Home Cooking Videos Showed a New Side of CMT Symptoms

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by Young Lee |

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I’m no Gordon Ramsay. And it’d be insulting to actual professionals if I were to call myself a chef or even a home cook. However, I do feel fairly comfortable in my kitchen.

I enjoy cooking, and not just as a means to provide myself sustenance. I love the way cooking celebrates the transformation of ingredients and how the correct application of techniques can make even simple things delicious. 

Even the mundane aspects of cooking I find fun. And I like the pursuit of better knife skills and finding more precise methods to apply the just-right amount of heat.

But recently, when I recorded a video of myself cooking for a project my family is working on, I came to a realization: Despite any confidence I may have in my competency with basic knife skills, I certainly don’t look like it. And I’d understand why anyone who watches me cook would have serious doubts about anything I stated in the first two paragraphs of this column.

Although I was never aware of it, my pinky contorts in odd ways whenever I grip my knife to chop vegetables. Despite how confident I feel with my movements around the stove and the cutting board, my hands shake more than I realized.

Watching these moments play back as I was editing the video project gave me time to think and reflect on these visual reminders of my Charcot-Marie-Tooth (CMT) disease. For much of my life, my CMT symptoms were limited to my legs: an awkward gait, a propensity for epic falls, and knees that buckle. And in that way, I’ve been pretty lucky.

However, as with any chronic condition, I know CMT will always be a struggle in my life. And that means encountering new or worsening symptoms and learning to manage them is part of that struggle.

But while ruminating over the feelings that well up when I watch the footage I recorded, I’m also reminded, once again, that oftentimes learning to manage worsening CMT symptoms is not just a physical or logistical struggle. It’s also a bit of an emotional one.

I think, “Wow, has my CMT gotten that bad?” and, “Is this how I look to other people?”

It’s frustrating to see my limitations played out so clearly in front of me. And it requires me to swallow a bit of my pride.

But I know I can’t go through life always worrying about how others may perceive me. I should be kind to myself and just do what I enjoy doing, no matter how I look. 

I’m confident in the traits and core beliefs that make me who I am. And while it is true that my skills in many of my physical pursuits may plateau or diminish due to my CMT, it doesn’t mean I can’t have fun along the way.

At least these are the things I tell myself. I’m still working on not getting so easily frustrated.


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, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.


Michael Rovner avatar

Michael Rovner

Very insightful and right on target comments. I am struggling with adult onset CMT, at least they think that's what it is. Swallowing pride is my greatest challenge. Thank you for the well timed thoughts.

Jean Bacon avatar

Jean Bacon

I agree with that comment wholeheartedly. It's not just pride it's also horror that I am now deteriorating so quickly. At first I was able to carry on doing most things like walking reasonable distances over any ground, playing tennis etc. It is now about 10 years since first probable diagnosis and over the last 2 years my ability to do physical activities has just vanished. I get very tired even standing for a few minutes and my balance has gone completely. Recently I have begun to be very butter-fingered dropping things all the time and unable to open bottles and tins without a great deal of difficulty even with gadgets that are designed to help.

Cara L Mavis avatar

Cara L Mavis

Thank you for sharing this experience. I have been dealing with CMT for about 30 years, and am an elderly adult now. I also was able to sort of move right along, no serious impositions until the last 2-3 years. I could almost pretend I was just fine. My balance is basically gone now - I am in PT for it, so I don't fall as often. My hands don't grip things the way they used to. A bottle will jump out of my hands onto the floor, like jumping beans. I use walking sticks, usually one, sometimes two; it was suggested I try using a walker, and I balked at that. I tell myself I am in no way ready for that. Stay positive - it is what we have, it does not define us. it could be worse.

Rose avatar


I have CMT. Had it for who knows. But at 58 things keep happening to me. My hand tremors, now raynaud's syndrome. I just fall for no reason. And so on.

Barbara McElheny avatar

Barbara McElheny

I have been struggling with CMT1A for many years. I can't understand what is taking so long. The vaccine for COVID 19 was developed in less than a year. I am 78 years old and struggling to walk. I'm too old to take part in the clinical trials. If there is a possibility PXT 3003 could help or keep me from getting worse why can I not buy this drug. I'm convinced I will not see a drug for this disease in my lifetime. I think it is all about money and profit for the drug companies.

Larry skaggs avatar

Larry skaggs

Prayers for u

Kim Cripe avatar

Kim Cripe

I am 57 & i have been falling, foot dropping, & unable to button, put backs on my earrings, dropping things worst & worst over the lady few months. The CMT is definetly worse, but i am now facing sering a rheumatologist for possible Sjogrens Syndrome. Anyone else going thru this?


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