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Posted on: Tue, Jan 29 2008 10:16 AM

Posted by: vietitali Posts: 39

I'm 39 and had polio ..

I get scared hearing about PPS .. I don't know what it is and its very scary.

I get worried I won't live a long time b/c of PPS .. AND b/c I can't exercise and get that heart pumpin the way all the dr's say you should... and exercise gets you away from a lot of things like weight and blood pressure and cholesterol .. all those things

Posted on: Tue, Jan 29 2008 11:45 AM

Posted by: Walter Schmidt, VSO CPA CTM Posts: 229

Being a tetraplegic for the last half-dozen years, I knowwhat you mean. My doctors want me to get more exercise [smile]. However, what I have done -- it was a hard-fought battle over close to a decade -- is understand that my caloric intake must be drastically reduced, along with eating the things I should. Far too many of us "who are exercise challenged" [smile] never seem to win that battle. It isn't (for many of us) easy, but it is doable.

Be well...

p.s. having lost much control over my trunk muscles, for years now I get mini-panic attacks when I go to yawn and can't seem to fill my lungs. I've not yet gotten "full-control" back over the panic-attacks, but I will. Getting scared is what it is -- we could talk about my tours in Vietnam -- just realize that there are ways to deal with it [bigger smile]

Posted on: Tue, Jan 29 2008 3:46 PM

Posted by: bswoggirl Posts: 5

I am 24 years old and got polio from my oral vaccination when I was three months old. Post polio syndrome scares me a little. Luckily, in most cases it is not life threatening. The main thing to be worried about is weakening of the swallowing muscles which can lead to pneumonia.

 Sadly there are not enough studies done on post polio syndrome, simply because it is not an issue for most people. I am always wondering about the different approaches to living with PPS. The big controversy is whether to exercise the muscles as much as possible (use it or you may lose it) or to just chill and conserve the muscles you do have by working them as little as possible, just enough to keep them somewhat functioning. I really wish I had the answers. but no one really does. Most doctors still don't even know what causes PPS and why some who have had polio get it and others don't.

Anyway... it is nice that there are other people out there who can relate to what I am feeling. Sometimes I feel so alone. most people my age don't even know what polio is. Other people who have heard of it are usually like "Umm... you do know they made a vaccine for that, right?"  Ugh. "Yes, I do. That is why I HAVE polio".

Posted on: Tue, Jan 29 2008 5:08 PM

Posted by: eliek02 Posts: 2

Hey bswoggirl, I see we have something in common, I'm a 23 year old who got polio from the vaccine as well.  We should trade war stories sometime .  Anyways I don't know what to think about this PPS,  hopefully if it's ever an issue by that time there'll be serious advancements in the field of assistive limb technology like http://uk.youtube.com/watch?v=ynL8BCXih8U,  I'd gladly walk around like robocop if it meant being ambulatory without a rollator or anything.

Posted on: Wed, Jan 30 2008 5:57 PM

Posted by: vietitali Posts: 39

you guys are us citizens? born in the usa? and had polio?

WOW!!

i'm 39 and had polio but i wasn't born in the usa

in ONE hand i'm kinda jealous of you being so young b/c your'e right by the time pps is an issue they shld have advance info .. but not for me .. i'm too old for that

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gosh so all peoples get weakening of throat muscles and if u get it you get pnemonia?  ok i think i just got more scared!

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doesn't EVERYONE who got polio get pps?

Posted on: Thu, Jan 31 2008 6:22 AM

Posted by: bswoggirl Posts: 5

Not everyone who has PPS will have the weakening of the respiratory muscles, it is just the biggest area of concern.  

It is the worse case scenario from what I have been told. And if that happens, you have to watch out for pneumonia, cause you could get it easier.

Also, not everyone who has had polio will get PPS. Some do and some don't, and doctors still do not know why that is. Maybe someday someone will figure out the difference (if there is one and it is not just random) and then we can know if there is a way to prevent PPS. One website has this suggestion:

"it is recommended that polio survivors get the proper amount of sleep, maintain a well-balanced diet, avoid unhealthy habits such as smoking and overeating, and follow an exercise program prescribed by their physician."