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What is PPS? How Did I get it?

15 Aug

My first "serious" wheelchair...a long time ago

In order to have Post Polio Syndrome, first of all you need to have had Polio.  I contracted Polio in 1952 when I was 2 1/2 years old.  The actual sickness phase of the disease only lasted a couple of weeks.  I had a very serious case of Polio. Part of that time I was in a coma.  When I came out of the coma, I was virtually a quadriplegic, unable to move anything but my head but able to breathe and swallow. The Doctors gave my parents zero hope of any improvement.  My Mother and Father did not take that for a final answer and began to take me from Doctor to Doctor….carrying me on a board because I was like a rag doll.  An Orthopedic Physician in Charleston suggested that they could try something new called Physical Therapy.  In fact, there was a German lady right in Charleston who had just opened a clinic.  So my parents made an appointment with her.  She started me out with simple exercises.  My parents would take me to Charleston every week and she would add new exercises, which my parents did at home with me 3 times a day.  This went on for several years.  Gradually I was able to hold my head up, sit up, crawl and stand.  I didn’t walk again until I was nearly 5 years old.

I regained strength slowly and was able to “pass” as a normal healthy child, although my ability to keep up with other kids my age was apparent.  I excelled academically.  I only wore a back brace to correct a scoliosis for a few years.  I was not using leg braces, crutches or a wheelchair, nor did I ever have the need of an Iron Lung as some Polio victims did.  I lived a pretty normal life, going to school and dating and eventually marrying when I was 19.  It was then that I was told that I should not get pregnant because my body was not strong enough to carry a child to term.
Flash forward to about 1976.  I had finished school and working for my husband who was an Optometrist.  I had become an Optometric Assistant while he was in school and was working part-time in his office.  I began to fall again, mostly at dances, when my “Polio leg”, which was weaker and under developed, would “give out” on me.  This started happening more and more.  I became tired from doing the simplest of things…I couldn’t clean my house or lift my newly adopted baby boy who was 10 1/2 months old. 
 As time went by, the list of things that I could not do got longer and longer….I was living in San Bernardino in 1986 (new husband) and I complained to my Allergist that I was short of breath and so tired from just walking from my car into his office.  He did tests and found out that my Diaphragm was atrophying.  He knew of my history of Polio and suggested that I get evaluated immediately by a neurologist.  The Neurologist did a through examination, including EMG,  ruling out such things as ALS, MS, and other horrible diseases.  He explained Post Polio Syndrome to me. I had Post Polio Muscle Atrophy in every muscle group that he tested! It was not just my breathing muscles, but also both legs (I thought my “non-Polio” leg was healthy), my arms and all muscles that hold me upright in a sitting position…even my hands were affected!  There is no way to re-generate nerves that die from over-use.
He told me that after original Polio that PT was necessary to get me walking again…BUT over the years, my nerves that control ALL of my skeletal muscles and diaphragm were slowly loosing their ability to innervate the muscles.  This was from over-use.  Doctors and Physical Therapists had it all wrong when they encouraged us to exercise, exercise, exercise to get and stay stronger.  What was actually happening was that we were “wearing out” our nerves with so much exercise (with me it was golf, dancing and running after a toddler)  and now with Post Polio Syndrome we had to conserve what we had left….Conserve to Preserve…that this PPS was a degenerative disease process but we could slow it down if we slowed our lives down and stopped doing the very things that we had been told were good for us….I was relieved that what I had been experiencing…the horrible pain and fatigue…had a real cause…and a NAME! …..Then the reality of living with Post Polio Syndrome began to became clear to me and my husband. The PPS nightmare had begun……