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Sunday, October 7, 2012

Building Strength- CMT Affected Athletes

Richard & Ruth Cook

"You can't put a limit on anything. The more you dream, the farther you get."- Michael Phelps

Here is a question posted recently on the Team CMT facebook page by member Ruth Cook.
My husband, Richard, has CMT and was wondering if any of you have had any experience in increasing your muscle mass - especially in your legs, quads, etc.? We work with a personal trainer once a week and have seen his muscle mass improve over the past 2 years. Richard is AMAZING!!! He has completed 2 marathons and several 1/2 marathons in that time frame and has applied to Boston for the 2013 Marathon. Actually he started to cycle more recently - this weekend will be his 2nd Century Ride this season. Any suggestions on increasing his muscle mass would be greatly appreciated. Thank you.

I 've had the same question myself. Like Richard I am a long distance runner and will be lining up for my 2nd Boston Marathon this April.  Really hoping to see Team CMT member Richard at the start line as well.  Like Richard I am an avid cyclist.  I have also been doing weight training for 15 years and have seen both the activity increase my muscle mass and reduce my CMT symptoms.

I always say athletes with CMT are like one big science experiment.  We have to experiment to figure out what works for us.

Medical professionals are not much help. I asked the first physical therapist I was sent to after my diagnosis if there were some specific weight training exercises I should be doing.  He knew all about CMT since he specialized in nerve disorders. He did a search and found nothing. The 2nd PT I went to was at a sports medicine clinic. The head of PT there told him when he asked about specific weight training that she thought people with CMT couldn't run. He did come up with a couple of things that I will share later.

Athletes with CMT have to experiment to see what works and what works for them. I will share what has worked for me. Try it out and adapt it based on your results.

Training Plans
Because I am a triathlete I follow training plans for multi sport athletes. CMT affected athletes need the same training and conditioning as any other athlete.  I would suggest getting a good book on running or multi-sport training.
Athletes have to find the balance of training enough without training too much.   People with CMT expend twice the energy as those without CMT. Because of this I get very tired in races. I find I have to train extra time and distance.  Be careful if you try this. I have been a competitive athlete since I was in college. I have a huge training base. Any athlete has to work up to this slowly.

Cross Train
Even though I am a long distance runner, I only run about 3 days a week. Athletes with CMT have inflexible calf muscles, weak ankles and little flex in their ankles. We count ourselves lucky to be running at all. So don't push you luck and run every day. Alternate with activities that mimic running, like pool running, or an elliptical trainer. Even better if you are a tri-athlete since you have to train in three sports. Biking, rowing and swimming are all great low impact activities. I cut a minute per mile off my running time when I joined a local rowing team. I rowed for 10 years and was never ever injured.

Alternate Hard/Easy
To build strength you need to do speed workouts. These can be done running, on the bike, in the pool or all three.  These should be done only a couple of times a week. Alternate a hard workout followed by an easy day. Training plans for running and triathletes will outline the type of workout you should do. Easy days are perfect days to have an easy day if you are a single sport athlete.  See a sport specific training plan for ideas. For running these are track workouts, hill repeats and tempo runs.  A little goes a long way, but they can be a great way to build muscle mass and strength.

Rest is just as important as workouts. It gives your body time to recover and build back up. If you are always stressing with hard workouts you will get injured. Even elite runners and triathletes take days off.
Take a day off a week.  One week a month cut back your workouts  Cut by half if not training for an event, or by the amount on your plan if training for an event.

I also find I need more sleep then the average person. Be sure you are getting at least 8 hours of sleep. Sleep with when your body rebuilds. When I am tired I go to bed. I don't care what time it is. Listen to your body and give it sleep when it needs it.

To build muscle mass you need to get protein in your diet.  Have protein at every meal.  After a long help to build up muscles with a carb/protein combination. Chocolate milk is great or half of a peanut butter sandwich.  Protein bars are great snacks. I often eat one with a glass of milk for breakfast. Protein powers can be good mixed into milk or a smoothly. Protein is essential to build muscles.

Weight Training
Any weight training recommended for your sport (running, cycling, triathlete) is also good for CMT affected athletes. Again get a good book on conditioning for your sport.  "Training Plans for Multi sport Athletes, by Gale Berhnardt outlines strength training  A trainer can give you suggestions. I use free weights at home and do lunges, squats, arm curls, abdominal work, etc. A good trainer can give you suggestions and check your form.  I do my weight training on my hard workout days so I can have a true easy day on my cross training days. I do both upper and lower body on the same day. That is a little different than typically recommended. I lift weights about 3 times per week.  Runners World has some great weight training exercises on their web site.

My PT recommended calf raises. I do them with 5 lbs of free weights in each hand.Raise up on your toes and do 4 sets of 20.  I do two leg and one leg.  The one leg are good for balance. Stand near a wall or chair if your balance is weak like mine.

I also take the 5 lb weight and while sitting in a chair, but the weight on the top of my foot and flex my foot as far as I can. This is to keep my foot drop from progressing.

Yoga/ Stretching/Massage
CMT athletes have poor calf muscle flexibility.  It is very important to stretch. Yoga can be a great way to stretch and maintain flexibility. Yoga is also helpful for maintaining balance. I have seen a big improvement in my balance from yoga.  Take a class, because it can be helpful to have an instructor correct your form. Don't be discouraged if you are not as flexible as your classmates. Those of us with CMT just are not very flexible.

Getting a regular massage also helps with flexability and can prevent injuries or prevent them from happening by working out tight areas.

CMT athletes do have special needs, but the same things that build strength in athletes will also work for CMT affected athletes.  Try my suggestions and let me know if you have any questions.

Chris Wodke
Founder & Manager Team CMT

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.


  1. Hello Chris,
    I was diagnosed with CMT last November. I am 38 years old and had been competing nationally in brazilian Jiu Jitsu until suddenly things started to decline. I can still train and I can still hike and even backpack but I have much less stamina and the Bjj causes pretty significant foot cramping/pain/nerve pain. Backpacking is painful with anything but the lightest pack and I can hike a couple day of moderate miles before my feet start a full rebellion and I start to lose coordination. I've been trying to keep a positive attitude and figure out a balanced exercise regime that keeps me training Bjj regularly and still allows me to do the weight training/conditioning that keeps me flexible and from getting hurt. I have failed miserably this last year. I feel better and then push hard and then crash. I keep injuring my knees and the cramping in my feet keeps me up at night. Reading this above post gave me a much better idea of how I might plan in better rests. I've also researched a ton about alternative diets that dramatically increase nutrition uptake (no grain, dairy sugar; lots of nutrient rich and fermented foods/probiotics. Have you experienced any link or read any connection between CMT and alternative diets? What I struggle with most (emotionally/physically) is that Bjj brings the greatest joy to my life on a daily and sustained basis. Without it a regular part of my week I don't know how to function- and yet it is the one thing that causes the most physical pain. The positioning and use of our feet require regular dorsal flexion- which has weakened for me- I guess a common CMT symptom. I've taken it down a notch and stopped competing for the meanwhile but I want to know if Bjj could be good (maybe I'm building strength by using my feet so much?) or if it's causing so much pain I need to find another martial art that required similar focus and consentration but less foot use? Mostly I feel alone and discouraged by everything I've read about CMT doing "moderate" exercise and gentle activities like yoga and Thai chi. I'm fine with yoga once or twice a week but I don't want to do moderate activities. I'm even OK not competing as it puts me at a much higher risk for injury which frightens me in terms of being able to recover my muscle mass back. I wish I could find even one other person who trains Bjj and has CMT to talk to. Is there anyone out there? Do you have any advice to offer? Thank you so much.
    Take care,

  2. Every one is different with CMT. Do you know what type you have? Vitamins and supplements may be helpful. There is a book called nutrients for Neuropathy that may be helpful. Also check on anti inflamation diet. That may help your body to cope better. I had good success alternating hard workout days with easy. So I run every other day and alternate with swimming and biking. A physical therapist might be able to give you advise. I know running in the pool helped to give strength to my ankles.

  3. Thank you Chris! I have type 2A "mutant"- whatever that means. My dad, my uncle, two cousins and grandpa have it. It has expressed itself pretty differently. Mine is late onset (no real symptoms until this past year at 38) and my cousins were early.

    I will look into the book you mentioned. Thank you! I was following the Wahls Protocol for a few months and saw a big increase in my energy but no change in symptoms otherwise.

    I think I find another person with CMT who trains Jiu Jitsu online and it appears she is also on the CMT team. I send you a personal email with the hopes of connecting with her! paving seems huge. Thank you so much for your reply!

    Take care,

  4. We are certainly all different but certainly wherever we are it can take it's toll emotionally.
    I am throwing everything at this which includes meditation, visualisation and certain dietary changes.
    I have also chosen to not listen to some advice as it pertains to energy and amounts of exercise. I spent 4 hours at the beach today doing Yoga, BJJ animals, pull ups, deep breathing and then a cold plunge in the sea. I find BJJ animals excellent for strengthening the legs. I have learnt that we must avoid all wheat, have a diet rich in probiotic foods and probiotic supplements. I was a Vegetarian for 35 years....mistake. I now make sure that I have chicken bone broth everyday. Vit' B12 orally or preferably injections, masses of vitamin C from natural sources. Vit'D orally and from the sun, kelp capsules, kerrygold butter and Ghee for the Omega 3's ...I avoid wearing shades when possible....Lion's Mane Mushroom in capsules have shown to regrow the myelin sheath....and finally when I get the £££$$$$ together I will immediately get Stem Cell therapy....and Ozone therapy! Good luck everyone...somehow we have to turn our negatives into positives....I remind myself how fortunate I am and that there are others so much worse off in a World seemingly gone mad...gratitude, gratitude.....Love...Steve