First, I want to thank everyone for the welcome messages. They were much appreciated. I've been looking for a CMT support group for a few years so I'm glad I found this site.
My husband was diagnosed with CMT when he was 10 years old. For some reason that continues to boggle my mind, his family didn't discuss or address his CMT after the diagnosis. When I met my husband he was 23 and didn't even know the name of his illness, however had extreme calf weakness and foot drop.
My mother and I started researching potential disorders and thought it could be CMT, which was later confirmed by a neurologist, orthotics specialist, physiotherapist and podiatrist. The consensus was his CMT was very progressed by this time. He has tried a few foot braces over the years and now wears the Richie brace daily which he finds very helpful. He also sees a podiatrist on a regular basis for calluses and sees a RMT and physiotherapist just to keep the muscles loose.
I also get him to take a multivitamin, calcium and high dose of vitamin C daily.
Is there anything else we can be doing besides what I've listed above and trying to remain relatively active? We've never met or spoken to anyone else with CMT so I'm very interested in any advice you can provide. I've read some articles on additional supplements but I'm not sure if any of them are actually beneficial.
Welcome, M Hanlon. This is not the first time I have heard of CMT not being addressed or mentioned by a family. It's hard to understand. I think this attitude may have been a relic of an earlier time, when a potentially disabling condition was considered mysterious and something to be concealed. I'm sure our members can address this better than I can, though, and I hope they have tips for you as well.
I'm SK, and though I don't have CMT, I have various autoimmune diseases. So why am I here, you may ask? I have been a moderator here at Ben's Friends almost since I joined about 2 years ago. What a wonderful, caring group this is!
It was necessary for me to resign from moderation for 5 months when my Mom fell down the stairs and had a complicated hip break. Getting her over the hump, I returned and told them I was glad to help again, to put me where they needed help and support.
There is much I can learn from you and the other members!
Genetic diseases are heart breakers, especially when they affect children. Hopefully, together we can raise awareness and improve the lives of CMT patients and their loved ones.
I look forward to getting to know you, and the others.