by Jean Devenport, Melbourne Beach, Florida
Like many of you living with muscular dystrophy, I long knew something was wrong, but I was not sure what it was.
Most of my adult life, I was focused on my severe scoliosis, but in 2004 I was diagnosed with FSHD by a neurologist who did nerve conduction tests and other assessments. I remember him saying I would probably end up with a brace on my right leg. He left me with the words, “this is not a pretty picture.” Ha.
My first hip replacement surgery was in 2011. Five hip surgeries and one knee replacement later, I can still walk (thank you Jesus). I worked until I was 70. I have lost six inches of height. My right side is my weakest side.
My dad had muscular dystrophy, and his weak lungs took him to his heavenly home when he was 76. He wore braces on both legs for several years and lived to be 76.
Having been active in sports for most of my adult life, I was not aware of any muscle weakness until I was in my 60’s. My shoulders and back were the first to weaken. I walk with the help of a walker 24/7 now, at the age of 75. Unlike multiple sclerosis, there is no remission with FSHD.
Those of you have written articles in the FSHD Advocate have helped me. In writing this story, I want to give back by sharing my experience, and lending strength and hope as well. My family and friends have all pitched in when needed. My faith brings me through my difficulties, and I still have joy in my life. Hopefully research can find a way of slowing down the progression or miraculously finding a cure.
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