Simple Tips for Living with Charcot-Marie-Tooth Disease

There are no universal tips, especially for a condition as heterogenous as Charcot-Marie-Tooth disease (CMT). On the other hand, sharing experiences is essential, even if you know that your advice may not perfectly fit someone else's situation—or might not suit them at all.

I often wish that 20 years ago, my 14-year-old self had met the current me, who could have told her that discomfort, pain, and even injuries can be avoided by following relatively simple advice. Whether I would have followed that advice is another question... Here's what I would have told her:

1. Plan Ahead.

Especially how you'll get to a particular destination. Whether it’s a job interview or a museum visit, you need enough time to get there without rushing around. Thankfully, with Google Maps, we no longer have to unfold paper maps or ask strangers for directions. However, if you're constantly glued to your phone, it's much easier to trip and fall.

Pay attention to the road, even if you're in a new place and tempted to gawk at every tree. Even in beautiful locations (like the one in the video), walking can sometimes be challenging due to gravel or steep steps.

The grounds of beautiful Kyoto temples are often a nightmare for people with CMT because of the gravel making it impossible to walk without ankle aids.

2. Wear Ankle Braces, Bandages, or AFOs.

Pack a pair of ankle braces, elastic bandages, or other devices to stabilize your ankles in case you have to walk on difficult terrain, even if you don't wear them all the time. These can prevent your ankle from twisting—or at least reduce the severity of an injury if it does twist.

In addition, as I mention in almost all my YouTube videos, wear comfortable shoes. But what about socks?

3. Wear Toe Socks with Ankle Support.

Toe socks are the most comfortable option I’ve tried. Since each toe has its own "pocket," they don’t get squeezed together, and the toenails don’t dig into the neighboring toes. Toe socks can also help prevent toes from curling and reduce the risk of ingrown nails. These socks even have anti-slip soles - a great solution for slippery floors.

At night, you can wear socks with toe separators or spent some relaxing time with pedicure separators on. I would avoid professional pedicures, but a podiatrist visit could be a good idea. Both a pedicure and a podiatrist session were unbearably painful for me as the specialists tried to get my ingrown nails out. I don't think ingrown nails have to be dealt with unless they are inflamed, painful or uncomfortable. I just leave mine alone and it works just fine!

4. Relax Your Muscles—and Yourself!

Experiment with what works for you: stretching, yoga, manual massage, foam rollers, baths, or meditation.

Each option is beneficial if chosen with care:

• Massage pressure should be adjusted to your preferences.

• A hot bath in the winter might be as relaxing as a cold bath in the summer.

• Meditation usually gets effective with multiple repetitions.

  
  

Try different approaches to find what suits you. For me, daily stretching, a heated foot massager, warm baths with salt and bubbles, and "body scan" meditations work well. I’ll share more on this in upcoming posts.

5. Stop Suffering and Do What You Love.

Life is too short to suffer, especially from things you can change.

• If you dislike your job, you can change your career entirely.

• If you’re with someone who doesn’t suit you, you can part ways—or even change your entire social circle.

• You can move to another city or country.

• You can choose to have a big family or enjoy solitude.

  
  

You can do almost anything you want, within the limitations your condition imposes on you. To make it happen, start by following step 1 (planning ahead).

6. Let Yourself Suffer If You Need To.

Sometimes, it’s essential to vent and release all the negative emotions, especially about things you can’t change. You can’t change the fact that you have CMT, and it’s okay to sometimes feel sorry for yourself, envy others who are relatively healthy, or feel angry and frustrated with the universe! These feelings will pass if you let them out. Let go, and focus on what you can control.

7. Get curious about CMT.

The sooner you learn as much as you can about CMT, the easier it will be for you to deal with it. We tend to fear and be anxious about what we don't know. Although CMT is a rare disease, it's one of the most common rare diseases. There are numerous studies on the clinical manifestations, natural history, molecular pathogenesis, and drug development of different types of CMT. Therefore, CMT is well-studied compared to many other rare diseases. It's just that the information is often buried in scientific publications and is difficult to comprehend unless you are a trained researcher or healthcare practitioner. I can help you find the relevant information and make a wellbeing plan to reduce your CMT-related anxiety. Please book an appointment if you need my support.

There will be more posts about emotions and well-being with CMT. Please share your own tips for living with CMT! 😊