Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 Joi K here AKA OPECHEZ (pronounced Oh, Peaches) that's my nickname and the license plate on my purple Harley! I'm divorced 40 yrs. old and have a daughter who is 21.(She was in playboy a few months back, how cool!) Anyway, I'm a Certified Personal Trainer in Sacramento, Calif. I have CMT1A I am mildly affected (It doesn't seem mild to me!) I'm losing all life as I know it. Career (retraining) Hobbies, ex-bodybuilder, very physical lifestyle! Boo hoo/ Waaaa!!! P.S. I like the freudian slip , LOL Joi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 My name is Annie Légaré. I'm 25 years old and live in Québec, Canada. Diagnosed around 10 years of age. My father have CMT too. eGroups Sponsor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 -----Original Message----- From: Liz0776@... <Liz0776@...> egroups <egroups> Date: Thursday, November 09, 2000 3:34 PM Subject: [] re: roll call >Hi everybody I am Liz I live in Millbury OH >I have three kids one 15 one 11 and one 9 >I work in a factory on a rotating swing shift so I >usually just read everybody's emails they are very >helpful but I have one question...awhile back I remember >reading something about cmt being a syndrome or disease >my DR at work called it a syndrome is he trying to down play >the seriousness of this disease by calling it something lesser? Liz > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2000 Report Share Posted November 10, 2000 Don't be led astray. CMT is definitly a disease with highly variable effects between people and at different times of life. It is caused by a genetic defect and you are born with it. At the present time there is no direct treatment or cure. We must all learn to live with it's effects. I for one want to know all I can about it in order to regulate my life. It is not easy to diagnose. A limited number of types, only 4 out of thirty some odd, are detectable directly with DNA blood tests. - EdM -----Original Message----- From: Liz0776@... <Liz0776@...> egroups <egroups> Date: Thursday, November 09, 2000 3:34 PM Subject: [] re: roll call >Hi everybody I am Liz I live in Millbury OH >I have three kids one 15 one 11 and one 9 >I work in a factory on a rotating swing shift so I >usually just read everybody's emails they are very >helpful but I have one question...awhile back I remember >reading something about cmt being a syndrome or disease >my DR at work called it a syndrome is he trying to down play >the seriousness of this disease by calling it something lesser? Liz > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 In a message dated 10/11/00 02:33:21 AM Pacific Standard Time, jtwaddell@... writes: << My name is Twaddell. I'm 30 years old and live in Los Angeles, CA. I was diagnosed when I was 20 but was having obvious symptoms since 14. >> HI , What Dr do you go too? I also live in L.A jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2000 Report Share Posted November 12, 2000 Hello Carolyn and all; I am a 42 yr old single Mom, with one son. He is 14 years old now. We both had many difficulties. So, when he was 5 years old, we began visiting many doctor's. Finally 4 years later and many doctors, day surgeries and other tests we were diagnosed with CMT. My Mom and Dad were divorced, when I was 8 yrs. old. We have not had any contact with him since. We also, have no idea were this CMT comes from in our family. I am the middle of 5 children, and the only one with CMT. My son is also the only one with CMT in his generation. I thank God, for this beautiful child, he has given me so much strength to carry on ward. I wish so very much that, he did not have to endure this disease. We have a close relationship and most of all a great sense of humor. I am having more and more physical difficulties at this time. My son is always there with a helping hand. Either to hold my arm to stability, as well as open doors for me. He's a wonderful young gentlemen. We live in White Rock, B.C. Canada... All the best Marilee > Hi, All. I'm Carolyn, age 61, dx'ed with CMT2 about 10 years ago. > Life history of falling. Mother has milder CMT2. One daughter - so > far shows no signs of CMT. No other known cases in family and don't > know where heredity for CMT resides further back than mother - > spontaneous with her??? I live in San , Texas. > > Regards to all, Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2000 Report Share Posted November 12, 2000 here, Mansfield, Ohio. 47 yr. old female. married with 9 yr old son. Been lurking on list for a while, this is my first post. I was dx 5 years ago, don't know what type. Just putting a name to what I had was a relief. I went through about a 6 month period of toe walking when I was about 10. Didn't go to Dr. then, parents said it was just growing pains. Sounds like so many others I have read about here. I realy enjoy reading the postings and have learned a lot. I am still working full time. Supervisor, Operator Services for local phone company. I have AFO's on both legs and have noticed hands geting weeker all the time, espically with cold weather setting in. I have a real hard time handling change and holding things. But like the Energizor Bunny, I keep going and going and going. As long as I can anyway. Okay, I'll quit going on, just thought I would answer the request for roll call. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2000 Report Share Posted November 13, 2000 Hi, I am Ruth Creasy, female, age 60, reside in Santa Barbara, California. I suspect that I am also one of the luckier ones as I have no pain associated with my CMT, other than aching and often ice-cold feet, and take no medications for it. Symptoms came on at age 3; by age 4 I was wearing metal leg braces and high top shoes in the daytime and sleeping in aluminum splints made by my dad at night. The night splints were to counteract the growth of the foot bones which were trying to grow in an arc. I am so thankful that my parents had the wisdom to take action into their own hands and not wait for the doctors to formulate a treatment plan, otherwise, I suspect that my life would have been much more difficult. Spinal tap and other frightening tests at age 3 at Children's Hospital in North Hollywood - they came up with " infantile paralysis " . Finally at age 9, I was diagnosed (thanks to the Shriners) at Children's Orthopedic Hospital in Los Angeles with CMT, some form of type 1, I think. A sister was diagnosed at the same time. Another sister and brother were unaffected. Dad may have had a mild case, never tested or diagnosed, but I remember that he often got cramps in his feet during the night - a possible clue. Unable to trace any other signs of CMT in the family. Dad had two siblings who died as infants, but no idea as to the cause. EMG (painful and scary for me as a 9 year old) and other tests at UCLA medical center. Daily injections of B12 and ingestion of brewer's yeast for a year or so (guinea pig trials), massages and chiropractic visits. Ankle fusion surgeries at age 9 and 10. Discarded high top shoes and metal braces per doctor's promise. At age 11, a well-meaning ballet teacher offered her services as theraputic exercise. She worked and worked to limber up those fused ankles and guess what? Foot-drop,again! Vanity kept me from going back to braces for a long time. I finally got tired of tripping over my feet about 12 years ago and am now in AFOs. My progression was slow but steady from age 3 to approximately 12, atrophying the muscles mainly below the knees and below the elbows, then went into remission or progressed very slowly for about 40 years and is now progressing slowly again. I can still walk unaided, but rely more and more on one crutch as I have no balance. As a child and young adult I rode a bicycle for transportation, now I only ride a stationary bike! My sole experience with roller skating was at age 21 and limited to one tour around the roller rink with an experienced skater on each arm trying to prevent me from doing the splits! I drive a standard car, carefully selected for comfort and adequate room to lift leg from accelerator to brake, I live alone, work 9 - 10 hours daily in a one-girl construction office doing receptionist, secretarial and bookkeeping duties and manage 13 rental units. I live and work in order to travel. I enjoy cruises because they involve less baggage handling, there is lot's of entertainment and I can do as little or as much as I want and I am totally pampered! Roll call complete! Ruth C Quote Link to comment Share on other sites More sharing options...
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