Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Hi Deanna! So I see you found the group. It's not everyday I get referred to as a " gentleman " ! There are a lot of good people here who can provide good information. Best of luck and I'll see you Friday! Barry > Hello > > My name is Deanna. I live in Romeo, MI. I am married > with a 2 year old son and 4 teenage stepsons, 3 of > them have lived with us since we were married 7 1/2 > years ago. I am not sure when I was diagnosed with > CMT. I guess I just always knew I had it since my mom > and her mom and her mom (4 generations) all had it. > Just this year, I starting wearing leg braces. I > recently met a gentleman who also has CMT and he told > me about this web site. I look forward to > corresponding to other people who almost literaly > 'have walked in my shoes'. I have alot of questions, > especially where do women get dress shoes from (if > they even exist) and ways of dealing with stress. I > look forward to hearing from others with this > condition. > > Sincerely > Deanna > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Stuart, Welcome to ! This group is a wonderful, diverse group of people with lots of different experiences and information to share! I'm really glad you joined us. I hope you learn a lot from our experiences and CMT information and I look forward to learning about your experiences! Once again, Welcome! Oh and let me add a quote that I go by that a member of our group uses a lot: The important thing is never to stop questioning! Ask whatever questions you have! We're here for each other. On Sat, 26 Jan 2002 10:44:44 -0800 (PST) Stuart Huckinsen <stuart@...> writes: > Hello. My name is Stuart and I have just joined this discusssion > group. I had previously been on > another that did not suit my needs - there was just too much fluff > and not much about CMT per se. > My doctor recommended I contact a group called so I looked > this group up on the Internet and > here I am. I liked the description of the group very much, > contacted the moderator and > subsequently joined. > > As for my CMT: I was diagnosed at age 8: had two surgeries when I > was 12 to 14, on my feet, one > at a time, but I did miss school. In those days my folks got me > tutors, which I really liked, as I could > do school work at my own pace and it was very encouraging. My > surgeries left me with big scars, > but to this day ( I am in my 40's now) I am still on my feet without > aid, so I consider them successful. > > As for my life: I'm married, with two beautiful twins, whom we > adopted, as we had genetic counseling > prior since I knew my CMT would possibly be inherited; rather most > likely! The twins are a boy and a > girl, very close, and we are a close knit family. The children are > balls of energy and I truly enjoy this, as > with my CMT, my energy level wains and I find just being around them > or helping to build some Lego > Starship thing that a certain psychic energy is restored. > > As for my career: I am a corporate attorney, also have a degree in > business. Just about everyone I work > close with knows I have CMT, as I am always upfront with this, and > find I am well respected for this honesty. > My CMT primarily affects my feet; so I have custom made shoes and > also orthotics. Walking distances I do > slowly, giving myself plenty of time to get where I need to be, and > I usually arrived before I need to be at an > appointed time, giving myself time for composure, and then to review > mentally. > > Weekends when we can, we do 'family days', usually one day set aside > to visit a new amusement park, or > special museum exhibit (dinosaurs are big with the kids!) or when > days are warmer we do picnics and > trips to beaches or hiking areas. I am also a photo nut so I am > constantly snapping photos of all this - it is just > so wonderful and my camera tells even a better story. And yes, " we " > ,the children and I, have a sole > scrapbook just of Lego photo-creations! They are trying never to > make the same 'creation' twice! And yes, > I buy film in bulk! We also like to get away in the summer as a > family for two weeks vacation, incorporating > fun AND learning. There is always something 'new' to learn for the > four of us! > > So, I shall end this Introduction and look forward to hearing about > your lives and learning more about CMT in > a more substantive way. > -------Stuart > > > > > _____________________________________________________________ > Get free web-based IT Professional email, to be recognized as one! > ---> http://www.mailchoose.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2002 Report Share Posted February 8, 2002 Hi, I am new to the group so I'm not too sure how things work in here, I am just looking for a response so here goes... I am currently in the US Army, stationed in New York and I have been diagnosed with CMT. No one seems to understand just how devestating this has been nor do they understand just how bad this is disabling me. I have trouble walking very far at one time and even standing on my feet for more than 30 mins at a time is killing me. I am wondering if there is anyone else out there who is willing to talk to me about their experience with this disease. I too think I am having trouble with my " pride " and needing assistance from others to do the basic things in life. I really hate it. Best regards, Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.