Finding a new way to describe my experiences with CMT

Understanding how CMT affects my vestibular system and proprioception

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by Young Lee |

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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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There’s power in being vulnerable about CMT struggles

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.


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Very well said!

Spery Zachary avatar

Spery Zachary

From mid twenties not being able to wear high heels to late sixties not be able to walk without braces with lot of pain I had a life of falling everywhere and anywhere but not letting it stop me of living my life to the fullest. I don’t share what I go through with anyone but accept my life as is. I do hope cure will be found for our younger generation. In my next life I will be a famous dancer.

allen bergson avatar

allen bergson

CMT has affected a great part of my body!

Toes, feet, ankles, whole of legs, both hands unable to close, diaphragm severely damaged, lung capacity down to 30%, thinning of optical nerve and problem with swallowing have all been diagnosed down to this disease.

To live I use electric wheelchair, CPAP for the last 32 years part of day all night, electric toilet and an feeding machine.

I also use carers as you can understand.

People often ask how hard is it to exist with my CMT ,and I reply just try and blow your nose with a tissue by having your hands with no use of fingers, they are just like paddles, and you also have to be sitting down. And that's only one duty and I will not bore you with the rest

I must apologise if spelling or composition is not up to proper standards but must explain my condition which is progressive has now reached my vocal cords, and as with no working fingers I have to use voice control which does not always pick up properly what I am saying.

Sandra Cooper avatar

Sandra Cooper

I always enjoy reading what other people experience whilst dealing with CMT. I exercise every day in the hope of delaying getting worse. I am not sure if it works but I keep trying.

Barbara Collins-Newing avatar

Barbara Collins-Newing

Delighted to see that I am not alone on this planet with bad balance, 2 left feet, unable to dress in the latest modes of the day. Never mind I am still here 77 years later.

Frans Noordijk avatar

Frans Noordijk

Om zoveel mogelijk evenwicht te corrigeren, hou ik met mijn linkerhand steun vast om met mijn rechterhand te doen, wat ik vroeger met losse handen kon.

Translation: To correct as much balance as possible, I hold support with my left hand to do with my right hand what I used to be able to do with free hands.

Donna Harrison avatar

Donna Harrison

Y granddaughter diagnosed at 4 yrs old now 7 yrs and both legs and hands are effected. And she is amazing Hardest part is wanting to be involved in everything scooter number one. Being different and some kids can be so mean. Does take swimming and gymnastics.
Her strength is amazing, but having CMT is hard always wants to know why she is different.
She prays and loves God.


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