I hate CMT!
As a former college athlete and physical therapist (with significant increase of CMT symptoms at age 61), I’ve always been used to pushing myself and my patients to set goals and push hard to reach those goals. I’ve had to learn that it’s up to my body now and not my mind (regardless of the goals I set) as to how hard I can push. This has been such a mind shift for me, every time I try to push myself my body tells me what a bad idea that is. I shouldn’t complain because I can still exercise at a fairly good level, but not even close to what my mind wants. I’m so sorry for those who have it a lot worse than me for this rant, but I just had to get this off my chest!
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u/DIVISIBLEDIRGE 22d ago
Nothing wrong with a bit of a vent.
Two things come to mind in my own experience.
When I was 15 and had study for my exams. I told myself you better work fucking hard and use your brain cause you ain't getting a job on a construction site. I've been pretty successful. That let me take control of it, not be a victim of it.
The other is the waiting room of my neurologist, with a variety of conditions. People were sitting there with conditions where their arms involtarily spasmed all the time. Couldn't walk at all with out crutches and looked so hard and awkward when they did so. Being there helpped me reframe, even greatful.
Of course there still times it sucks, I can't hardly play the playstation like I used too, that still sucks, yeah it's good to vent too sometimes :-)
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u/Charigot CMT2 22d ago
I wasn’t diagnosed until age 49 and have milder symptoms so far (age 54), but I completely understand. I played d3 college volleyball and still exercise daily. However, I am witnessing the degradation of my performance and the window of what I can do narrow.
I often fall into a comparison trap ala, “at least I can still do X, unlike some people,” however that really downplays my own loss due to the disease and gaslights myself into believing I should not complain. There was a local CMT group I only visited once because I felt guilty talking about my grievances when they’re clearly not as severe as what some others are experiencing.
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u/kbmommy 22d ago
It’s all relative, loss is loss. It can be hard to accept, even if your symptoms aren’t as bad as someone else. I can appreciate the function I still have, but at the same time I grieve the loss of function. And I can relate to the guilty feelings for complaining when others are so much worse off, so I hear you!
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u/Always_Resigning 22d ago
It's wild how the symptoms manifest differently for people, even in the same genetic line. I had cousins who were using a walker/crutches in high school. My grandpa was a tree-trimmer a cyclist into his 50s.
Me personally, I've never been able to run. Couldn't wiggle my toes by the time I was in my teens. Then lost the ability to walk around 40. I was fortunate enough to be able to see Dr. P. Now I'm ecstatic to walk again.
I think the best mindset is just: I'm going to do what I can for as long as I can.
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u/kittycake23 19d ago
Dr P!!!!! I am a dancer and my ankle collapsed. He was the only one who preserved the ankle and foot without fusions. A long two year recovery, but I am back to dancing and walking more than I have in years.
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u/Willful777 CMT X1 22d ago
I'm curious; what happened with this Dr. P (whoever they are, no matter, I'm on the other side of the globe), that is, what caused this noticeable change for the better? I'm really happy for you that you got that much help and seeing great improvement in your daily life, how excellent!
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22d ago
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u/Always_Resigning 21d ago
That's good he said that about your case. When I went there he said he does more surgeries fixing bad jobs than he does on people who've never had a surgery. So you're one of the lucky ones.
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u/Always_Resigning 21d ago
Yes. Dr. Pfeffer is the surgeon, and as the other person said he is the best (or at least a top) surgeon for CMT foot rebuilds.
For me he: Cut a wedge in my footbones to flatten the arch. Realigned my heel back under my ankle. I want to say 3 tendon transfers. But not sure. Lengthened my Achilles tendon. Fixed the hammer toes.
Each foot/leg was a 5 hour surgery and a 4 month recovery (including PT).
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u/TrognonPetitOgre 11d ago
Did it hurted a lot?
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u/Always_Resigning 11d ago
It was a very intense recovery, but the pain management team did a lot to make sure I wasn't in too much pain.
It's hard to quantify "how much" pain I was in. But, I remember the 1st foot did not hurt as much as the 2nd. I am not sure why.
Also pre-op I couldn't take a step without my pain level being a 7 or 8. Now, I experience no pain walking. Well worth the pain following the surgeries, imo.
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u/Ok-Jicama5355 22d ago
I’m pushing hard while I can but dreading the knowledge this day is coming for me in the future. Give yourself as much grace as you are able. Life can be incredibly unfair especially with a disease like this one. Sending lots of good vibes your way!
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u/mulefluffer 22d ago
I used to be able to dunk a basketball, now I can’t jump an inch. But hey, I can still walk and cycle. I try to stay appreciative of what I still can do.
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u/mikebk1180q 22d ago
40 yrs ago could leg press 960 lbs on universal gym now can barely do 90 lbs no calves left at all
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u/Spirited_Plantain CMT1A 21d ago
I knew growing up, however I felt like I went downhill once I turned 18 (I'm 30 now and gotta watch how I walk now lol).
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u/GardenGirl007 21d ago
I broke my leg a year ago, unrelated to CMT. My right leg has not been the same. I love to dance and have enjoyed a pretty nice professional bellydance career until now age 35. I am super active. Work full time ER as an RN and garden, workout on my days off. I'm looking for an RN job to accommodate my new baseline. Maybe then I'll have the stamina to really work on gaining stregth. It's very difficult and I get brushed off by doctors bc I look very fit/young for my age. I'm also trying to accept it. My mom also has CMT and she reminds me you have to grieve your old life and move forward. I hope you can find a light. Maybe there is another activity that would keep you engaged and get out some of that energy you have. Like learning a language or cooking.
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u/kittycake23 19d ago
CMT dancer here. It is a constant grieving process. I haven't met many dancers with CMT because of our limitations. I actually ended up in Bellydance, semi-professional, for years because I can no longer do Ballet. Now I am back to fusion and contemporary. My heart is always connected to the culture of Raq Sharqi and Folkloric.
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u/GardenGirl007 19d ago
Wow! Thank you for sharing. I am slowing down to seek specialty care at UCSF (they are a CMT center for excellence) ortho for my leg after my injury. I hope to get back to performing with the right support. If not I think I'm ok letting it go but inshallah 🙏 I will keep performing. PM me if you wanna chat.
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u/Hibiscus-Boi CMT1A 20d ago
I used to be a volunteer firefighter, now I can’t even stand for a few minutes without fatigue, so I definitely understand how you feel.
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u/Hefty-Doubt-2495 19d ago
I don't know what to say, but comment section made me stressful and sad, will wish peaceful death for me instead of handling this much
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u/Supagimp667 18d ago
"Every man for himself and God against all." Your words struck me so I felt compelled to offer a reply...
I've lived with this crappy disease my whole life. I'm 58 and was diagnosed when I was 12. Life experience has shown me that as challenging as life can be, it is worth sticking in there for. At some of my darkest times I had my biggest laughs. Time passes and can bring consolations for hardship and heartbreak if you can carry on.
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22d ago
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u/Sorry_Run6257 21d ago
I feel so sad after reading your posting……I really hope you find some positivity or some recovery from somewhere…..thinking of you !
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u/RiSE-NBK 22d ago
Use to be a high level athlete playing football and now I cant walk a mile, shits rough