Sharing the Challenges of CMT (Charcot-Marie-Tooth neuromuscular disorder) with Future Physical Therapists

by Melinda Lang

Every year, for the last 4 years, I have been invited to speak to physical therapy students at a local college about living with CMT.

I met the college professor, Diane, while completing a six-week course for certification as a Health Peer Leader, to assist seniors coping with chronic health conditions. Diane invited me to participate in her class at Sage college to discuss the psychosocial aspects of loss and grieving with chronic health conditions.

On my first visit, the other guests included a women with MS and a young mother, who had lost her baby to Sids. I felt out-of-place, as if their grief was far more to deal with than coping with CMT. On the other hand, I was devastated when diagnosed with CMT1A, worried about the future. Also, I had been losing my balance, struggling to climb stairs, and had lost significant hand function.

Last year, my discussion group included a women, who after suffering numerous strokes followed by brain surgeries, required a wheel chair and spoke with great difficulty. Although I need leg braces, walk with a cane, and frequently fall, in comparison my level of impairment did not seem as serious. So, at first I felt uncomfortable talking about the challenges of living with CMT.

However, the future physical therapists showed a lot of interest in learning about CMT, a disorder they never heard of. The students, always polite and compassionate, asked intelligent questions, giving me a chance to truthfully describe my degenerating condition. On the contrary, with family and friends, I feel the need to pretend that I am fine.

In addition, the professor invited me to participate in their lab as a mock patient. During the lab, the students performed some of the same tests my neurologist administers. One student checked my range of motion and loss of sensation to hot and cold. Another attempted to locate my nonexistent reflexes. Finally, a third student clutched a belt wrapped around my waist, while I attempted some high-stepping across the floor.

Conversing with the students has been very rewarding, knowing an entire class of physical therapists now understand how to help people with CMT. I encourage anyone, interested in sharing their experience, to contact a local college and offer to speak with students or participate in a PT lab.

great post Melinda!

Thanks Scott. Just got home from talking with the students again this year. It's great being able to increase awareness of CMT in this way, and let the therapists know how they can help their CMT patients and what they should avoid doing, which may do harm.