eventually the concern is going to be her bathtub. She already has an interesting way of getting in & out, but I know it won't work forever. She really needs the kind she can step in & sit down, but the bathroom is not built to accomodate. I think it's important to really look at these kinds of things ahead of time before it's too late. My mother is very difficult to deal w/, therefore, this is easier said than done. If you have a good relationship w/ your mother, please accept the inevitable & start planning for the future, whether to redesign house, move her to assisted living, or move in w/ you w/ redesigning your own house.

I do believe your mother must have done something right over the years if to only start developing PPS now. From what I've read, the average span between year that problems subsided to when PPS starts is around 40. I don't know your mother's case, but usually childhood polio left many w/ some complications in adulthood, but life was manageable. My mother had hers at 15. The diseased muscle was removed & she was able to live a fairly normal life until the residuals started around age 52.

Research is important. You need to find out as much as possible about it & see what facilities in your area can be beneficial for treatment. Haven't been able to talk my mother into treatment & she refuses to take any stronger medicine. She's a tough cookie!

I wish you the best. This is not a condition she suffers by herself. This involves your entire family. kd

 
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Old 04-13-2007, 06:48 PM   #3
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Janet W. HB User
Re: My mother turned 64 and is having problems with polio

So sorry to hear about your 'mom'- I have recently been dx'd with Post Polio- my suggestion would be do your research and find a doctor who know Polio and pps- It is still hard to find doctors that believe or practice this in their busy schedules...

Post Polio is real and not everyone that had polio will get PPS- but the only way to find out is by exclusions of other illnesses/diseases- What the polio virus has done when we had it- is damaged the neurons in the spine and or the brain... Please get her the help she needs she could just keep spending a fortune and get worse. I went to a Dr. Bruno in New Jersey, finally. He is the 'guru of polio and PPS. Get his book "The Polio Paradox"- it explains so much...

I am 51 years old and had 'Polio' in my left leg- I have been noticing more and more problems- It is not a death sentence- but we can make it so it does not progress. There is not cure but research is going on...

The Best to you and your Mom- I will say a prayer...that she gets the help she needs.

Hugs Janet (Polio Survivor)

 
Old 04-14-2007, 06:28 PM   #4
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Join Date: Apr 2007
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barber71 HB User
Re: My mother turned 64 and is having problems with polio

Your mother needs a quick revamping of her life style. Cut back to bare minimum. Getting up and dressed. Get breakfast. Is she tired? Does she have pain? Rest, rest & rest. Take a pain pill if needed. Remember, for every minute you do something you must rest twice as long for your muscles to recover.
Move everything down to a level that is easy for her to reach. Get her clothing that opens in front, no more pullovers. Too exhausting to put on & take off.
No more shoe laces, wear shoes with velcro closures. Get a something to lift the toilet seat or do as I did, get a higher toilet. So much easier to get up.
This is not giving in , this is preserving what you have left. Contact the PPS on the internet for more advice.

Last edited by barber71; 04-14-2007 at 06:29 PM.

 
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