After an active life that included scuba diving and tracking rhinoceros, Carol Stoveken is learning how to live a full life within the limits of Post Polio Syndrome.
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It took about a decade for me to finally put the PPS puzzle together. Back in 2000, I had a dentist who had to cap my two front teeth because of yellow bands of discoloration. She said these were from being given massive doses of antibiotics when I was about 3. She asked me if I remembered any major illness at that age and also asked me if perhaps I’d had polio. She was quite familiar with the disease.

That got me to thinking. I had some odd memories of being kept in a dark room, unable to walk. I remembered that I was about 3. These are my first memories! After my conversation with my dentist, I asked my mom about it … but all she told me is I had some kind of problem for a short while where I couldn’t walk. No big deal. Never in my home was the “P” word mentioned.

I obviously recovered from the polio and lived a normal, active life until I turned about 50. My only problems were a slightly off-balance gait. But after 50 I began to slow down and experience increasing pain. After swimming five miles a week for over 20 years, I had to stop. I didn’t think much of it, just figured I was wearing out certain muscles and joints and it was time to scale back. I figured I had arthritis.

But over the next five years there was more joint and muscle pain, fatigue and some degeneration in the muscles in my right leg, which is the one that doesn’t work so well. I did a lot of research on the Internet and the whole polio thing kept coming up. Then I found out about PPS. I was pretty freaked out and wanted to go back to thinking I had an injury that would heal in time – not that a bunch of neurons that were dying off!

I am so grateful to have found PolioToday.org. I will do anything I can to help get the word out. I have no doubt that too many of us are either unaware, misdiagnosed or have mistreated when we get to the truth.

More research needs to be done. More doctors need to become aware of PPS. It seems to me it’s like Fibromyalgia was in the ’90s. No one ever heard of it and those people who said they had it were too often treated like they were slightly crazy.

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See More Expert Opinion Videos>> ]]> http://poliotoday.org/?feed=rss2&p=350 0 http://poliotoday.org/?p=560 http://poliotoday.org/?p=560#comments Tue, 15 Dec 2009 22:55:30 +0000 admin http://poliotoday.org/?p=560 Polio Network - Victoria, Austalia [watch the video]]]>

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See More Expert Opinion Videos>> ]]> http://poliotoday.org/?feed=rss2&p=552 0 http://poliotoday.org/?p=543 http://poliotoday.org/?p=543#comments Fri, 11 Dec 2009 20:21:41 +0000 admin http://poliotoday.org/?p=543 My name is Cilla Webster and I am a South African polio survivor living with PPS. I got bulbar polio in 1952 and was rushed to Wentworth Hospital in Durban and placed in the iron lung. The first orthopedic surgeon who operated on me said the operation was a failure because of the nature of my disability and that I was a hopeless case.

I remained a “hopeless case” until meeting Dr. Fred Hedden, an orthopedic surgeon who’d been to the USA and studied both the Grice operation and Hammington Rods. I had the Grice operation in 1958 and lived a very successful life for more than 20 years.

Fortunately I’d been trained in the secretarial field so I was always employed and provided for myself. All that changed in 1982 when my health became impossible to cope with. In 1997 Dr. Hedden diagnosed me with PPS and referred me to a neurologist. This started me on the road to discovery.

I had been incorrectly diagnosed for many years with a variety of bizarre diseases and also discovering that there were few neurologists with a basic knowledge of PPS, if they had any. The ignorance and lack of interest in PPS resulted in me starting the Post-Polio Network RSA (originally The Post-Polio Syndrome Support Group) in 1997. The network assists all African countries with support and information and receives queries from the Muslim countries as well.

We do not receive any funds and are unable to meet as a support group as the crime in South Africa is too bad and people fear going out at night, however, I am available 24-hours a day to assist others. Our web site is http://www.postpolio.co.za, where you can also download our latest newsletter if you do not have it e-mailed to you.

There are many problems in South Africa because of the lack of interest in PPS by the medical field. Pulmonologists refuse to believe that the diaphragm muscles can be affected by the initial polio. They have no reasonable explanation for why they think the poliovirus has bypassed the diaphragm, but refuse to entertain the subject.

Neurologists are just too busy to be bothered and if they do have a basic knowledge of PPS then they’re not interested in learning any more than what they know. It leaves us all with very limited access to medical and physical needs, this includes motorized wheelchairs for those of us with paralyzed legs, short arms and/or diaphragm problems.

I have been housebound on my bed since the 7 September 2009 when my motorized wheelchair motor blew up. Since then I have constantly attempted to have it replaced by medical aid but have not been successful so far. We have the same twenty-four hours as everyone else and what we make of it is up to us. I choose to be proactive and make the most of what life has given me.

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