Columns

Too many people living with Charcot-Marie-Tooth disease (CMT) feel alone in their struggle. Too many are under the impression that they must individually shoulder the burden of managing their symptoms while navigating an environment that isn’t constructed with disabled bodies in mind. No one should have to overcome…

Payton Rule, a doctoral student in clinical psychology at Washington University in St. Louis who also has Charcot-Marie-Tooth disease (CMT), knows that while living with a disability can be incredibly challenging, plenty of research shows the many ways that disabled folks live richly and fully. In fact, measuring and…

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…

Managers, directors, and administrators are always discussing methods of inspiring high engagement among workers. Studies suggest that highly engaged employees are good for a company’s culture. Such employees are invested in their company’s goals, demonstrate good productivity, and are just good for business. However, I often wonder if some of…

Many of us with Charcot-Marie-Tooth disease (CMT) have struggled to find medical professionals adept at working with patients like us. A good, productive patient-provider relationship requires effective communication, understanding, trust, and appropriate investment from all parties. Considering that recently, I had a revelation: This kind of dynamic also…

To help clients improve balance and proprioception, or our ability to perceive our bodies in space, many personal trainers suggest starting with basic exercises and slowly working up to more challenging ones. One of the most rudimentary and approachable exercises, for some, is balancing on one leg. Many of…

Those of us with Charcot-Marie-Tooth disease (CMT) know that it takes things from us in profound ways. For example, it chips away at our balance and leads to muscle atrophy. Because CMT symptoms often manifest in unpredictable ways, we can’t effectively plan for our future. As a result, many of…

I’ve often looked to my father as an example. That’s been true in many contexts, but it also includes his living well as a person with Charcot-Marie-Tooth (CMT) disease. From a young age, I’ve known that both my father and I have CMT. Throughout my childhood, I was…

Like many, I’ve enjoyed watching incredible athletes showcase their abilities at this year’s Paris Olympics and Paralympics. The Olympic Games always remind me of all the forms athleticism can take. There are countless sports out there that are all recognized as valid and worthy endeavors on a global stage.

Sometimes it feels like some of us live in separate worlds with different rules and dynamics. I’ve noticed this while chatting with friends, co-workers, and even strangers about Charcot-Marie-Tooth disease (CMT), my symptoms, and what it’s like living in a society not quite optimized for people with disabilities.