Power Wheelchair, Adjustable bed, bath bench and elavated toilet seat
Please describe how polio has changed your life.
I was 18 months old when I got Polio and was paralyzed from my neck down. Gradually, I started getting some return of strength in mixed areas. I spend most of my childhood in and out of Shriner's Hospital in SLC with the hope of getting me to a point where I could walk. In all I had 18 or 19 orthopedic surgeries (between the ages of 2 through 16) to help accomplish that goal. I eventually was able to walk a little with long leg braces for a short period of time (approx. 2 or 3 years tops at intervals), but kept falling because of a dislocating right hip. There was not enough muscle left to hold the hip in its socket. At that point (at approx. age 7) it was decided that a hip fusion was necessary. Unfortunately, the fusion never properly fused and trying to walk was extremely painful and I was so sick of hospitals, pain that I rebelled at age 9 and quit going in for additional surgery, much to my mother's dismay and disgust. My father supported my feelings and wishes. I still feel to this day that I let everyone down (including myself) by my lack of perseverance. Eventually, by age 15, I, myself, had matured enough to try hard and give walking one last attempt. Looking back all these years later, I realize that even at that point, what I was trying to do was appease my mother and some other family members hopes and dreams for me. So at that point, the doctors at Shriners approved me for a series of about 8 operations scheduled about 6 to 8 weeks apart. They did succeed in once again getting me up on my feet, but all it really did was enable me to do a sort of form of exercise, but never really a form of functional mobility. I still needed the wheelchair for that. Eventually, by the time I was about 20 years of age, I came close to falling again too many times and the hip pain was increasing. I saw the orthopedic surgeon who originally did the hip surgery (plus many others) and he told me to quit my standing and stop any attempt at walking (actually dragging one leg and then the other) because the fusion was broken. He offered to redo the fusion, but I chose to live with it and still am doing so to this day. This has been an extremely hard, painful, and difficult life and it isn't getting any easier. Things I could do thirty years ago (or even five or ten years ago) are so much harder or even impossible to do now.
How did you find out about PolioToday.org?
The internet plus I read Dr. Bruno's wonderful book