I am new also, i have FSH and i found out that my saon had MD just waiting on
more tests to find out what form he has he is 11 months old. I have a fairly
normal life but I do feel the symtoms at times. I have other people in my family
that hace MD. One cousin died from Duchenne (SP?) i am not sure about the other.
Megan



________________________________
From: sandra dusenberry <kookycrafts@...>
To: fshsociety@yahoogroups.com
Sent: Saturday, January 3, 2009 6:50:39 AM
Subject: Re: [fshsociety] Hello Everyone! I'm new!


Welcome candyspop!  Glad to have you on board.  I am fairly new too and do not
post that much, but read and get a lot of help from that.  How old is your son? 
My mom and myself both have been diagnosed so far, but others in my family may
have fsh, but are not diagnosed.  I am very concerned about my granddaughter who
is 12 and tired all the time which seems strange to me for a 12 year old.  I am
constantly looking at everything as though it is a symptom of fsh. 
I can certainly relate to your feeling of uselessness.  I am in a wheelchair and
more and more unable to do very much physically.  I do home school my
granddaughter which gives me a great deal of joy that I can still accomplish
something useful.  There is always something that one can do to be of use even
if it is just offering a listening ear to a friend.
I will try and post more and hope to see you continuing to post also.  Sandy
P.S.  I have used the name kooky, Sandra, and Sandy.  For the New Year I am
sticking with Sandy

--- On Fri, 1/2/09, candyspop <candyspop@yahoo. com> wrote:

From: candyspop <candyspop@yahoo. com>
Subject: [fshsociety] Hello Everyone! I'm new!
To: fshsociety@yahoogro ups.com
Date: Friday, January 2, 2009, 9:25 PM

Hello. I just joined and was trying to follow some of the blogs.
Glad to know there are others who can help. My son and I have fshd
and have not been able to find any real resources. He has been fitted
for leg braces due to his foot drop and falling down all the time.
But I appreciate anyone's advice and new information. Sometimes I
feel so useless.

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