Bad CMT Exercise Advice

[@cyndimichener]

I'm 54 and have heard this all my life (I was diagnosed at age 4), as well as that exercise is harmful to people with CMT. I started exercising 5 years ago because I was alarmed at how weak and overweight I had become. Now I'm mad about all the years I wasted listening to people who didn't know what they were talking about! I wish I could show you my own biceps. :) No one is going to mistake me for a body builder, but like you I have improved my strength, stability, and stamina. Regular exercise changed my life for the better. Was it hard? Hell yeah! Worth it? Same answer.

[@BethanyMeloche]

That makes me so mad for you! But also, YOU GO GIRL!! ❤️ Imagine me there fawning all over your own biceps! :-)

[@miraduraku881]

Thank you for posting this. As someone that has CMT in my mid 40’s I have been able to build muscle by exercising it has increased my mobility. Never give up and keep exercising!

[@BethanyMeloche]

This makes me so happy! A round of applause for you!

[@catherinecorralespalma3382]

Although our disease is very common, there is a lack of information about it! For years, many neurologists and phisical therapist told me to do cardio exercises, but I realized that I was just burning my muscles. So, now I just lift wights the way you told in the video and have a protein and carb high diet. With this the change has been very positive! Thanks for sharing these life changing tips to the rest of the community :)

[@BethanyMeloche]

Thank you Catherine! I'm still a fan of getting in some cardio, but definitely not without targeted strength training too. I'm so glad you're getting better results! ❤️

[@Deathmasck]

Hi Bethany, i have CMT, and i gained some muscle in my showlders, back, chest, in general in all my up side of my body. all this araund of 1 year and 6 months, y have very happy. Yes we can to be very strongs as we want. Gretings México and good vibes forever. ^^ ammm... Sorry for my English, is bad.

[@BethanyMeloche]

That is FABULOUS! Go you!! ❤️ Greetings and good vibes from London... and your English is great!

[@waynevincent5941]

I go to the gym 3-5 times a week. I ride a recumbent bike (less distance to fall to the ground🤣) for my cardio. I also have an upper body regimen as well as a lower. The owner is aware of my CMT condition and has helped design a workout that benefits me as well as push me too. Dont let ANYONE tell you what you can or cant do. Fight every day.

[@BethanyMeloche]

I so love to hear this! ❤️ That is fabulous Wayne. Seriously, good on you. Thank you for sharing :-)

[@dzieckojutuba]

Same here I go to the gym 3 times a week, and it has really helped. When I take breaks from the gym is when I feel it…

[@DivaandtheDivine]

😁😁PREACH IT GIRL!!!!

[@fabiopires6072]

Hi Bethany. I'm 40 and I have CMT. Last year I finally found a physical therapist who knew how to treat CMT. I was really surprised. With her help, I was able to develop a little more strenght and a little more muscle mass in my hands. I thought that at best the exercise would prevent further loss of mobility, but I actually build a tiny bit of muscle. So it exceded my expectations. The problem is that the exercise routine is (at least to me) really unpleasant, exhausting and frustrating in the short term, so I dropped it. Your videos are inspiring because make me think more about the long term. So thank you. I will try again.

[@cmcd1008]

Get back at it, don't quit.

[@vinitthakur6168]

Yeah done quit

[@crystalneathery3733]

I also have cmt and I live in the gym and have since I was 23 I’m 50 now and very very fit. When I was younger I was extremely strong. Now that I’ve gotten older when I went to dr yesterday I told the doctor I lift heavy and have great muscle tone u can for sure tell I workout. But yet I can’t barely carry groceries in the house now and I thought I was strong. The doctor told me it’s the cmt I can have muscle but cmt I guess is making them not strong. Blew my mind. Now my right calf muscle it will not grow no matter what. Yes exercise is the best thing ever and swimming. I seeing the older I get the worse mine gets it’s really taken its toll on me. I’m emotionally ;physically.mentally,spiritually wore out from it the last 6 months cause it’s progressed that much. But I keep going. The gym is a must for me!!! It’s a tough disease cause in most ppl u can’t see it . But when u walk u can see a limp. It’s pain 24/7. Exercise is a must with cmt. Start light and stay consistent! Swimming is even better. Get one of this waste joggers floating things find a pool and jog around the pool with it around ur waste. It’s great.

[@phildee8740]

Well done I go to the gym and take protein recovery drinks to help my muscles recover faster, your film is great motivation to keep going and not give up. Thanks

[@amandahallock9708]

Thank you for the gift of HOPE. I too have cmt. At 65 y old, my mom and her mom were both wheelchair bound as doctors claimed there was NOTHING to be done. Not me. Work hard and again, thank u so much.

[@costi1968]

I have CMT Type 2 (Mitochondrial mpv17) Months ago I started working with dumbbells of 4 kg and i build up to 5 kg. Now i do push ups 60-80 a day and i really feel the diference. With the legs is the same I started doing exercise same time as dumbbells and my walking has improved of course with the help of cratches. I love doing exercies and I encourage anyone to start doing them🤗

[@cmcd1008]

Me again, type 2 CMT, late in life onset/diagnosis. I used to be a gym rat, those days are over now, BUT my neurologist flatly informed me that lifting weights was out of the question and that I would soon need a cane to walk. I plan on trying to prove her wrong for as long as possible. The same doctor tells me that other muscles can compensate for the ones that have checked out. Sooooo, why wouldn't I train the ones that are still on the job? Something is almost always better than nothing. And, total side note, if anyone is worried about balance issues ( no reason for saying so , ahem ) how about isometrics, where one isn't moving while "under load"? I'm pretty sure the world deadlift record is safe with people other than us, but no reason to just lay down and die.

[@BethanyMeloche]

Your neurologist's comment makes me angry on your behalf. That advice (don't exercise) was common 30 years ago, but they should absolutely know better by now. "why wouldn't I train the ones that are still on the job?" YES! Exactly! If you use Facebook, check out the groups CMTActive and CMT Athletes for some like-minded folks! And best of luck on your journey, I'm rooting you on!!

[@hazelmaguire126]

Hi I have CMT 1a I am a wheelchair user and have hemiphlegia of the diaphragm.I transfer from my wheelchair with a banana board which was becoming difficult. I have been going to a gym with a personal trainer twice a week, we use the resistance bands, low weights for bicep curls, boxing against my trainer who has the pads all whilst seated in my wheelchair.I feel more confident, stronger and find most things easier than before

[@BethanyMeloche]

Wow, go you!! That's fantastic!!

[@morrisa5797]

Wonderful video! Great job! 60 years old with CMT. I started lifting 10 years ago. Last year I won my division for Bench Press at IPL world championship. Still yes it is hard to get a glass of water. My advice. Bethany join a gym. A gym with really strong people and lots of equipment. Get a trainer to program you with normal exercises. Wear the braces and work on deadlifts even if it is just 5 lb barbells. We have a nerve disease. Not a muscle. Go Bethany!

[@BethanyMeloche]

Wow, that's amazing! Congratulations on huge achievement!! I'm curious if you have any tips on lifting weights with hand weakness? I struggle holding onto hand weights more than a couple lbs, even though my upper arms are capable of lifting more.

[@morrisa5797]

@@BethanyMeloche I have the same problem. There are several types of lifting straps. The one that works best for me and my fingers is called Cobra Grips. Good for pulling straight down or straight up. Also carry a fold away multi tool with pliers to do buttons and stuff. Not much help with drinking glasses. I use a plastic measuring cup with a handle for drinking. If I drop it there is no breakage. And I am always dropping stuff.

[@johnholman750]

THANKS, Bethany....you are awesome to share your story and possibilities. Inspirational!!! On a bummer note for me, last year was probably my last for downhill skiing. I was an expert skier and was having issues last year. Sunday, I went out and struggled to make it down the hill once. It was a real eye-opener for me, as I am a recent diagnosis of CMT in my late 60s. I have been going to the YMCA for balance, strengthening and flexibility classes for about 3 months now. Initially, I struggled with many of the balancing exercises in particular. They have helped immensely!!! I also bought some walking poles and they have been great....I just did a 4-mile hike with them last week. Being proactive and doing something to keep CMT level is my goal now. Any plan is better than no plan!!! So all you CMTers...get moving as much as you can...it does make a difference. Best to all of your successes. Bethany....you go girl....Thanks again for your positive encouragement. John

[@adambellcorelli]

You are ripped! Keep building those pythons. (So proud of you for doing the hard work and for sharing your awesome message)

[@BethanyMeloche]

Haha, THANK YOU!! ❤️

[@andrewperkins4047]

Me too. Watching your videos and knowing things I have experienced, I would suggest you need protein, fat, and especially cholesterol! These are important to build muscle and promote healthy nerve / myelin recovery. When you become more active you need these things to build muscle instead of activity actually causing muscle loss / consumption. Lessons learned by me. I am in the best shape I have been in 30 years or more. You can rebuild and you need the right bricks. Thanks for the encouragement!

[@marycolunga6005]

Thanks a lot Bethany for your advice! I was diagnosed in 2012, I'm 60 years old and the rest of my life I did not know about this condition. I'm going to start lifting weight.

[@BethanyMeloche]

Yay I'm so glad!! Start light and include rest days :-)

[@quirkychelle]

I was into body building at one point and am now called an anomolly bc my muscle tone. Mind you, the nerve issue in my spine was furthered due to my obsession, but know that weight training helps. It's the nerves that are the problem. But yes, CMT is draining because we take much more effort to do "normal things".

[@johncurd2713]

Good job girl !! Keep the Fire !! Just keep moving, and they can't get you !

[@heikkimesterton5516]

Minä en voi nostella painoja ollenkaan koska saan siitä kovia kipuja käsiin ja selkään. Eikä kyse ole maitohappokivuista

[@DF1.j]

Damn same thing always people say no you cant get it back or at least strenthing it Im 17 years old right now and im dealing with foot drop since 4 years from now acculy all leg moscels they died speciality down the knees and im starting to have hand weekness since 2 years and im trying to keep exercising

[@swanzilla1982]

I didn't see the original post by the lady Was she asking after muscles become atrophy can they be built up again like Lower legs and hands ? I have CMT but don't visit any of them sites To depressing I only stumbled on your videos while looking for something else all together different.... How I live might be different then the next person and that's alright cause we're all different My big belief is you don't use it you lose it

[@raylawrence7732]

I'm with you 100%

[@lisadetata2075]

Love this, thanks so much

[@BethanyMeloche]

Yay, so glad you liked it! ❤️

[@tannerbasso3224]

Hi fellow cmters I love this video I’ve struggled for the last 10 years with my CMT1a also a type 1 diabetic for 27 years. no where near the amount of time some of all of you have I know but it’s been difficult I used to be a very active young man snowboarding downhill mountain biking skateboarding long boarding And I was a carpenter but obviously that went out the window lol.. in the last few months I have found myself becoming way to reliant on my AFOs (full leg knee down shell strapped on the shin) and it’s really depressing me. Any doctor and specialist I have ever seen has told me I can’t build muscle and if I workout too hard I will progress myself and this has been a very hard struggle because I can still lift fairly heavy but I’m afraid to really push myself with it and working out my calves I’m afraid I will burn out what is left of my muscle can anyone maybe expand on that will I actually burn through what muscle is left or is it just doctors treating me like a text book case?

[@susanmay3199]

Bethany-although exercize is recommended for those of us with CMT, what you are saying is somewhat misleading. you cannot rebuild affected muscles.

[@BethanyMeloche]

Hi Susan! My point is, what does "affected" mean? I'd argue that saying "affected muscles" can never be rebuilt is dangerously misleading. My whole body has been weakened by CMT. Muscles in my arms, muscles in my legs, and hips, and core, and neck, and, and, and. The thing is... they are weakened to varying degrees, and from varying causes. Some have lost all innervation. These, of course, can not be brought back from the dead. (RIP) But others are simply weak due to deconditioning, loss of mobility, altered gait patterns, etc. And, many of them I have been able to successfully - and quite noticeably - strengthen! I've seen so many CMT lives changed through exercise and activity, mine included. My aim is to highlight some of the nuance around what I think can be very discouraging advice, albeit well-meaning. It may be that in the name of trying to keep this video to 5 minutes, I didn't fully articulate my point!

[@diannadav2585]

@@BethanyMeloche you are absolutely correct! When I am serious about exercising my calves begin to strengthen and even become more developed with some noticeable muscle...if i miss a few days though, they quickly decline. Consistency and good eating habits, help. I hate the fact that I have been told, read, and seen over a million times that I would never be able to build my muscle again. They might not look as good as they did 20 years ago, but I am very happy that the people were wrong.

[@enriqueguillen1597]

Have you tried a physical therapist?

[@BethanyMeloche]

Many! Some better than others :) A brilliant one is a treasure!