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My husband, Jim has CMT. After several wrong diagnoses, he was

diagnosed at the age of 63. His calves look like sticks, his ankles and

feet are deformed, and he has lost a lot of muscle in his hands. He

wears braces if he has to walk any distance. Otherwise, he has orthotics

in his shoes; his gait is quite awkward, mostly because of the foot

drop. He also has a two wheeled scooter, which he likes, but it goes so

fast, it scares me. He falls several times a year. He has no family

history except his mother, sister, and one of his two nieces have very

high arches and insteps with smaller feet. He has three sons ages 43,

38, and 19, all without symptoms. He was tested at UCLA for two genes

and didn't have them. He swims in our pool in the summer and

occasionally goes to my water aerobics class. He " dances " to music

while sitting or lying on the bed for aerobic exercise. {For those of

you who have trouble keeping up with water aerobics, you can get a

flotation belt and go in the deep end or pound your joints less in the

shallow end.} One foot is purple, but the the circulation is the same

as the other leg. He suffers from the cold a lot; it doesn't help to be

married to someone with hot flashes. He takes neurontin for the pain.

He tires easily, which is why I am the one writing this.

I have tried to follow the information on genetic testing and

CMT as it comes in the newsletter and on the web, but most of the

information seems to be on child onset, not onset CMT. Are there

more tests? Would his sons be wise to attempt to build up their calf

and forearm muscles as much as possible in case they end up with CMT?

Does being very muscular delay the effects of the disease?

Ellie