Looking for friends with CMT (Charcot-Marie-Tooth Disease)

6566tess
6566tess Posts: 39 Member
edited December 2024 in Fitness and Exercise
I have CMT and am wondering if anyone else has and how they cope. In case you don't know what it is and are wondering here is the description (Foot deformities, such as high arches and hammertoes (a condition in which the middle joint of a toe bends upwards) are also characteristic due to weakness of the small muscles in the feet. In addition, the lower legs may take on an "inverted champagne bottle" appearance due to the loss of muscle bulk. ) I need some support from my MFP friends! When I started on this weight loss journey I decided I needed to step up the exercise. I have been walking everyday but it is so painful that I need to find another option. My doctor suggested biking and/or swimming since more low impact. I am considering the biking option as I am not comfortable getting into a swimsuit at this time. Does anyone out there use biking as their main exercise? What kind of bike? I do not belong to a gym at this time but will probably join over the winter since you can't do much biking outside in MN.

Thanks for any ideas you have and would love to add some friends that are going through the same thing I am.

Replies

  • DancingAnnie
    DancingAnnie Posts: 2
    I have CMT and find exercise to be a challenge as well. For me, the best exercises are in the pool, walking, and the elliptical. I would like to lose 25 pounds, though I'd be happy with 15. I can be your weight loss buddy, if you'd like.

    If you'd like to connect with more people who have CMT, you may want to check out CMTUS and CMTAthletes on Facebook.

    https://www.facebook.com/#!/groups/cmtus/
    https://www.facebook.com/#!/groups/cmtathletes/
  • becky123456
    becky123456 Posts: 75 Member
    Hi -- Although I have never been formally diagnosed with CMT, all the signs point to it for me.. Yes, the deformed feet complete with HUGE arches and hammertoes.. I only fit in a girl's size 4 EEE shoe so finding something to wear to work is a challenge.. I have always had this, since birth, I guess, and since I am getting older now, my balance is terrible. I walk the dog for about half an hour everyday, and try to use the elliptical, although I have gotten lazy with it lately.. It's getting really hot and humid out now (we live about 40 minutes south of Washington, D.C.) but I do love the hot weather and sweat that comes with D.C. summers.. The dog doesn't love it though! He belongs in MN with you because he loves the snow.. Keep trying, I know what it's like, for sure.. Hope we can encourage each other and glad you found me! Becky
  • 6566tess
    6566tess Posts: 39 Member
    I have not been formally diagnosed either but my Doc says I have it. As you know to get the official diagnosis you have to go through genetic testing. My doctor sort of told me the cost etc...with the genetic testing isn't really worth it as it is what it is. I have the feet issues as well and walking is just so uncomfortable. My lower legs are soooo tight when I walk that after about an hour of walking I can't even feel my feet. I tease my children that if they push me over I doubt my legs would have the strength to get back up so they would just have to leave me. Glad to have found a few people on MFP that know what it is like. Do you know of anyone in your family that has CMT. I do not and none of my children have it...thank GOD!
  • DancingAnnie
    DancingAnnie Posts: 2
    My dad and uncle have it, and my grandmother did, but fortunately, I'm the last in our family to have it. I'm still getting used to this site, ladies. I'll keep trying to figure it out. :embarassed:
  • shannonlhays
    shannonlhays Posts: 1
    I have CMT as well! I like swimming but as that is not always possible I like to do jillian micheals workouts - slightly modified to fit my limitations - and yoga and walking. I think the most important thing I can do is keep moving but at the same time I listened to what my body needs because sometimes it isn't exercise it is rest. One thing that has REALLY helped while working out is AFO's. I was against using them for a long time because i didnt want to look all crippy but now that I have tried them I swear by them, especially while exercising. I also am trying to lose weight - I gained 60 lbs randomly like two years ago and have taken 20 off but have another 40 to take off.
  • 6566tess
    6566tess Posts: 39 Member
    what kind of AFO's?
  • MichelleV1990
    MichelleV1990 Posts: 806 Member
    If you find a doctor who is affiliated with the MDA, it shouldn't cost you to be tested. I found this out after (of course!) I went to the Cleveland Clinic for a diagnosis. When I got the bill, I thought there was a misprint....$10,000...but I found out it was no error. My insurance covered all but $900 of it, but geeze! They took about 7 vials of blood. Since then, I've discovered some doctors who specialize in MD right in our local hospital. My youngest child is showing signs of it, which breaks my heart. I have 3 children, and am very thankful that the other 2 appear to be o.k.

    I've gotten out of the groove of exercising, and as you know, it's a lot trickier for those of us with CMT. I've found that the Walk At Home videos by Leslie Sansone, are what works best for me. In the beginning, I had to hold onto something, as my balance (even while wearing my foot braces) was no good. The more I exercised with Leslie, the steadier I became. After a couple of weeks, I didn't need to hold onto anything. It has been at least 2 months since my coworkers and I have worked the videos, but we tried them again the other night. I didn't get through all 5 miles; in fact, I only walked just over 1; but I didn't need to steady myself, which made me so very happy! I also lost 23 pounds in about 3 months. WalMart carries Leslie's dvd's for about $9.99, which includes a resistance band. Good luck! Let me know if you try one of Leslie's dvd's.
  • pkfrankel
    pkfrankel Posts: 171 Member
    Cycling is a great way to burn calories without pounding your body too hard. Visit your local bike shop for the best bike for you.
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