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How I Started Exercise with Charcot Marie Tooth

Exercise - Weights

About a week ago I posted an article, “Exercise Routine for Someone with Charcot Marie Tooth,” about my exercise routine. In the article, I mentioned that I started out slow with exercise, but I didn’t really go into much detail. There was some negative feedback from that article. Feedback like, “you’re prescribing a dangerous and potentially deadly lifestyle for people with Charcot Marie Tooth.” My assumption is that the people giving this feedback misunderstood the article. I wasn’t prescribing any sort of lifestyle. Instead, I was merely sharing my success story. I was not advising anyone to suddenly start an intense exercise routine without building up to it.

With that said, I’d like to describe in detail how I started out with exercise. It is my hope that this will show that exercise is not at all unhealthy for people with CMT. In fact, it is necessary for people with CMT to exercise. We must build and maintain our muscle in order to retain strength throughout our life. Otherwise our muscles and peripheral nervous system will waste away.

Read through to the end for Reader Participation. I’d really love to hear feedback and inspirational stories!

My First Exercise

Exercise - Bike

I began trying to be active about two years ago, well before I thought about changing my diet. I started with just bike riding and nothing else. Finally, I got a bike and attached it to a trainer. This turns it into a stationary bike, so I can ride in private. It was tough, I have to admit. I could ride for maybe 20 minutes before my muscles were too fatigued to continue. Instead of losing motivation because of this fatigue, I just kept telling myself that it would improve with exercise. The fatigue had to improve, right?

The fatigue did indeed improve. After about a week of riding each day, I could ride up to 45 minutes each time. That was a huge improvement for just one week! That showed me that even with CMT, I can build muscle and improve my energy. I just had to try, and I had to stop listening to all the discouragement out there.

The Slow and Steady Climb

Exercise - Slow Climb

I didn’t add to my bike riding routine for months, nearly a year. I had tried to be active earlier on in life, and I learned very quickly that I need to take things easy and build up. Having an injury with CMT can set a person back months in exercise. It was only when I was riding my bike up to two or more hours each day that I decided I could add more to my routine.

My Starter Routine

To start out, I lifted very light weights. I wasn’t about to compete with any body builders! To give you an example, here is a list what I did when I started out:

  • Bike for 1 hour
  • Wrist Curls – 10 lb, 2 sets of 8
  • Arm Curls – 10 lb, 2 sets of 8
  • Shoulder Press – 10 lb, 2 sets of 8
  • Chest Press – 15 lb, 2 sets of 8
    • Yes, that’s the equivalent of bench pressing 30 lb. Start out easy!
  • Squats – 2 sets of 8
    • No weights! And easy squats, not real ones. I squat down onto a low weight bench and stand back up in the squat position. Squat down on something as low as a bathtub rim, for example.
  • Calf Raises – 2 sets of 8

This routine might sound intense to sedentary people, but it isn’t. The weights above are light, so light that I figured I wouldn’t see any improvement at all. I had to start somewhere, though. Keep in mind that my “light” may not be your “light”. Start with a weight that is so easy that you don’t even feel like it’s exercise (yet). You’re just getting your muscles used to moving and being active.

Time to Climb

After a couple of weeks of doing this routine, the weights were so light that it felt like I was picking up an empty glass. I could honestly feel that my muscles were adjusting to exercise. It wasn’t as much that they got stronger as it was that they had become used to the movements. My muscles were ready when I told them to lift something, even if that something was light.

This told me it was time to move up in weight. I continued my routine, but I increased the weight by 5 lb, and I also added 2 repetitions to each set. My new routine looked like this:

  • Bike for 1 hour
  • Wrist Curls – 15 lb, 2 sets of 10
  • Arm Curls – 15 lb, 2 sets of 10
  • Shoulder Press – 15 lb, 2 sets of 10
  • Chest Press – 20 lb, 2 sets of 10
  • Squats – 2 sets of 10
  • Calf Raises – 2 sets of 20

As you can see, I also increased my Calf Raises repetitions to 20. They were just getting too easy, so I felt the need to increase. I want to emphasize that I’m listening to my body here. I don’t want to injure myself, but if something is so easy that it doesn’t feel like I’m doing it, it’s time to increase.

Recap of the Climb

Before moving on to current day, I want the time frame of how I built up my routine to be very clear. I started biking two years ago, and it took a year of biking every single day for me to feel comfortable adding strength training to my routine. Others may be different, but that’s how it went for me.

I started with light weights, so light that it wasn’t even exercise. I just wanted to get my muscles adjusted to moving more often. After I added light weight training into my routine, it took me a couple of weeks to feel like I could increase the weight to any significant amount. I increased the weight the smallest amount I could, by 5 pounds. No need to jump up to anything dangerous. I just steadily and slowly increased weight over time. Sometimes it would take me up to a month or longer before I could increase the weight again.

Current Day

Although I detailed my exercise routine in my previous article, it has changed up a little since then. I fast every other day now, and I don’t exercise when I fast.

I’m posting my current routine here as well, just for convenience and to show it has changed a tad.

Everyday

  • Wall Slides, 3 sets of 10
  • Prone Y’s, 3 sets of 10
  • Shoulder Dislocations, 1 set of 20
  • Foam Roller Back Stretch, 2-5 minutes of 30 second intervals

3-5 Days a Week

  • Cardio, 1 hour bike ride
  • Wrist Curls, 3-4 sets of 15
  • Arm Curls, 3-4 sets of 10
  • Bent-over Row, 3-4 sets of 10
  • Shoulder Press, 3-4 sets of 10
  • Dumbbell Butterfly, 3-4 sets of 10
  • Chest Press, 3-4 sets of 10
  • Lat Pullover, 3-4 sets of 15
  • Arm Extension, 3-4 sets of 10
  • Calf Raises, 3-4 sets of 20
  • Squats, 3-4 sets of 10
  • Sit-ups, 3-4 sets of 20

Notice that I still do my back exercises everyday. I moved the cardio to 3-5 days a week, and it’s only for 1 hour now.

Consult Your Doctor

Personally, I don’t believe any of this is dangerous. I believe people convince themselves that an active lifestyle is dangerous in order to excuse themselves from exercising. I say this because I used to do the exact same thing. Doctors and people with CMT told me exercise was dangerous, and I was happy to use it as an excuse to stay lazy, sedentary, and unhealthy. It simply isn’t true, though. Exercise is good for you, plain and simple.

With that said, please be sure to consult your doctor before making any significant changes in your lifestyle. Bear in mind that I have a team of doctors and a very capable nutritionist who monitor my progress.

Audience Participation!

Here comes the fun part! I’d like to hear the reader’s opinion on exercise, negative or positive. Also, I’d like to hear success stories.

Why don’t you exercise? If you do exercise, what convinced you to start? What do you do for exercise? Comment below, or share this article on social media along with your story!

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Exercise Routine for Someone with Charcot Marie Tooth

Exercise Routine - Weights

I cannot remember a time in my life before now that I had a regular exercise routine. After having over a dozen reconstructive surgeries on my feet during my early teenage years, my daily activity level plummeted. If I wasn’t working at a computer, I was reading articles or watching YouTube videos at one. This meant I was sitting for 90% or more of my day while barely moving. I gained weight, became overly lazy, felt fatigued throughout the day, and generally felt miserable. I had every excuse to be this way, though, right? After all, I had Charcot Marie Tooth and had endured countless surgeries on my feet.

All of that changed about a year ago when something snapped in me, and I decided to take charge of my health. I can’t really pinpoint exactly what it was. Maybe it was a feeling of coming to terms with my own mortality. I didn’t want to live half a life just because of laziness and use my disease as an excuse. I had to at least try, and I had to try longer than a week, longer than a month. It was time that I made a lifestyle change that I would continue throughout my life. It was time I started an exercise routine I could handle. To my surprise, even with Charcot Marie Tooth, I could handle a lot.

Next Steps Fitness Program

A local fitness center here in Sioux Falls, SD offers a program called the Next Steps Fitness Program. It is a medical fitness program that offers specific support for a myriad of ailments, such as: Cancer Fitness, Orthopedic Fitness, Diabetes Fitness, and many more. I cannot be more grateful for the team at the fitness center for getting me up to speed on physical fitness.

I chose the orthopedic fitness track, and a personal trainer worked with me to form a routine I could handle. The trainer taught me that I can do almost all workouts. I just needed help figuring out the form I needed to do while having fused joints in my feet. I learned a lot through the program at the fitness center, and now I have an exercise routine I can perform at home.

Home Exercise Routine

To exercise at home, I went the simple route and bought a very cheap, adjustable weight bench along with a few dumbbells. Everything together cost me less than $100. Once I had all the equipment, it was as simple as trial and error until I figured out a routine that my body could handle. I started out easy. I did half an hour of cardio every single day and about fifteen minutes of weight lifting afterward for 3-5 days out of the week. The weight lifting was simple then:

  • Wrist Curls
  • Arm Curls
  • Arm Extensions
  • Chest Press
  • Shoulder Press
  • Calf Raises
  • Squats

My routine evolved over time. I also started wanting more out of my exercise. I didn’t want to just look good. My goals had changed, and I wanted serious strength, a strong heart, and good posture. That last part was something I never thought I would have due to scoliosis, but I had to try something regardless of my condition.

Exercise for Posture

Straightening my posture has been something I have wanted to do for quite a long time, but I had assumed surgery was necessary. During all my research about exercise, I came to find many people with scoliosis and similar deformities were able to better their posture through routine exercise. Surely it could work for me if it could work for others. This is the exercise routine I perform every single morning to improve my posture:

  • Wall Slides
  • Prone Y’s
  • Shoulder Dislocations
  • Foam Roller Back Stretch

I perform these exercises every single morning as a warm-up before my cardio. My back strength has improved along with my posture, and I’m sure it will continue to improve as I continue these exercises.

Current Exercise Routine

Everyday

  • Wall Slides, 3 sets of 10
  • Prone Y’s, 3 sets of 10
  • Shoulder Dislocations, 1 set of 20
  • Foam Roller Back Stretch, 2-5 minutes of 30 second intervals
  • Cardio, 2-4 hour bike ride

3-5 Days a Week

  • Wrist Curls, 3-4 sets of 15
  • Arm Curls, 3-4 sets of 10
  • Bent-over Row, 3-4 sets of 10
  • Shoulder Press, 3-4 sets of 10
  • Dumbbell Butterfly, 3-4 sets of 10
  • Chest Press, 3-4 sets of 10
  • Lat Pullover, 3-4 sets of 15
  • Arm Extension, 3-4 sets of 10
  • Calf Raises, 3-4 sets of 20
  • Squats, 3-4 sets of 10
  • Sit-ups, 3-4 sets of 20

I do this exercise routine while dealing with Charcot Marie Tooth and Scoliosis. I say this not to brag, but to emphasize that it is possible to improve your health and quality of life even with these ailments. The key is to push through and try longer than just a week. I have spells that last up to a month long where exercise feels dreadful, then suddenly I feel amazing and can exercise no problem for awhile. We all have our ups and downs, and we should allow our body time to adjust before judging whether something is possible or not.

With that said, I was very careful when starting out, and I didn’t increase weight to anything significant until I was comfortable with knowing my body. I highly suggest that anyone trying to exercise while having a disease like CMT consult with their doctor and maybe a fitness and/or nutrition expert first. Start out easy and slow, just as I did. Professional supervision is always a good idea as well, especially at first. Now, go exercise, and be careful!