Hi all - my mother is in her late 70s and has always been told she has a "mild" case of CMT. But recently she has weakened to the point where she sometimes cannot stand or walk at all. Unless she can get better, she is likely to be motorized wheelchair-bound and even require assistance transferring in and out of it.
I keep reading that most people with CMT can walk throughout their lifetime, and less than 5% require a wheelchair, so I'm having trouble figuring out how someone with a "mild" case can end up losing virtually all mobility. Is this actually typical for CMT as people age?
Admittedly she has been very inactive and her nutrition has been poor. Those things are being addressed - she is starting PT, better food and a vitamin D supplement. I'm hopeful she can improve but that remains to be seen. Anyone have any experience improving mobility through PT or other changes?
hello im 61 and have cmt1a I was ok most of my life yes tripping falling etc but now I use a scooter walker in the house etc everyone is different..my sis has this also and has had over 26 surgeries ..again everybody different
Hi, my mother is 88 and has progressed from walker to scooter to motorized wheelchair over the past 10 years. She is able to transfer in and out of the chair by herself, but is otherwise completely dependent upon her chair for mobilization. She too cannot walk or stand on her own. Mom was diagnosed with CMT in her 50's, but has probably had it since childhood. They just didn't know what it was back then. Like your mom, my mom is inactive and has often had poor dietary habits. She has been told that PT would have definitely helped, but she now has so many health issues and muscle deterioration & weakness that she won't even attempt any type of physical therapy or exercise.
I too have CMT, having been diagnosed in 2010. I've been told that low impact exercise (walking/swimming) would be beneficial. I've started to increase my walking and definitely notice a difference. It has helped my coordination some and I feel like my legs are a bit stronger. I also will be incorporating lifting some light weights.
Do the best you can to encourage your mom to eat healthier as I'm sure that helps also. I don't think it's ever to late for some type of exercise. While you can't necessarily get back muscle that's already atrophied, you can help maintain the muscles you do have with exercise. My neurologist started me on vitamin D3 and also a B12 supplement. I am rarely ill and think that one or both of these supplements are helping.
I am in a manual chair and I am in my 40’s. Each progression is different. Your mom is probably less active due to fear of falling, tierdness, and depression. Physical therapy is just exercise, not a “fix”. Try doing simple, fun activities to keep her motivated first and foremost. Physical therapy can help, but I think getting her to a park or party regularly helps as well. Try to include her in activities, but make sure she can rest as needed.See if you can help her feel productive. Nutrition helps, but again, her happiness
is most important and may improve her activity level. You may have to accept her increasing weakness.