Charcot-Marie-Tooth Disease Support Group

I don't know what is happening but I sent you a reply days ago and it was not posted if this get through do reply.

Yes this one got through I have had that happen to me from time to time . but maybe I'll get in the morning I will check ok looking foward to seeing the braces your dad made I am a retired home remodeler and I enjoy making things and seeing if they work. I enjoy hearing from you and seeing those braces are going to be something to see did he make them out of fiberglass or what ? I will talk to you tommorow had a hard day working on my house.

I, too, am eager to share experiences, hope, what works, etc. I'm 59 and always thought of myself as being young for my age. I was diagnosed 11 years ago, and was told I'd be in a walker within 10 years. Guess I'm still in denial, as I have no intention of ever using a walker. But I often feel that I'm the only "oddball" with the weakness, clumsiness, etc. I've whined to my wife enough, so this website seems like a good place to share with others. Thanks for getting this discussion going.

happy to see a response yes it is kinda imbarassing to fall flat on your butt in front of people it makes me feel that they think I have been drinking. I still get around kinda ok with the braces, they do help for sure.but I find that my legs and feet have gotten to where they hurt more and more these days. But I can't say that this desease prevented me from having a full life I am Retired from the air force and also from my home remodeling bussiness so now I can relax and I an glad I don't have to get out there an try working like I use to because it would hurt a whole lot more I am sure. I loved working and it is hard to watch someone doing something that comes so natural to me..would like hearing more from you if you have the time. My name is bennie.

...glad to see others in my age bracket. I'm 59 and was diagnosed with CMT by the Neurologists at Johns Hopkins late in 2008. I knew something was "strange" with my balance 26 years ago when I was teaching youth karate and could no longer keep my balance. I suppose that the symptoms of CMT started kicking in at age 33. Now I try to keep active, walk with a cane (in crowded places or long walks at the mall). I cannot deal with uneven ground, ramps, no railings, dark places, etc. I have put handrails in my home on both sides of stairways. I play the WII at lot, joined the local recreation department's Silver Sneakers to regularly use the weight room (free) concentrating on the recombent bikes to help with leg strength. Today I just got back from the recreation office to collect info on Tai Chi classes (highly recommended by my Neurologist to work on my balance.

Check out this info from the Mayo clinic on
CMT: http://www.mayoclinic.com/print/ch...

...by the way, I've been able to trace CMT back three (3) generations by virtue of finding documents that my dad didn't discuss with us and recent family reunion discussions. It was interesting when I went to the last reunion with my cane (it was held on grass and dirt...I don't do uneven ground well at all) how many of my relatives are experiencing similar symptons???

I've built a family tree via Ancestry.com back six (6) generations. This is critical for a CMT Study Group that I've just joined.

...I'm done (after this comment). Stay active..but know your limitations. I made the mistake last year of agreeing to go to the Football Hall of Fame Induction in Canton, OH. Although I enjoyed the speeches getting there (into my stadium seat) represented the "Perfect Storm." The drive to Canton (I was a Passenger) was not bad because I insisted on fairly frequent stops because of either CMT or arthritis issues with my hip. When we got there we could not park any closer than a couple of miles..then there was a bus to take us to the museum/stadium. So far..not a problem for someone with CMT. At the museum/stadium...lot of hills and ramps...had to find a seat in the museum 'cause I can't walk for distancss. Finding a seat was an issue. ...then to the stadium..down a long ramp with nothing to hold onto..when I finally got down to where we would find our seats we were in the "nosebleed section" at the top. ..lots of steps, no railing..and young folks moving at 100 mph...then our seats were in the middle of where already in place. ..Here's the kicker...after the wonderful ceremony was over I waited of hundreds to move downthe unrailed steps..nearly fell..then had to wait for about 20,000 folks to get the bus back to the parking area. When I finally got to the line to go to the buses I it moved at one step every half hour..because of CMT I don't take short steps very well..I see a spot in the distance and walk toward it with pace.

The moral to this story is...."KNOW YOUR LIMITATIONS" and investigate the logistics of the event.

By the way, I'd probably go again.

I have not been on the internet for a while due to moving to another house and the service was unavaliable at that time.
So you are trying another form of martial arts to help with your balancing? would like to know if it does some good for you .
I also am trying to recover from a neck surgery they replaced three verdibra's in my neck. I love to work and this desease has made me reconize certain limitations in the kinda work I love. I remodel houses and to tell you the truth there are few and fewer people that do the work for the love of doing it they wont the dollars and that is the bottom line for them. got to get ready for theropy take care.

Welcome back. Hope all is well with you. Yes, my neurologist at Hopkins highty recommends Tai Chi to help with balance. My classes don't start until mid-October but I'm working on doing the exercises on my Nintendo WII using WII Fit and WII Advanced and the balance board that comes with it in the meantime. I'm a computer techie for about 40 years with little sensation in my fingertip and toes...but I too love the computer work. Up until last year I was a IT Computer Analyst concentrating on IT Securtiy but CMT slowed me down dramatically in my keyboarding skills. I've retired for the second time and serve a the Webmaster for our church as a volunteer (mostly copying and pasting content) since typing has gotten real tough for me.