Coping With Charcot-Marie-Tooth Disease

I can remember as a small child crying with leg pain. My mother would take hot wet towels and wrap them around my legs which brought much comfort. when i was about 6 or 7 years old i wore leg braces 24-7. i slept in them at night and wore them all day. the only time i could take them off was when i took a bath. you can imagine the discomfort this brought to my other sister i slept with at night. i have 3 other sisters, 2 older and 1 younger and i am the only one that has been diagnosed with cmt

when i was in school i was very embarassed with the “ugly” shoes i had to wear and i guess i put up so much fuss i suppose my mother didn’t make me wear them. she also has cmt and is 78 years old. she has been wearing braces for many years. cmt has a long history in my mothers family. her father, his mother and most of his brothers and sisters and her brothers and sisters had/have the disease.

i am 53 years old and i went to a neruologist about 4 years ago just to find out how bad it was. he said i had a mild/medium case. i have never been able to squat and get up and sometimes would just fall down over the smallest items. uneven sidewalks or rocky slopy land are the worst. my legs hurt sometimes and if i do a lot of walking my legs get weak and hurt but my main concern are my hands and fingers. i can tell i am loosing my strength daily in them. small jobs such as picking up small items off the floor or using the tweezers, or nail clippers. i don’t have enough strength in my hands to hold heavy items or open lids. the neurologist pointed out to me the thinning layer of skin between my thumb and index finger and he said that was muscle tissue i was losing. i want to check with my insurance company and see about taking therapy on my hands before i lose all my strength and grip.

i have 2 daughters and 1 grandson and as far as i can tell none of them have been passed this terrible gene. i go to a foot dr. about every 3 months to get my toe nails clipped, which everyone of them grow inward, which is another wonderful trait so he has to pull out the ingrown toenails and trim the bunions off my feet. Those also go right along with cmt. so it’s not an easy disease to live with but it can be done. it makes me look at people with other disabilities with a different outlook. I look at some of them that have to use crutches and braces and can barely walk and I think I don’t have any reason to complain.