Guest guest Posted January 17, 2000 Report Share Posted January 17, 2000 hello i live in boston mass i would like to know does the afo help i have trouble with my ankles they are very weak i am46 the doctor just told me i have cmt last year. thanks ruth >From: WHACKOMOM@... >Reply-onelist >onelist >Subject: Re: [] WELCOME Rose-Marie >Date: Mon, 17 Jan 2000 21:10:42 EST > >Hi welcome to all who have recently joined- I am in Missouri- they call me >a >spontaneous mutant- no one in my family as far back as they could go had >any >symptoms of CMT. I have 3 too many kids- none of which are showing signs- >as >of yet- I was dx'd as a child- i am 36 now- my ankles are fused, I wear >afo's, have clawed hands, and a paralysed vocal cord....but I have a great >personality!! >Elena ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hi Ruth, Ruth Warren here. (Another Ruth ) I am now living in Raleigh, North Carolina. I am 41, was diagnosed at age 6 (back in the dark ages of the 60's, as Gretchen would say...) I wore leg braces at night during my childhood. (The braces were metal and leather - I was an original " heavy metal " child, hehe.) I wore nothing from mid-teens until this past year. Then my knees started to collapse under me without warning. I now wear AFOs and they are helping me tremendously. They give me the support I need and I feel confident that I can stay on my feet all day without falling. They aren't much of a fashion statement, but at this point I'll take function over form! If you are having trouble walking then orthotics are definitely something to consider. The type and form of othotic is extremely variable - what works well for one person can be awful for another. One thing about CMT - it treats all of us in a variety of different ways. Good luck in your search to find what's right for you. Keep asking us all questions and jump in with your opinions too! Ruth Warren >From: " Ruth Doherty " <ruth1953@...> >Reply-onelist >onelist >Subject: Re: [] WELCOME >Date: Mon, 17 Jan 2000 21:26:03 EST > >From: " Ruth Doherty " <ruth1953@...> > >hello i live in boston mass i would like to know does the afo help i have >trouble with my ankles they are very weak i am46 the doctor just told me i >have cmt last year. thanks ruth > > > >From: WHACKOMOM@... > >Reply-onelist > >onelist > >Subject: Re: [] WELCOME Rose-Marie > >Date: Mon, 17 Jan 2000 21:10:42 EST > > > >Hi welcome to all who have recently joined- I am in Missouri- they call >me > >a > >spontaneous mutant- no one in my family as far back as they could go had > >any > >symptoms of CMT. I have 3 too many kids- none of which are showing signs- > >as > >of yet- I was dx'd as a child- i am 36 now- my ankles are fused, I wear > >afo's, have clawed hands, and a paralysed vocal cord....but I have a >great > >personality!! > >Elena > >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hi Ruth! I got my AFO's about one year ago and yes, they do help with weak ankles. When I got mine I needed them for foot drop but since then my left ankle has become very weak and I need the support from the AFO. If I didn't have it the least little turn and my ankle probably would sprain or break. It amazes me how fast this disease seems to progress. When I first was fitted with my AFO I told my orthopedist that my ankles did not need the support but he insisted that they be made with the ankle support and now I am glad he did. Good luck! Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2000 Report Share Posted March 1, 2000 onelist skriver: > i hope that this >hasn't made any one bored??!??!?? Absolutely not! I´ve read your messages and I must say; what a brave and wise teenager you are! I also deal with doctors who doesn´t try to undestand many CMT-problems (when I for example said to him for a couple of years ago that my hands felt weaker and was hurting he said: that kind of problems doesn´t belong to CMT). And I feel very confused , scared and frightend when meeting such a doctor (neuro.) and I am 40! It´s also good for me to read about your experienses in school as my sons also have CMT and CMTrelated problems in school. Many good lucks to you from Rose in Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 Hi Alisha Pleased to meet you. and you did'nt bore me at all. I think you have great courage for your age. I have a 16 year old daughter called Kristie. So far we don't think she has Cmt maybe you could write her. She knows a lot about CMT and has done a lot of study on it. I also have a 13 year old daughter, Amy and a 10 year old boy Matt who has just been dx with CMT type 2. He is not coping very well as he is a keen sportsman and is very good at sport. I also have a two year old daughter, Taylah she has'nt been tested as yet. I think it's great you have parents who are there for you. And I think it is a fantastic idea how you write them how you feel. I wish my daughter would do that . Espeacially at 16 it is a hard age. Take care and keep up that great courage. Lee-anne ---------- > From: Alisha Peckham <fivertherabbit@...> > onelist > Subject: [] welcome > Date: Wednesday, March 01, 2000 10:10 > > From: " Alisha Peckham " <fivertherabbit@...> > > lee-anne, > my name is alisha, i am 16 and live in canada. i have x-linked cmt and use a > walker 4 mobility. i started having problems with my left ankle when i was > 11 and when i was 13 i got tested by EMG and DNA testing. later on i started > having problems with my other ankle, hands, wrists, knees, and legs. i have > two sisters and 2 supporting parents. i was very angry at my parents b/c of > the cmt but i am getting over that now. i had and still having problems with > my school but now due to much anger and yelling and another disabled student > we are getting an elevator, i am getting a lap top and my courses have been > reduced to 2 classes in the morning. with the work of a great OT, a physio, > and parents u can get what u want. another thing is that b/c its hard 4 me > to talk to my parents i write down me feelings and problems and they help me > with them and they come to me when i have written down my problems and i > find that this is great 4 me. sorry 4 going on so long, i hope that this > hasn't made any one bored??!??!?? > > " I am not crazy, I am just a teenager! " > http://home.talkcity.com/OceanBlvd/cmtx/index.html > ICQ # 47695812 > for information on CMT go here > www.cmtint.org/ > are u a kid or teenager with CMT??? > wanna talk to others with CMT???? > join here if u want to > CMTchildren-subscribeonelist > > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > > ------------------------------------------------------------------------ > Show your style! Choose from 6 great card designs when you > apply for Capital One's 9.9% Fixed APR Visa Platinum. > 1/1894/5/_/616793/_/951865828/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 Hi and welcome to the list....These folks on here are the best! CSCluv** http://community.webtv.net/cat926/CATHYSCOOLCATCORNER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 So, what is the address for this group? I hope that we can share information that will keep us all improving our lives for the better. Some of the negative riffs were a bit tooooo much some times. My personal problem after surgery is hard stools. I take leathin and flax oil daily ,salads, psyllium and still am suffering. JR Quote Link to comment Share on other sites More sharing options...
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