I suppose deep down I knew it was the truth. At the time I
didn't know there were different types of muscular dystrophy and only knew
what I had seen on the MDA Labor Day Telethon. In 1986, my family went to the
University of Southern California Neuromuscular Center. I had various
tests and a muscle biopsy. The results showed I have a type of MD called
FSH. At that time the doctor recommended that I wear leg braces but that
wasn't even up for discussion as far as I was concerned. It was an issue of
vanity. I was walking with some difficulty and couldn't raise my arms to
shoulder level but was compensating fairly well. I was devastated.
My weakness has progressed to the point that walking can be both painful and difficult, not to mention dangerous. I have had more falls than I can possibly recall. When I go out it is a constant challenge with insufficient accessibility in malls, shops, restraunts, etc. I can not step up a curb, open a door by myself when I use my scooter, use a
public bathroom because the toilets are too low, and a million other things that
most people take for granted. I wear braces on both legs to keep me from
falling on my face but it no longer bothers me except for the fact I can't wear nice shoes. (I told my kids when I die to make sure I'm buried in high heels!) It is very difficult to live with a progressive disease. With each setback
comes the need to find a new level of acceptance. It is a continuous struggle.
One day in the very near future I will be in a wheelchair on a full time basis. I always use a chair when I go out and more and more inside as well. I
have chronic fatigue and muscle pain. Because of the way I compensate in doing everyday tasks I also have damage to my joints and some arthritis. I am unable to work so it has also
affected my financial stability.
Fortunately, at this time neither of my children show any symptoms of having
FSH but no one knows what the future may hold. They each have a 50/50
chance of having it. Their children may also have
a 50/50 chance of being symptomatic. Interestingly, 42% of everyone with FSH,
of which it affects about 1 in 20,000, can get it by a sudden mutation whereby
neither parent is affected. Both of my kids have decided they don't want to be tested until perhaps they get to the point in life when they are considering having families of their own. It is now possible to test a fetus also so they have choices available to them.
At this time in my life I feel a much greater level of acceptance. It is mainly due to the support of my family, friends and the wonderful people I have met online that share this neuromuscular disease. When my daughter, Kelly, was about seven she told me "don't cry Mom, everyone is different just like snowflakes." How right she was! Remember, it is not a matter of our disABILITIES but rather our ABILITIES.
There are several FSH support groups for those afflicted and those who have a
loved one with FSH. Please let me know if you are interested and I will give you
further details. If you would like information from the FSH Society, I
would be happy to either e-mail or snail mail information to you.
If you can find it in your heart to make a contribution to the FSH Society we will
be able to continue research so that a cure can be found. You can make a tax
deductible donation to: The FSH Society, Inc. 3 Westwood Rd. Lexington, MA
Click below on this sweet angel to go to the FSH Society web page.
With advanced research those with neuromuscular diseases may one day dance.
Please click on the dancers to go to my family page. I'd love to show it off!
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