Muscular Dystrophy

Posted on: Fri, Mar 28 2008 1:11 PM

Posted by: shellGVchick Posts: 1,261

Hi Saska and Stephen nice to have you here as well. 

Posted on: Fri, Mar 28 2008 1:16 PM

Posted by: eventtra Posts: 27

Welcome.

Posted on: Fri, Apr 18 2008 10:24 AM

Posted by: giraffeboy Posts: 6

Hi,

Vickieh67.  I was also born with CMT and I was diagnosed at 16 when I could not walk the halls of high school.  My mother had four children, four boys and one girl.  All of us boys have contracted CMT as a result of her being a carrier, and my sister does not have it.  We are all in our forties, and I am told that I am trhe worse off of all the brothers.  I wear orthotics (braces) on eacgh calf and walk with a cane in public.  I mostly use it outside and in public buildngs to kep fingerprints off of the walls.  There are enough handholds in my house not to use the cane.  I have gotten no harrassment from anyone for using it. 

When my wife and I first went to MDA clinic, they warned us not to have kids, because I know what it is like to grow up with CMT and I would not want to put children through that.  We didn't listen to that advise and now have two beautiful children,  11 and 12, and would like nothing more.  They ae both very haelthy physically, and have no symptoms or side effects.  No surgery is forseen, and I don't think it would help.

If you would like to know more, feel free to contact me,  after we are here for support.

 Mark. 

Posted on: Fri, Apr 18 2008 11:16 AM

Posted by: Vinny Posts: 746

Salutations to all the new members, Saska, Vicki, Stephen, Giraffeboy

Welcome to Disaboom

Stay Strong

Vinny

Posted on: Thu, May 29 2008 10:24 PM

Posted by: Centralnjguy1975 Posts: 1

Hey I am 33 with CMT.  I have been diagnosed at age 5.  I was told I would be in a wheelchair by the age of 20 and here I am 13 years later and still walking, not great but still walking :)  I just started aquatic therapy and I highly recommend it.  I have already seen huge improvement in a short time.  Feel free to contact me any time.  I can certainly use a friend.

Andy

Posted on: Fri, May 30 2008 6:13 AM

Posted by: giraffeboy Posts: 6

Hi Andy,

I also have CMT.  I was diagnosed at 16.  Life has beena struggle for me.  I was told that I would be in a wheelchair by age 30.   I am now 41 and, like you, amd still walking, with a cane as my constant public companion.  I do wear AFOs, custom fitted braces from my calf that wrap around my feet.  Help quite a bit. 

I have been married for 14 years.  My mother in law tried to talk my wife out of marrying me.  She didnt want her to be my nurse for life.  Hasnt happened yet and we have 2 beautiful daughters, neither affected.  The dr told us, shortly after we were married, to not even bother having kids bercause I know what it is like growing up with this disability. 

Contact me if you want to know more.

Mark