CMT (Charcot Marie Tooth) & Cycling



Lynnlemone

Lynnlemone

New Member
Feb 14, 2014
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I am a 65 year old healthy male with CMT. This is a inherited nerve disease which appeared 8-10 years ago. I bike 75-100 miles a week. I completed LOTOJA, 206 mile race in one day in 2012. Logan, Utah to Jackson, WY.

I have trouble standing on my pedals anymore because of the loss of my calf muscles and top of my foot. I am not quitting. I want to do LOTOJA this year, again.

Need advice on how I can solve this problem.

Thank You,

(Mr.) Lynn LeMone
291 East 140 North
Lindon, Utah 84042
C 801.824.1751
 
Lynn, I am 39 and have been racing bikes with CMT since 1990. I am a 2 time Paralmpian and medalist and now working full time as a cycling coach. I cannot stand up on my pedals anymore under anything other than relaxed conditions. I just stay seated and stand for a bit whenever I can to stretch and move around. This means that in a 30 minute - 2.5 hour race I ma not stand at all, but it is what it is.

My biggest concern for you is doing a 200 mile event. That is extremely hard on a body and everything I've see, experienced firsthand, or heard from anyone indicates that this is something that should not be taken lightly. I would never recommend that a coaching client with CMT do this ride.

A few of us have found high intensity and high volume training and racing to exacerbate the deterioration of CMT. You get tired and never get back from it. Doing a century is one thing, doing a double is more than double the stress.

If you just have to do this ride, I'd strongly recommend training allot more than 100 miles/ week. An event like this is possible, but be prepared for some very un happy effects. You may not have any problems, but you may experience some significant loss of strength and fatigue that you may never really recover from. Go into it knowing what may happen.

I have been struggling with retirement from racing for several ears now and I'm fairly sure this will be my last. My body just won't do it any more. My legs are loosing strength and I am exhausted from a 3 hour training ride. Sometimes an intense 45 minute ride is too much, and sometimes a 3 hour easy ride will take 6 days to recover from.

I hate being the voice of doom, but 200 miles in a day is hard for anyone let alone someone with CMT. LIke I said, if you want to do it, go for it! Just make sure you are ready.

There is no reason for you to quit riding, in fact I think something like cycling is necessary, just be smart.

Anthony Zahn
 
Anthony, Thank you for the advise and caution. Do you use any orthotics when you ride? And, does cycling help with your CMT? I feel more comfortable riding a bike than walking. I use AFO's walking but not riding. Thanks Lynn
 
I tried orthotics on the bike but they kept breaking, so I just use some custom fit shoes. I had some fully custom made shoes that were great but they were getting old. I now use Bont becuse they have a bathtub style sole that wraps up around my foot rather than being a flat plank under it with a soft upper. They are also heat moldable for fit, which is super nice, though most good brands now have a model that is. For CMT athletes the soft uppers tend not to have enough stability.

I have some AFOs that I use when I know I'll be walking around a bit, but usually just try to avoid walking as much as I can.
 
Thanks, again for your comments. I did complete LOTOJA in 2012, the 206 mile road race in one day. It took me about a week to recover. I think I have one more in me. I will do century rides to test my legs and endurance. Do you find hard rides help or hurt you with CMT? Thanks. Lynn
 
I have a very hard time recovering from hard rides and I think it does do long term damage, but cant' be sure.

Anthony
 
I am new to this forum and have recently been diagnosed with CMT. My problem isn't so much cycling at least on easy rides, but when I come to a stop my leg buckles when I put it out to hold me and the bike up. My current plan is to move the cleat to the mid-foot location. This will relieve some of the fatigue in my calf. I am thinking about going to longer cranks to get lower to the ground so that I can stop more flat footed instead of dancing on my toes. Does any one else have some tricks they use to make getting off the bike less of an ordeal?

Thanks
 
Hi, Lynn. I am also a 65-year old cyclist with CMT. First symptoms occurred when I was about 58 with weakness in one leg when I stood to climb. I gradually lost the ability to stand on the pedals, but could still climb well while seated until age 63. By age 64, I was having trouble climbing due to the weakness in my feet, calves and one inner thigh, and was finally diagnosed with CMT. I got custom-made cycling shoes from Rocket 7 with mid-sole cleats and extra depth for my custom-made orthotics, and lowered my seat by 3 cm to compensate for the mid-sole cleat. This gave me immediate relief and an improvement in climbing, but it only lasted about one year as the weakness in my legs progressed. I now pretty well stick to flat terrain; climbing only relatively short hills ( a few km) at up to about 8% in low gears (e.g., 28-30 gear inches). My lower legs tire quickly when climbing and don't recover for 2 or 3 days after a 2-3 hour ride or hike.

Hope this helps.
 
Having CMT, does anyone do any PT to help with cycling? Everyone has different conditions and is at a different stage of CMT so, has anyone found any ways to keep what you have for as long as you can?

Thanks,
(Mr.) Lynn LeMone
 
Hi, Schneiderrd. I have mid-sole cleats and lowered my saddle by 3 cm to compensate. I put my right foot down when I stop, which is not a problem as my right leg is the stronger of the two. My dismounting problem comes when I try to balance on my weaker, wobbly left leg and swing my right leg up over the bar and saddle - not always the most elegant dismount. However, I also have a Bike Friday road bike for traveling, which has a single low beam instead of the usual triangular frame. It is much easier to lift my right leg over the low beam to dismount. The other advantage of the Bike Friday is that it has 20-inch diameter wheels, which eliminates the toe/front wheel overlap that occurs with mid-sole cleats and 700C wheels. The overlap is only a problem in low speed, tight turns, when doing a u-turn or negotiating a chicane on a path.
 
Hi, Lynn. I have been seeing a Physiatrist (Doctor of Physical Therapy) since I was diagnosed with CMT about 2 years ago, and she does not recommend any PT (e.g., weight training). She says that I have limited energy in my weakened legs and to spend it doing exercise that I enjoy (biking and hiking), rather than spending it on weight training, which is not going to help anyway. She also stressed not over-doing exercise to the point of muscle cramps and soreness that lasts more than one day, for fear of doing permanent damage. The best thing that I have done to keep going are the mid-sole cleats, which I discussed in previous posts. Their benefit in terms of speed and climbing ability only lasted about one year, but I would be even worse off now if I didn't have them.
 
Not sure that this forum is still active but here goes. I too am 65 and have been dealing with CMT for several years -- this year it has finally affected my cycling along with balance and fatigue issues. I decided to try an over the ankle moutain bike-type cycling shoe and it has made a significant difference in my enjoyment of cycling. I feel more secure, seem to have more power and can stand on the pedals for a lot longer. I have not seen any mention of this approach to helping cyclists with CMT - or even general footwear choices. Hope this might give someone else some relief.
 
My family has the X-linked form of CMT ("CMTX") so my father (and many of my cousins) have it, but it passed me by. Nonetheless, he is very active in research to create an artificial calf like-orthotic which is still in development.

They are also doing drug trials on the autosomal recessive form of CMT. It doesn't help my family, but might be applicable to your situation. http://atyrpharma.investorroom.com/...s-A-Key-Signaling-Pathway-in-Neuronal-Biology
 
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