What ‘living well’ means to me, given my CMT symptoms

Charcot-Marie-Tooth (CMT) disease hampers many aspects of my life. Because of my weakened dexterity, I often struggle using chopsticks, particularly longer and heavier ones. Extremely long walks can sometimes be difficult because I get increasingly clumsy and prone to falls as my ankles begin to tire. My right foot…

When is it appropriate to describe CMT symptoms as mild?

From a cursory internet search, it’s easy to find many articles that describe certain Charcot-Marie-Tooth (CMT) symptoms as mild. Some even refer to types of CMT that way. For years, I didn’t think too much about it. After all, I first started seeing these types of articles as…

Case study: ID’ing relatives may aid earlier CMT diagnosis

A 52-year-old man was diagnosed with Charcot-Marie-Tooth disease type 1 subtype A (CMT1A), after presenting a history of muscle weakness in his legs, foot deformities, and walking impairments. The report illustrates how identifying relatives with similar symptoms may lead to an earlier referral in subsequent CMT cases in the…

Is There a Lighthearted Way to Talk About CMT?

How do those of us with Charcot-Marie-Tooth disease (CMT) communicate how it affects us and explain what it’s like to be a CMTer? As someone who has fairly mild CMT symptoms, I’ve described the disease as a kind of genetic clumsiness. However, I always knew that never…

I’m Learning to Appreciate the Slower Pace of CMT Life

Can Charcot-Marie-Tooth disease (CMT) be a gift? Many in our community have pondered this question, and I’ve written about it before. But I’ve been thinking about the idea again after my sister brought it up while we were visiting our parents in Ohio recently. My sister…

The Importance of Fostering Good Patient-doctor Relationships

Much of what we know about Charcot-Marie-Tooth disease (CMT), and often take for granted, is relatively new information. Many of the breakthroughs in our understanding of treatments, genetic subtypes, orthotics, and surgery have come about in the last 40 years. But there’s still a lot we don’t know.

Transforming Frustration With CMT Into Learning

There is a common game that children play, although I’m not aware of an official name for it. The game is pretty simple and involves two players. Player one presents a fist to player two and holds it as tightly as possible. Player two then tries to pry each finger…

I’m Learning to Be More Open About My Needs

I made my friend from childhood wait while I put on my ankle-foot orthoses (AFOs). We had just finished eating our eggs and toast at a fancy breakfast place, but we hadn’t seen each other in three years, so we still had some catching up to do. My friend…