Charcot-Marie-Tooth Disease (muscular dystrophy)

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Volunteersusan
Volunteersusan Posts: 2
in Introduce Yourself
Does anyone else have "CMT" like me and are trying to lose weight? For those of you not familiar with this, it is a genetic type of muscular dystrophy where you gradually lose the feeling and muscle elbow to fingertips and knees to toes. It was named for the 3 doctors who discovered it (has nothing to do with teeth, lol!). I wear AFO's (ankle foot orthotics...leg braces) and sleep in a splint due to hand cramping during sleep. Stairs and lots of walking are difficult. Gripping hand weights are difficult. I'm doing good to walk period! The only safe exercise I can do is water aerobics and some cleaning the house. What other ways do those with CMT safely get exercise? Since we have muscle wasting, I'm wondering if we require more protein than the average person? I'm a 52 year old grandma and my goal is to get down to 165 lbs (lose about 40 lbs). My poor pitiful bony feet just can't take this extra weight!

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  • Sus2nM0rs2
    Sus2nM0rs2 Posts: 3
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    I so have CMT...Charcot-Marie- Tooth and I find it hard to lose weight also. I did get the gastric bypass surgery and it helped, but now the weight is coming back on. You just have to eat health, and small amounts and focus on just eating mostly protein.

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