Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Hi , I am so happy you found . I love to talk to other Moms with CMT that have CMT kids. I am 35 I have 5 children 3 with CMT. 2 boys and a girl. ages 14, 12.and 10. Can you tell us more about your life and how you raised your children? Did your child without CMT feel diffrent? I have been told that the kids without CMT feel guilty that they don't have it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Thank you for the welcome Gretchen. I'm going to go and take a peek around at all the wonderful things your group has to offer. Take care, Snugglebunny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 : Welcome to . I'm 41 and have four children. Three of which I had before I had any idea that I have CMT. I got pregant with our fourth child about 2 1/2 yrs. after I was diagnosed but not having him was never a questions for us. My husband has rhuematoid arthristis which can be very hereditary. His grandfather had it and out of about 23 grandchildren my husband is the only one with it. I was adopted so have no idea my family history. So far none of our children have been diagnosed with CMT. I would never want to be without any of my children, they bring such joy and laughter to your life. One of the things I treasure most is cuddling up in a chair with my little guy and reading or story or watching tv together. Each one has been a gift. I truly believe that eveyone needs to take one day at time. There are a lot of other problems in life other than health issues to deal with. On the topic of your former boyfried I would like to simply tell you about my personal marriage. My husband had two attacks of Guillian Baire before he was out of high school. Before we were engaged he had told me about that condition and that the doctors had told him there was a very good possibility that he would never be able to have children because of it. He was very concerned that I wouldn't stay with him because of it. I simply told him that didn't matter if we couldn't have our own children, we could adopt. True love bears/understands all things. Keep looking for Mr. Right, he's out there somewhere!! You're still young. Keep your head up!! Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2003 Report Share Posted December 8, 2003 Welcome , I have had cmt all my life. i have four children and two granchildren. three of my children have cmt, one of my grandchildren has cmt, she is 6. I would not change anything in my life, it has been good. Dont worried about the things you cant do, think about all the things you can do.It will get better as you get older and except your cmt. You will meet the right person day. my husband has been my bigest suport. my two daughters have also meet very nice man. You can have a good life, even with cmt, but you have to help yourself a little. I walk funny two, but who cares, were not all perfect. there will always be rude people who stair or laught at anything that is different then them, these are people you dont need to know. I hope this helps, I am always hear if you need to talk. good luck. teresa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Hi , It is so nice to meet you. I am in USA/Missouri near St. Louis. Looking forward to being your friend too. Barbara from Missouri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Welcome to the group. Stan - Oregon - Hopefully Soon Texas.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 , Welcome. Would you care to talk about your symptoms? It may be helpful to the group members. Stan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Welcome , I live in New York, so I can't help you with the doctors, but anything else we can help you with we'll do our best. Again welcome to the family. B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Welcome , thanks so much for introducing yourself. I am a toe walker also and was teased in Jr. High about it (although was teased by boys only, so not really sure if this qualifies as bullying, or just young boy/girl stuff) It was upsetting nonetheless and like you I just handled it inwardly. I too went to a private school and things there were much different and more of my needs were met and I just fit in better. Strange - I used to live in LA, am just up 101 from you in SB County. Interesting about your redesigned shoes and orthotics. I may look into this. I'm also wearing orthotics, just take them out and place in other shoes. Really like your idea of the 10 minutes of power napping too. I am all for naps - refreshing! Again, welcome to . ~ Gretchen http://www.cmtworld.org http://www.aicmt.org http://www.neurologychannel.com/charcot/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2004 Report Share Posted February 21, 2004 Hi , I am 36 . I have had cmt since I was 4. I live in Los Angeles county. What doctors do you see? jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2004 Report Share Posted March 6, 2004 Welcome . Thank you so much for introducing yourself. No one in my family had any neuromuscular problems or CMT either. Spontaneous mutations do occur. Very interesting about your art therapy program. At one time I considered this, but changed to Art History. As for your question about dress shoes, try this place http://dressease.com/ the company was owned by a woman with CMT and she said the shoes accommodate AFOs. However, I have not personally tried the shoes, since I don't wear AFOs. Again, welcome to . ~ Gretchen http://www.cmtworld.org - Updated Daily http://www.aicmt.org - Has CMT Rehabilitation Management Book (outlines 7 stages of CMT) http://millercenter.uchicago.edu/learnaboutpn/typesofpn/hereditary/charcotmariet\ ooth.shtml http://www.neurologychannel.com/charcot/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 : Who is Al Dupont? Where is he from? My son also has issues with his heel cords/Achilles tendon. He is currently using orthotics-- he is also growing very quickly and the podiatrist isn't sure weather the pain is because the tendons, etc cannot keep up with his foot growth(size 15 shoe, 6'2 " @ 12 ). The orthotics have really helped with the pain in his heels. Welcome to the group, glad you found us. What meeting are you talking about. I too live in PA and would be interested in knowing more about it. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Welcome , I would be very interested in your information for your next meeting. I am in Montgomeryville area and have a 14 yr son with CMT. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Welcome . So glad you are here. I am Cathleen from Arkansas and I am 50 years old. I was a very clumsy child and hurt often but I wasn't diagnosed until 1994. I cried to know I wasn't crazy and imagining the pain I was in by this time. I like to look on the sunny side of life and my sense of humor keeps me going. I am married to a great guy who helps me and is always finding ways to adapt things to make my life easier. I will look forward to reading your post. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Welcome : I am so glad that you have officially joined . I just recently found out about the support group. I was having my annual visit at Dr. Scherer and we spoke about him speaking at your group. I was unable to attend but would really like additional information about meeting times and places. Again welcome! Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 welcome to the group. glad to have you here, we are always learning from each other. Feel free to share qwith usa. Cathleen in Arkansas ( a texan by birth once a texan always a texan.LOL) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Hello , welcome.... I too have had major feet surgeries. One in 97 the other eight months later. I couldn't put my feet flat on the ground. I could wear nothing lower than a 2 " heel. Thanks to the surgeries, I can now walk with my feet flat on the floor ! Such a miracle. I also had my arches lowered, they were extremely high. I know what you are going thru, but it will all be worth it ! Take Care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Hello and welcome. My name is Betty and I live in Lancaster, PA, and I also have Dr. Zachary as my neuro and I think he is a great doctor also. Where in Pennsylvania do you live? Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2004 Report Share Posted April 16, 2004 Welcome ! rQn I (The HNPP guy! " Way over here in Oregon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Welcome , thanks for the introduction. You live in a beautiful state. I lived there for 3 years. (Guthrie/Edmond area) The redbud blooming trees in spring were gorgeous. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Welcome !! I am a newbie to this group also and have already met some very nice people and have learned a great deal! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Welcome , glad to have you as a part of the group. ) I, too, am in Oklahoma - Okc; what part are you in? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Welcome , I'm Liz. I'm 20 with CMT since I was 3. I am originally from NH, but I go to the University of Kentucky. If you are ever interested in talking to someone your own age, just e-mail me! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi , Welcome, my name is Im 14 and have CMT. I am from PA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 : I'll help ya all ya want if I can move from Oregon (cold) to Florida (warm). Welcome aboard! rQn I Quote Link to comment Share on other sites More sharing options...
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