| Jim,
Although I do not have any experience with MD, my son was born
with Down Syndrome. The reason I am replying is to strongly urge
you to seek out the local Muscular Dystrophy Association.
When our son was first born I think the hardest thing was trying to
accept our fate. Our family and friends were very supportive and tried
to understand how we felt, but unless you've been there it is almost
impossible. I went through some very strange emotions and guilt. Not
to mention how I felt all alone in this problem. We got in touch with
the local support group and after _making_ ourselves go to several
meetings my whole attitude has changed.
We have learned so much from the experience of the other parents
and now that we are veterans, we can help out new families, it's a
great feeling being able to give something back.
The local associations are a great resource of knowledge and
support. IMHO.
Hope this will be of some help.
Good luck and God Bless.
Malinda
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| I just read an article on some advances in the treatment of this disease. There
are experiments being done at Univ. of Tenn. (I think) and I read about a boy
around 9 years old for whom the treatment had been quite successful. It had to
do with transplanting healthy cells which would generate more healthy cells (or
something like that). Anyway, their success rates were awfully good. Have you
heard anything more about this? I'm sorry that I didn't pay closer attention
and record the details. My dad has a muscle disease of some sort; it does not
exactly fit any known description of MD, but it comes close to it. I thought
of him when I read the article.
Sue
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| To the parents I can only hope you will find the strength you need.
I'd like to ask a question, and wondering if others arn't asking the same
one. I'm not trying to pry just simply curious, after last night's
movie "when you remember me" I can only ask is this "real" or was this
another Hollywood Hype? I found the events portrayed to be quite
dynamic, and yet depicted as depressing conditions. My other question
is realisticly, today, how many MD patients are actually
institutionalized? With all the recent advances, including Visiting
Nurse and other home health aids, wouldn't home care be more common.
The other thing I guess I blame on ignorance is, is it always fatal and
which factor(s) of the disease cause death. It seems these kids only
live through teenage years, I find that awful.
Lyn
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