Finding a new way to describe my experiences with CMT

Touch, taste, smell, hearing, and seeing: I don’t know if things are different these days, but when I was in elementary school, those were the five senses I learned from my teachers and textbooks. Until recently, I didn’t know there were others.

But indeed, there are at least two other senses: the vestibular system, which helps us maintain balance and posture, and proprioception, which helps us perceive where our body is in space. Combined, these senses allow us to constantly recalibrate as we move through the world and engage with people and objects.

These terms may be familiar to some, but they’re new to me. Of course, I was aware that the concepts existed; I just didn’t know the proper words for them until I heard them at a recent workplace training event.

But it’s good that I know now. It allows me to better contextualize my experiences as someone with Charcot-Marie-Tooth disease (CMT) — including my struggles and embarrassing failures.

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Too often, my days feel like one of those compilation videos that feature the Boston Dynamics robots tripping, falling, and failing to balance. It’s as if, like the robots, my nerves fail to capture the breadth and depth of information required to complete basic movements.

From chatting with other community members, I understand this is a fairly common experience for those of us with CMT. But I’ve always felt I lacked the verbiage to properly describe this struggle. Many times, I’ve resorted to calling it general clumsiness. I just can’t reliably know if my body is moving in the way I’m telling it to.

This issue has resulted in many spilled pots and pans and shattered plates and bowls. Tripping over cords is a regular worry of mine. When walking, I sometimes struggle to stay on a straight path. I sway and unintentionally veer off course. And I have to rely on either the mirrors in the gym or my personal trainer to know if I’m doing a movement correctly because I can’t trust my senses. I just don’t have the same kind of vestibular or proprioceptive sense as many able-bodied folks.

I didn’t know how to articulate that before, which was frustrating. After all, a large part of living with a chronic condition, especially a rare one like CMT, is being able to communicate your symptoms and experiences to physicians. It’s part of the skill set that allows a patient to foster a more collaborative relationship with their providers.

Knowing how to explain what you feel is also helpful in connecting and building relationships with others in the rare disease community. And it’s essential to be able to demonstrate to the world why a disease like CMT deserves attention, care, and research.

Furthermore, familiarity with these concepts allows me to focus on improving my vestibular and proprioceptive senses. I now know that when I practice tai chi or focus on which muscle groups I’m activating during my workouts, I’m exercising these senses.

I wasn’t seeking out more ways to describe how CMT affects me; it happened rather serendipitously. But I’m glad I now have another way to understand and describe my experiences.

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.