The Good, the Bad, and the Ugly of Charcot-Marie-Tooth

Jill Price avatar

by Jill Price |

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I recently read a post on social media about “mom confessions”: the good, bad, and ugly things we do as moms. Trust me, I have my fair share of those confessions. I began to think about it in terms of my Charcot-Marie-Tooth disease (CMT), the good, bad, and ugly things that have happened due to this crazy disease.

I know that living with a disability is not easy. There will be trials and tribulations. Some of them are funny and some are not. The day-to-day issues can be overwhelming at times, as with any chronic disease. It can help to see the humor or bright side to the craziness we face daily.

My confessions:

  • I may use the fact that it is difficult to navigate steps to get out of taking the trash to the dumpster.
  • I have scraped my knees more than my son. When he was little his pediatrician asked his nurse to tend to a particularly nasty cut on my knee.
  • If I sit on the floor or the grass, I need help getting up. When I was at a National Memorial Day concert, I sat on the grass and tried to get up without help — not the best idea. Thankfully, the two young men in front of me were very understanding and helpful as I fell into them not once but twice.
  • Opening jars is not a task meant for people with hand issues. I have an entire collection of jar openers and grips. Some days they help and some days they don’t.
  • I tried to open a bottle of wine with a corkscrew. Let’s just say it did not turn out well.
  • I have groceries delivered because I don’t want to carry all the items up the stairs. Otherwise, I go grocery shopping when I know my son will be home to help me unload the car.
  • I once stepped off a curb and broke my heel. Another time, I stepped off and busted my knee so badly that I needed 15 stitches. Both times, I did nothing but step the wrong way.
  • One day, I tripped over the corner of the rug in my classroom. I landed feet-up and flat on my back. The only thing hurt was my pride.

I could look at that list and think about how awful it all is, but I try not to. Thankfully, I have not been seriously hurt in most of the situations. I’ve needed a few stitches here and there but nothing more. It is easy to get depressed and feel sorry for myself, but that is not what I want to do.

Looking back at some of these situations, they are not as awful as they seemed at the time. I survived them and can even laugh about most of them now. Seriously, who breaks their heel by stepping off a curb? I am one of the few but that’s OK — it makes me unique. At least, that’s what my mom would say.

What are some of the good, bad, and ugly things that have happened to you?


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.


Marilyn Jackson avatar

Marilyn Jackson

I have broken my leg while standing in water only as high as my ankle, two little waves came in succession, i thought i'd just sprained my ankle, so walked on it for a week, only to have the bone split up ways 15 cm, I have stepped on a towel i didn't see and done similar stupid stuff, I have done the spin around fall, but not go down, automatically grabbing complete strangers on the way to regain my balance, some were gracious others not so, I understood, and laughed after. and so much more, and yes every time no matter what I could laugh once I recovered, i have ripped my knee apart while playing badminton, yep just badminton, and had an op which took 10mths to recover from, but i look back and laugh, who would believe this stuff... hahaha

Jill Price avatar

Jill Price

We have to laugh at the crazy things that happen.

Kristen Butorovich avatar

Kristen Butorovich

Thanks Jill.
Yes, I have those moments too.
-Trying to ride a bike with my family and take more spills than a child learning. But I will keep doing it!
-Walking and tripping for NO reason. My daughter thinks it's hilarious (12 yr old humor).
-Not buying button shirts as I can't button.
-Holding a glass and dipping it for no reason.
-I have a bad gait and I swear people stare at me all the time. I'm trying to think of a funny one liner to spit out.
plus all the things on your list pretty much...
Life is def harder with CMT. My priest has it and is in a wheel chair. He also has severe breathing issues. So at this point I'm grateful that I can still function. It's making me stronger and appreciating my cross.
Hang in there girl

Jill Price avatar

Jill Price

I have decided skinned knees are just a part of my life! I know it is not an easy disease.


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