Thank you very much!
SK said:
I'm with you on that one - exercise or walking for long periods of time really wears me out. It's hard some days but I agree that a good attitude really helps! Thanks Dave :)
Dave Cummings said:
I find that exercise for me doesn't work as well as with other non-CMT people. For most it makes them feel better but it just wears me out. Keep active, of course, but a workout as such isn't good for me. I wish, however I had done more stretching exercising to maintain my flexibility. I am 72 and have had a very active life playing sports, golf well others not so much. A good attitude is your best weapon and wield it mercilessly.
Dave
I wish the best for your son, I hope he is doing well! Wow that's really interesting and I would love to know how that went because that may be something I'll have to look into - I have really horrible balance as well. Thank you!
Mom of 3 year old with CMT said:
Hi Sara, my 3 year old son has CMT. Classic high arches, hammer toes, fatigue, wide gait, very very poor balance, can't walk up or down steps. Before I realised he had CMT, I put him on L-Glutamine, Selenium, B12 and Acidophilus. This was due to a blog a read from a mum who's child was diagnosed with Duchenne muscular dystrophy. Anyway, I notice a great improvement in his balance. I have taken him off it in the last 4 weeks and I believe he has gotten worse. I am going to do a video of him walking and measure his calf, then put him back on the supplements. I will revisit it again in 2 months time and see if there is any improvement, decline or if he has stayed the same (which would also be a positive too). I will let you know how we go.
Thanks for the tips! I am glad to hear that exercising has helped you :) I have trouble with stairs as well but wasn't sure what leg exercises would be best to help with that so thank you!
Melinda L said:
Hi Sara. I have found that doing leg presses are very helpful for me. Before I was diagnosed and started doing physical therapy daily, I couldn't walk up stairs without pulling myself up using my arms. I even had difficulty just getting up off of the couch or up from a chair. But after months of doing leg presses and treadmill I can walk much better and climb stairs without too much trouble.
Over the winter I took a break from exercising, just staying in to keep warm, since the cold really hurts my hands, and I am back to having trouble with stairs and my husband helps me up off the couch again. So back to the gym for me. Just be careful not to over do it. Don't do anything that hurts or pulls on your arms. Pool exercises are great for CMT'ers, water aerobics, swimming, biking.
Not sure about protein powders benefits. Found them to be too expensive to try.
Thanks for the advice Tami! I hope you are doing well!
tga said:
l attempt regular visits to the indoor pool for water aerobics. 2-3 times a week when it's open at the local college. l do as much activity during the 50 minute secession as l can.
l ride a stationary bike 5-7 times a week for at least 17 minutes, that's about as much as my rear can take without going completely numb. lf l skip more than one day or sometimes even one day the fatigue in my lower legs is terrible.
l have been to PT a lot since July 2012 after hip surgery and to hopefully prevent shoulder surgery.
Stretching at least some daily is a huge help. Walking too much is torture for my feet. Hoping to get that straightened out.
There is absolutely nothing about any type of exercise that makes me FEEL better. But if l don't l do feel worse for sure.
Good luck to you! ~Tami
Yes I know the feeling. Other than my family - sister, dad, uncle and my grandma (apparently it runs strong in my family) I don't know anyone else and yes having someone else around like a support group would be wonderful.
As for the calf muscles I am wondering the same. Mine were always smaller but when I had my multiple surgeries and had to have casts on my legs I noticed a huge decrease once I got the casts off. It is a big insecurity for me and I know what you mean - pants and long skirts/dresses for me with basically no options for shoes other than runners or boots.
Thank you for reply and I hope you and your family are doing well!
Carm said:
Yes, it is hard! As I always thought I was the only person on the earth to have CMT. I haven't met anyone in my area nor near vicinity. I wish I would because a support group would be nice. It is so important to stay positive, but some days you just can't.
I am looking for someone who can tell me if working the calf muscles would build or maintain the muscle???? As every neurologist has told me "no", but other holistic healers have told me "yes". This is one of the many things that bother me being a woman. I never wear shorts, dresses, skirts, because of this. I will only wear long dresses...I can't wear any kind of shoes, heels forget it, no ankle support forget it too!
I will say though, that a positive attitude helps. Its all about "Law of Attraction". My son also has been diagnosed and he is 14, haven't tested my other 10 year old. I was very sad when he was diagnosed, but there are worse things out there that I tried to console myself in this way.
Thank you so much for the reply. Walking and riding a stationary bike are my main sources of exercise at the moment but like you said just got to take it day by day. Hope you are well!
braylin's gramma said:
The important thing that I have learned is just keep moving to the best of your ability. I am 57 and have trouble with balance so I do bone strenghening exercises 3 times a week in the building where I live. Some I can't do standing so I sit and improvise.....Walk as much as you can tolerate that is what I have been told is the best thing for us. But if you can swim...then swim. If you can dance....then dance. If you can ride a bike......ride as long as you can. Just keep moving as much as you can tolerate.
You may have days that you feel really strong and have lots of energy and want to get a lot done. I have done this and couldn't do anything for the next 2 days so it is good for us to pace our selves. It is a hard road but ir we just take it day by day we will do fine.
I am not familar with the L-Glutamine so hopefully someone here will be able to help you with this.
Have a wonderful weekend and make the most of every day! :)
That's so nice to hear that you didn't let it get you down! Thank you so much for the reply and that brace definitely looks like it would be a huge help :)
Terry George said:
I have had CMT all my life but would not let it get the best of me. I joined the Canadian Armed Forces when I was 18 and served for five years. Then I managed to get a job with Crash Fire Rescue whereas I served 28 years. Yes I had my difficulties. For me I found that lots of weight training, braces, and a positive attitude helped me succeed. I wear braces on both feet now to stop my drop foot and ankle roll. What a difference I can walk 4 or 5 miles now with no problem. I squeeze a small soft ball constantly while walking and this helps my hands stay stronger. Yes this is a very bad disease but life goes on I am 64 years old now and I ride a motorcycle. mud bogging is a favorite, and I ski.....I bought braces called Blue Rockers and they have changed my life. They are made of Carbon Fiber and not only do they stop drop foot, they give me great balance and my legs do not get tired. They are expensive but there are organizations that will help cover the cost. Picture of my foot braces included.
Glad to hear you can still dance and that is a great way to go for walks! :) Thanks so much Karen and I hope you are doing well!
Karen said:
Hi Sara! This disease isn't much fun is it? I was a runner and into working out a lot . When my CMT got real bad I had to quit work,no more running etc.Well, I always danced,so I still dance and do floor exercises for core strength etc. I also realized I could walk if I pushed a stroller. So,I put my adorable little ShihTzu Bella into the stroller and away we went. I worked up to 15-18 miles a week! She loves it and I can walk like I used to. I try to get exercise in anything I do! Just keep a good sense of humor through all of this. I had a heat attack in Sept. Four bypasses. Another hereditary disease! I got them all. Anyways,never give up! Don't let this dictate your life! Try and try again! Good luck to you!
Sorry to hear that but that is awesome that you are still so active! Yes, sneakers or boots are the only things I can wear so I know the feeling. I get so excited for the cooler weather because trying to find something that I can actually walk in during the summer heat is hard. Thanks for reply Alex! :)
AlexS said:
Hey Sara,
I'm 31 now, found out I had CMT two weeks before my 18th birthday (not the greatest present).
I work out 5-6 times per week at the gym, 45 mins cardio of bike and/or crosstrainer and 45 mins of weight training.
I've always been an active person so I think being fit and healthy means I don't experience the tiredness as much as some people with CMT.
I either wear normal sneakers with leg braces or I wear nike hightops (canvas ones that can be done up tightly around the ankle) which were a life changer when I found them as it means I can wear long gym leggings like everyone else at my gym rather than baggy trackies to would hide my brace.
I'm pretty lucky that I can still wear wedge heels (as long as I don't have to walk too far or fast) which is great.
I love winter as wearing boots makes walking easy and there's plenty to choose from.
L-Glutamine is in the protein powder I have daily but I don't take it as a separate supplement so I cant really comment unfortunately.
Good luck.
Alex :)
Hi all you CMT'rs out there, hope you are all well. With the cold weather here, I have less strength! Me too only like the cold weather due to wearing the fashionable boots. Can walk way better with the boots...but come spring and I slip back into runners or summer shoes, ankles feel week and it takes me a while to get walking with stability again.
Ok, anyone out there heard of "triple fusion" in the ankles????? My acupuncturist told me about it cause he knows someone in my area with CMT and this individual is going to have it done, trying to connect with her as never thought there was someone in my area with CMT.....
Carm
Hi Carm,
I hope you don't mind, but I copied and pasted your reply with question and made it a discussion for all to see. Hopefully you will get a better response if everyone sees it!
Take care,
SK