Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 I really understand your post, I am thin; my thighs are thin so I do not have the " champagne bottle " appearance ...but, my calves have wasted and I am losing muscle strength all over although I exercise daily. Regarding attitudes, I don't know what to chalk it up to, in my own family there is denial/indifference (fear?)even though I can see two of my siblings becoming affected and one of them is an M.D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 LORI, HOW OLD IS YOUR SON? AND WHEN WAS HE DIAGNOSED?....I HAVE TWO BOYS AND I MYSELF HAVE THE DISEASE. PLEASE BE UNDERSTANDING. THIS COULD BE VERY FRUSTRATING. DONT OFFER HELP. LET HIM BE BUT, DON'T ADD TO HIS FRUSTRATION....DON'T CALL HIM CLUMSY OR ANYTHING LIKE THAT. I AM NOT SAYING YOU ARE DOING IT BUT, JUST LETTING YOU KNOW FOR MY OWN EXPERIENCE. WE (MOTHER AND FAMILY) MISTREATED MY OLDEST BROTHER WHEN WE DIDN'T KNOW HE HAD CMT. WE USED TO CALL HIM LAZY, CLUMSY AND CARELESS THEN I STARTED DEVELOPING THE DISEASE AND UNDERSTOOD HIS SITUATION. I FEEL REALLY BAD ABOUT MISTREATING HIM....IT TOOK ME TO GET THE DISEASE TO UNDERSTAND HIM. HE IS A LOT OLDER THAN I. WE ARE 5 CHILDREN AND ONLY THE TWO OF US HAVE IT. NOW, MY 2 BOYS ALSO HAVE IT. Betania From: mattheiss137@... Date: Tue, 1 Sep 2009 21:22:57 -0400 Subject: Re: Emotional journey Thanks Dawn and others, I like to hear everyones perspective as I do not have CMT but my son does. I want to try as hard as I can to understand him and how he feels and not try to trivialize his complaints but also help him to be strong and push on. Without experiencing it myself I find it hard to sympathize sometimes and I need to take a step back and think how he may be feeling. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi Betania. My son is 10 1/2. He was just diagnosed this past February. We are still working our way through information and getting as much knowledge about this as possible. I am communication with the school about possible issues he may have. We spent the summer going at his pace and when he was tired we rested and then continued when he was up to it. He is attending PT and OT sessions once a week. I am hoping the school will cover the OT as I cannot afford sessions as insurance does not cover. Lori From: mattheiss137@... Date: Tue, 1 Sep 2009 21:22:57 -0400 Subject: Re: Emotional journey Thanks Dawn and others, I like to hear everyones perspective as I do not have CMT but my son does. I want to try as hard as I can to understand him and how he feels and not try to trivialize his complaints but also help him to be strong and push on. Without experiencing it myself I find it hard to sympathize sometimes and I need to take a step back and think how he may be feeling. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 You are so right Betania...I have it my dad had it.....my mother is a perfectionist things said a done can effect a person the rest of their life.put the shoe on the other foot! It's not fun to a have CMT.nice to have a understanding family..others and kids on the block make it hard enough! Geri Quote Link to comment Share on other sites More sharing options...
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