Hi, my son is almost 18...He has dmd. He
no longer goes to school and is wheechair
bound and has been in a chair for 6 years.
I don't work because I care for my
son...It's the hardest thing in the world
to deal with,i have suffered depression
ever since we found out he has md..We
found out before he turned 2, due to other
medical problems..Somedays I have a hard
time coping, but I know that I have to do
all things for him..And that's ok too,
because he is my son..But until you live
with a special needs child you could never
fully understand what we all go
through..But i'm thankful for having him
in the moment. :)
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Pebbles42602
New User, Becoming EHEALTHy
Joined: 17 Feb 2005 Posts: 1 Location: New York
Any Information You Have Please Let Me Know! Posted: 02-17-05 21:08pm
I just found out a cousin of mine who I
haven't seen in years has been suffering
from muscular dystrophy....Sharko marie
tooth. He had leg cramps as a kid and is
only 23 now and has barely any muscle left
in his leg. I've done a lot searches
today and still feel like I know nothing.
So if you could please let me know even
just that basic facts that would be great!
:) thank you!
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texasmusicdoctor
New User, Becoming EHEALTHy
Joined: 27 Mar 2005 Posts: 2 Location: Texas
Re: Any Information You Have Please Let Me Know! Posted: 03-27-05 20:40pm
pebbles42602
wrote:
i just found out a cousin of
mine who I haven't seen in years has been
suffering from muscular
dystrophy....Sharko marie tooth. He had
leg cramps as a kid and is only 23 now and
has barely any muscle left in his leg.
I've done a lot searches today and still
feel like I know nothing. So if you
could please let me know even just that
basic facts that would be great! :)
thank you!
i have sharko marie tooth disease. My
father was diagnosed when he was in his
30s. After they found out he had it, I
was tested. I found out I had it when I
was 6 years old and I am now 32. I don't
have good muscle strength in my legs, but
I use my hands at work and I believe that
has helped. I have researched this
disease extensively. If you have
questions, ask.
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texasmusicdoctor
New User, Becoming EHEALTHy
Joined: 27 Mar 2005 Posts: 2 Location: Texas
Re: Any Information You Have Please Let Me Know! Posted: 03-27-05 20:47pm
It is actually spelled charcot marie
tooth
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sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
Posted: 03-27-05 22:01pm
Hi there! You are a great person, please
give yourself some credit! I have worked
with md people before in special homes,
they are such special people too! I am
sure that it is rough on you! I do hope
you have some in home help so you can have
some time for yourself. Their are some
good support groups that might be able to
help you!
The best to you and yours!
Sincerely,
sandy
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Lordlancelot
New User, Becoming EHEALTHy
Joined: 23 Oct 2005 Posts: 10 Location: Liverpool
Posted: 10-23-05 14:47pm
Hi I myself have dmd its good that you
help your son I understand its hard to
cope so take your depresion times it by
ten and thats what your son will feel
like, he has to cope with his disability
your depresion and life in a wheelchair
i'm not seying your a bad mother for
feeling that way but look at it from his
point of view any questions just ask
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diamondsz
Extremely EHEALTHy
Joined: 07 Oct 2005 Posts: 3173 Location: , Candyland-Canada
Thanks: 74
Thanked:104
Posted: 10-23-05 15:11pm
My father has md non of us got it except
my sister has partial cerebal palsy. My
father is now 43 and has done things the
drs told him he would never be able to
accomplish, he plays guitar, he walks and
does other things thought not possible.
I understand as me and my 5 sibling had to
take care of my father on a bad day such
as massages to stimulate muscles in his
legs etc......
My father has a form of md only known to
5-6 other people and therefore no studies
have been done. Be happy that your son
is living, if it wasnt for my father I
wouldnt be alive at this day, my father
is exceptionally brilliant and a stay at
home dad. I dont pity him but I give him
my respect for doing the stuff he does
