List any Polio Survivor Groups that you belong to online or in person.
Please describe how polio has changed your life.
Now that I am older, my joints bother me a lot. I have athritis in both ankles. Have had both knees replaced. Been doing a lot of reading on PPS and am now going to get checked out to see if it is the cause of my aches and pains.
How did you find out about PolioToday.org?
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I read your note and feel some sense of kinship with you! My joints seem to be giving out one by one requiring either fusion or replacement too.. I find it to be a little scary at times. I keep waiting to see what goes next. I am also begining to feel a sense of acceptance and almost curiosity waiting to guess which joint will go out next. I think my beginning sense of acceptance started to kick in when I realized that I have no control over what my body "chooses" to do next. However, I have as much if not more control over what I think and feel about life with PPS. I can hide away and feed my depression or I can get out of this space I live in and maintain contact with my friends. Right now I am putting together a Holiday Craft Workshop for the people I live with in my Community. When I have something else to focus on, I find my pain and my frustration have less control over me. Please know that these disappointments are not "YOU". You are a person who can still think and feel and contribute to others! Good luck to you today. I care!
The weather in Aussie is still rather cool, we are about to enter our second month of spring, can't wait for summer - I hate the cold. I don't know if you have heard of Dr Richard Bruno but if interested he is on facebook, he also has a great wed site called "The Harvest Centre' web address is: www.postpolioinfo.com it's worth a look, has lots of information, been in Australia I don't know him but just reading people comments he seem a brilliant Man who is also a Polio Survivor.
Best wishes Ella
I was 5yrs when I got polio which affected my left leg leaving it with a drop foot wasted muscles, obviously skinner, weaker and shorter that my right leg. I also have Arthritis, Not sure when PPS systems started thing just happen but to have to keep going. Like you never realised that the Polio affected your whole body. WE live in a small country town so getting doctors who know about Polio especially PPS is hard, still in Australia we have a great Post Polio network and this year they held the first Australian Polio Wellness retreat- which we attended and the information there was first class. Overall a great experience.
although there is no cure for PPS, there are solutions for the pain and to help with breathing. For breathing I would suggest that you ask Glenys Swensrud on her page on the site. She has a great deal of information that helps our problems with breathing.
I use a power chair to get around as I could only walk where I could use my arms to catch myself when I fell; but my arms as well as legs were affected by polio, so I was destroying what little strength I had left in my arms as they really are not strong enough to take my weight when I fall.
I need a bilevel ventilator but the pulmonary specialist insisted that I needed a CPAP, and these are dangerous for those of us with PPS.
For arthritis look on the Community page here, wapolio is on the right hand side in the PPS support groups. There are many answers for polio related problems like arthritis. I had arthritis in my spine and pelvis for many years, I doubt if I have arthritis now.