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From: ShonaO2/17/17 11:35 PM 
To: All  (1 of 2) 
 1522.1 
I am new to this and I hope I have found the right place to vent. I contracted Polio in 1954 when I was 2. I was in Australia at the time. I now live in New Zealand. I was a teacher until 4 years ago and now I tutor children. I got polio in my left leg and I got rid of my caliper when I was ten through a series of operations. I have been reasonably mobile but had to start using a walking stick at 40. I am now 64 and over the last 6 months I have had more and more difficulty getting around. Walking now is difficult and I have to spend a lot of my day on my bottom. I do a little, sit a little. I feel like my mobility is slipping away. My doctor does not really believe in post polio so I cannot go to him for advice. I have not found anyone who is more enlightened. I am starting for the first time in my life to feel frustrated with my polio. I am just not sure what is the next step. I cannot really afford to stop work and become an 'invalid' even if I wanted to.
Shona
 
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From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host2/18/17 11:02 PM 
To: ShonaO  (2 of 2) 
 1522.2 in reply to 1522.1 

Welcome!! As you may have noticed, this Forum has become very quiet as everyone seems to have migrated to Facebook. I keep this open because I don't want anyone getting lost on the Internet. I've known how you feel--even though I worked in a Medical Center with a large Rehab Department here in Pennsylvania, USA. What got in my way was mostly myself, although medical ignorance (most docs todays think Polio is extinct) is still rampant, as you will learn. I went to an all day Conference in my 30's (I was already suffering fatigue and arthritic changes)--this was in the 1980's. It was offered to both Professionals and Survivors, and since I was both, I went. Part of the program was a private assessment by the Director of the program, who also was a Survivor. After getting my history and carefully listening to my current problems and my level of activity (I was a Social Worker in a very large City Hospital and spent 70-80% of my time on my feet). The first thing he recommended was that I get a power chair (not a scooter--I only had one functional shoulder) to use, at least, at work. While he was explaining how this would extend the functional life of my muscles (we weren't quite clear on the cause of PPS yet) I was having total hysterics. Once he got me to stop crying -he saw a lot of it- we parted and I promptly ignored his device. I finally got a chair in 2000 and used it, only at work, for the two years I was able to keep working. I often wonder how much longer that might have been if I had listened to that wise man.

Anyhow, the first link I have for you is to Polio Health International's 2017 Directory of world wide Doctors, Clinics, other Professionals and support Groups. There are 2 listings under you country, both Support Groups Frankly with no Clinics or Docs there should be a lot more! Anyway, Support groups are great for finding Docs who will at least know what you are talking about (there have to be some, right?). Also, just talking to someone else who really knows why you need to vent and will listen, and share, is amazing. Even on line, which is where I first found a place--the original founder of this Forum, Dave, had started it on a talk site I can't remember the name of (mid-90's). They were the ones who helped me to go to the head of what was left of our Rehab department, who was also my boss at the time, and ask to be his patient. He did more for me that just about all of the Doctors I'd ever been to. When I finally asked him about a chair he broke into a huge grin and said "Finally! I knew the first time I saw you, long before you started working in Rehab, that you needed wheels, but I also knew that, even after you became my patient, I could lose your trust unless I waited for you to ask." I lost him as my Doc a year later when he had a massive stroke at age 59--he survived, but never practiced again--had to leave his wife and 12 year old son to live with his brother's family across the state because he couldn't manage alone. Right now it's taking 4 very good doctors to be 80% as helpful as he was, bless his heart. I'm wandering, I know, it's after 10 PM here and I do that. The link is: http://www.post-polio.org/net/PDIR.pdf . The Forum on Facebook I've found most helpful is the Post-Polio "Coffee House" https://www.facebook.com/groups/PostPolioCoffeeHouse/ . Its a closed group, you either have to request membership or be referred by a member. This is to protect our privacy and screen out some freaky types out there. It's run by Dr. Richard Bruno, who wrote the "Polio Paradox" (Which you must read--it's cheap on Amazon. Kindle has it too). He's treated Polio Survivors for a long time and he's one of us. Also take a look at his current web site at http://www.postpolioinfo.com/index.php . Read his Bio--You'll get why the Website seems to be a combination of several sites--because it is, as made obvious in the greatest mix of American and English spelling you'll ever see.

Anyhow, I hope some of this is useful. I'm here every day (I belong to two forums that have stuck it out), so feel free to read the posts and ask questions, or vent, although I have to say being validated by a whole bunch of supportive people who really "get" you is amazing! BTW, there are other Polio groups on Facebook you should check out, I've just found this one meets my needs. The Open groups do more social stuff--birthdays, cat pictures (which did tempt me) The Coffee House, while funny at times, still sticks to it's main purpose.

 

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