When I was a child, my doctor noticed that I walked funny and put braces on my legs to stop my feet from turning inward. When the braces came off, my feet turned outward instead. My parents didn't want to risk anymore issues, so they opted for putting me in foot orthotics instead of more braces. All throughout school, I tried to play sports but just was too clumsy, tripping all the time or not able to run fast enough.
Finally, at age 33, I saw a new neurologist for migraines that was interested in figuring out what was wrong with my whole body, not focusing on just the single problem that I had come to him for. He ran an EEG and an EMG, discovering that I had CMT.
Putting a name to the disease and realizing that alot of the other medical issues I had (like fatigue, little eclectic shocks in my legs and poor muscle tone) were stemming from this one thing. He started me on Magnesium and Balanced B50 vitamins and physical therapy. In PT, I learned that I'm not LAZY, I really have to limit my activity and pace myself or I will get too tired out. The vitamins also have helped me regain some of the sensory nerve damage. I have also found that while walking is a chore, riding a bicycle is good exercise that is easy enough on my legs, I can do it frequently. I was even able to do some of my PT in the water, which worked out great since we had such a HOT summer in 2011.
I am walking with a cane or leg braces now, but combined with my visual impairment, I recently qualified for disability. While it isn't the worst thing and I don't tend to have a lot of pain, it isn't fun. BUT, I have to thank GOD for the new understandings that I have about what I can and can't do, AND for the great family that I have supporting me. While my daughter doesn't like it when people refer to me as blind, lame or disabled, she does her best to ask me how I am feeling and what she can do to help me so that I am not fatigued.
I'm still learning about CMT, but it is so freeing to finally understand that I am not lazy and what I am able to do.
- UNDERSTANDING CMT
- RESOURCE CENTER
- ABOUT THE CMTA