If You Have CMT, Stretch Your Fingers!
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- เผยแพร่เมื่อ 14 ธ.ค. 2019
- Hi! My name is Bethany Meloche and in this video I will tell you WHY you should stretch your fingers if you have Charcot-Marie-Tooth disease, and demonstrate super easy stretches you can do ANYWHERE.
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website: www.bethanymeloche.com
learn more about CMT: www.cmtausa.org
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Keep on stretching, Bethany! I was diagnosed with Type 1A about 7 years ago, and I've found that keeping my hands active at all times of the day has slowed the progression immensely compared to cases I've seen. I play the drums, do lots of yard work, and do a lot of typing for my job. I also do very similar stretches at my desk. I can't believe your occupational therapist said that, it's very counter-intuitive! We should all be constantly strengthening and stretching simultaneously. Keep up the good work!
Thank you so much! I love hearing people's positive outcomes - it encourages me to keep up with the stretches!
"Well yeah, if that's what you want." Unbelievable. Why bother with OT or PT at all, if we only "want" to preserve function? Do these health practitioners think allowing other disease processes to progress "naturally" is also good? Diabetes? COPD? Cancer? Good grief.
I was diagnosed with rather generalized neuro-muscular weakness as a child. (I am 54.) In my late 20's, I was given the label Dejerine-Sottas, which is now clustered with CMT. I think it's because DS is no longer in the medical lexicon, but they have to stick us somewhere! LOL I have been encouraged to stretch my hands, legs, etc, but admittedly I am not very faithful. I hate my exercises and stretches, but that's on me. I canNOT believe you were never told to do stretches and you had to figure it out on your own. Good for you to speak up and speak out. Your OT needs a reality check or a career change.
Right?! I wish I'd given that response and had a longer discussion with her about this, but I was so dumbfounded at the time! I think I said, "Well, that's not MY philosophy." Hah.
I and both of my adult children have CMT Type 1c. My hands are affected more so than my kids. I use a stress ball every day 3 or 4 times a day and that offers me relief from cramps and tightening. I am so sorry a "professional" said those things to you!! You keep doing you, hon!! Blessings!!!
Thank you Charolette!! :-) Many blessings to you and your kids!
Me and my family have CMT2E. I enjoy watching your videos. People that don't have this stuff just don't understand.
Thank you so much for commenting. I'm really glad you enjoy them ❤️
Wow thank you for sharing this. What a closed minded outlook on your occupational therapists part. I was diagnosed with CMT1A this year and had a similar experience with a therapist... It seems many people think we are a lost cause and to just let this disease take it's natural course. I believe that we should give things our best shot. I researched a lot and I bought a finger/hand exerciser kit on amazon. I really like it and hopefully I can preserve some function in my hands. I drop things a lot, etc. I will add the stretches you demonstrated in the video too. Thank you!
Hi Heather! I definitely believe in giving our bodies everything we can for them to function at their fullest potential. I know a combination of exercise, surgery, eating right and losing weight has been critical for me, and given me back function I once thought I'd lost forever (maybe I'll lose it again, but I sure am enjoying it now!).
Wishing you the best! ❤️
It can be difficult to live with this disease
Appreciate this advice!!
Same goes for exercise! You are on the money with your vlog. Its about doing everything we can to looking after ourselves!
Yesss absolutely Ray!!
Thank you. I’ll do this on my 3 yr old with cmt. God bless you and Ty for sharing what the OT said to you. I felt like they were purposely not listening to my worries
Your little one is lucky to have such a proactive mom! x
I have been doing this for at least seven years Bethany and it has really helped. Thank you for sharing the video.
I'm so glad stretching has helped you too, Tracie! ❤️
Hi Bethany. I have CMT and my hands look just like yours. Thank you for the advice. It's good to hear it from someone who has experience.
So glad that you're here, Fabio, and that my experiences can help someone else! :)
Thanks for sharing! I’m so mad that that occupational therapist said that! I have definitely walked out of doctors appointments where they treat me like I’m just the disease and not a person. I’m so over crappy doctors!
Good for you for walking out and demanding better! Thankfully I have also found some incredible, angel doctors and healthcare providers - but it can take some searching! :)
Great video! I was diagnosed with CMT2a at aged 2 in 1995. Had awful OT's and Physio's throughout my childhood who had no experience with this condition. I'm in a wheelchair full time and have lost the use of 7 fingers now, it always makes me think how different life could be if i'd had great stretches & support. New sybscriber!
Hi Tasha! I'm sad to hear about your early-life experiences with PT/OT, but not surprised. Thankfully education is improving, but we still have a long way to go - if I can play even a small part in that, I'll be very grateful! Every person with CMT deserves education and proper care. Thanks so much for your comment and for subscribing ❤️
Gene therapy has been developed for the treatment of CMT type 2
We are the experts 💪🏼🦿
Heck yeah!
I have CMT and you keep going if it works for you and find another occupational therapist, just do it your way I don't have any help, but I live in the UK
Thank you! You may want to sign up for CMT UK's newsletters if you haven't :)
Um..I'm sorry, WHAT?! How...what....WHAT? This is literally how I'm reacting as you're telling me this story about what your OT said. DON'T prevent the disease from progressing??? I just can't....
Thank you. I had to fight to get my oval 8. My OT measured my fingers and gave me one. I have Ehlers Danlos and some other things {could be from the EDS-MCAS & Dysautonomia combo rhythm makes my fingers and feet lock up.. the splints are so very helpful. I have nerve impingements that I think causes my body to lock up. {still do not know what it is} Hugs and love. I am so sorry that you are going through this, or that anyone is going through this. It is sad enough that people suffer; but to have to fight for help too.. it is can be traumatic..
I have friends with CMT and a support group with people who could benefit from your videos .. thank you, I am sharing.
Thanks for your comment and support Tea :) I too wish no one had to fight for proper care. I'm so glad you find your splints helpful; I have oval 8s too and really need to use them more consistently!! I may show them off in a future video, since I think splints are great to use in conjunction with stretching.
Thank you for sharing and please let me know if you have ideas for other videos! xx
You have a right to be angry!! My Mom and Grandpa were really affected by CMT. I have it, but like you I stretch all the time and I exercise each day!
Thank you for the validation! I'm so glad you stretch too!!
Well, glad I don't have that occupational therapist.... Look at aikido wrist locks as a way of stretching the fingers/hands/wrists/forearms. Tim Larkin TFT simplifies that, some free videos on youtube. And more for the feet/ankles/calves, check out the Original Strength channel here as well. If I can figure out how to get paid by either, I'll do so, meantime, some free stuff I felt obligated to share.
Thank you so much for these recommendations, I will definitely check them out!! I don't know if you'd ever be open to filming yourself demonstrating some techniques you find helpful (I'm assuming you have CMT yourself), but if so I'd love to chat about how we can share that with the community :-)
I'm 14 and want good fingers so thanks
Stretch every day!! Whenever you think of it!
Hello. Im sorry for your experience. I never went to the doctor when i was a kid and i had mobility issues. I still can walk but my walking up the stairs and became difficult.
Im now 29. Learning that i might have cmt disease. I have all the symptoms. I did tests my doctor only told me the enlargement something something is Associated with cmt disease.
I wish I'll seen a doctor sooner my toes are crueled up i cant lift my left foot i can barely lift the right
This is very frustrating. On top of that my doctor didn't want to tell me anything or do anything.
So, i feel your pain. Thank you for making videos for people. Im lost and my doctor didn't tell me anything.
My hands not affected yet i was wondering if i could buy finger braces to keep them straight as well
I'm sorry for your experience as well :-( Especially your doctor not telling you to do anything!
Yes, finger braces/splints are great and can keep your fingers straighter, longer! I have another video on the oval-8 finger splints that I've used.
I've just seen this video. Thank you! I am also diagnosed with CMT. It was 7 years ago but don't know the type so far. By the way, if it's not a secret, when were your hands affected? How many years after first symptoms did it go on to the upper limbs? Wish you all health and thank you!
Hi Misha! Good question about my hands... hmm... progression is so subtle. I remember when I was 15 a neurologist told me that my hands were "obviously affected" and when I looked confused, she pointed out all the spots where muscles should be but weren't. So I definitely had some weakness by my teen years. But I don't think my hands started losing serious function until my 20s.
That said, it varies soooo much from patient to patient! My dad has the same type of CMT as I do and his hands are still in pretty good shape.
Wishing you health xx
@@BethanyMeloche, thank you for your answer! I've got CMT only for 7 years so I still don't know how it will work out on me in the future. Luckily, now everything is fine and hope it will be. Wish you and your family health!
You are very beautiful
What type of CMT do o you have I got
diagnosed at age 14 over the years I would do a push-up plank with both hands on the floor let my weight of my body do the
stretching for me
What a smart idea - and great strengthening too! I have type CMT1A.
Bethany has also written an awesome book on her CMT experience: amzn.to/39Vt6d1
Aww, thanks George! :)
Many years ago my mother's doctor recommended sitting on her hands while watching TV and that was effective as well.
Oh that's so clever Judee! Definitely going to try it! :) Thanks for sharing.
Hi Bethany, can you use your fingers in everyday life?
I have very little muscle tone in my hands so a lot of everyday tasks are more challenging (picking up small items, gripping something tightly, chopping food, turning a key, etc.), but I find tools and ways to adapt! I think people with CMT are forced to become very creative :)
I am a doctor but i have never seen such a disease.
Is it hard to live like that?
Doctors r very depressing and negative when it comes to cmt
They certainly can be! Luckily I've met some great ones, too :-)