Trying Out Physical Therapy with CMT

Jill Price avatar

by Jill Price |

Share this article:

Share article via email
CMTX5 case study

I did not realize physical therapy could be such an adventure. WOW. Not only was it informative but it was also a workout! Boy, my muscles ached after the first session. I had an evaluation done a few weeks ago, but the other day was the first session. The evaluation consisted of me walking while a physical therapist assessed my mobility and range of motion.

Why did I go to physical therapy? The orthotist thought it would be a good idea to help me adjust to my ankle-foot orthosis (AFO). I am having a hard time with steps and balancing on inclines, as I’m still getting used to the braces. So, I went to physical therapy, hoping for the best. I was not really sure what to expect.

The physical therapist was very sweet and young. He made sure to tell me that the hardware in my back, from my scoliosis surgery, was older than him. Not really sure how I felt about that, so it’s a good thing he is sweet. He asked a lot of questions and seemed to truly want to know how CMT affects my daily life. I explained how the AFOs are helping me, but at the same time, I am not 100 percent confident when wearing them. The AFOs do help with the fatigue, and sort of keep my ankles straighter. Yet, I find it harder to navigate steps and sometimes feel off-balance. I also notice that my knees still hyperextend.

Again, the therapist evaluated my walking. I always feel self-conscious when anyone watches me walk. I am very aware of my awkward gait, which makes me uncomfortable. However, the therapist was really nice and nonjudgmental. He decided on a few exercises that could help me learn to control the movement of my knees. They were awkward and hard to do. After the first set of exercises, my hips stiffened. Then, we had to do a few different exercises to stretch my hips. It’s amazing how one issue leads to another issue.

We did a few more exercises to learn to control the movement of my knees that were a bit awkward and uncomfortable. I was sorer than when I go to the gym and ride the bike for about 40 minutes. I was surprised by how stiff and sore my hips and knees were when I woke up the next morning. I am hoping that pain goes away with time.

I now have a few exercises to try at home and at the gym. Am I convinced they will help? The jury is still out on that. But I am going to stick with it. I would love to know your experiences with physical therapy. Do you find it helpful at all?


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.


Ronald Nelms avatar

Ronald Nelms

Hi Jill
I am really enjoying your articles they are very helpful. If I may ask? I had to take a lesser paying job because of my disease. I have CMT type 2 and the weakness in my legs is overwhelming at times. I was wondering do you or anyone else you may have talked to have any suggestions on what kind of job I should be looking into. I am looking for a part-timer just to connect the dots. Thanks again for sharing the information and your personal challenges with others.

Jill Price avatar

Jill Price

Thank you for the kind words! I am glad you are enjoying my articles. I am not really sure about jobs that would be good. Have you looked into dagta entry from home?



I have a friend who has charcot-marie-tooth disorder. He is on an Ontario disability and needs to do extra medical supports, to help manage this disorder. Would you know of anywhere he could access extra funding for these supports.


Leave a comment

Fill in the required fields to post. Your email address will not be published.