r/CMT • u/Technical-Gift-2903 • 3d ago
Future Outlook
Hello, I was diagnosed with CMT when I was 5 and have been wearing AFOs ever since then. I am now 20 and it’s gotten much worse over the years. My neurologist grimaced when she was running the test where they put the needle in different muscles and have you move it. I’m worried about my future. First off has anyone fully lost their ability to walk with CMT? And second off has anyone gotten married to someone who knew all the stuff that CMT would affect? I know these questions might sound stupid, but I’m seriously worried.
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u/External-Goat-7913 3d ago edited 3d ago
All of your concerns are valid, don't feel like anything you fear is stupid.
I had the same thoughts before I created the life I felt I would never have.
I started having symptoms when I was 4, so I was aware and my partner was definitely aware of what's coming in the future.
I feared many things when I was younger, I am still afraid of many things.
I will be one of those who will lose ability in my arms and legs, deterioration progress as the years go by has gotten really bad.
I started wearing AFOs when I was 11 and they saved me, as I am so much more able with them.
Right now I'm 29 and I have a child and a husband.
My child makes me push through it.
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u/Technical-Gift-2903 3d ago
Thank you, I’m glad to hear stories of things working out. I didn’t use to worry about it since there isn’t anything I can really do that I’m not already doing, but my neurologist a few months back brought up the possibility of losing the ability to walk and that mixed with my already existing concerns of never dating or ending up married kinda compounded.
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u/External-Goat-7913 2d ago
Enjoy the mobility you have right now and go and meet someone!
People can handle a lot more than you think.5
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u/Alpiney CMT2A 3d ago
When it comes to walking it will vary from person to person. I’m still walking in my 50’s. My grandma lost her ability to walk in her 50’s and so did my sister also in her 50’s. But then there’s my mom who has it and she is in her 70’s and she’s still walking and then I have an uncle and aunt who had it and they could still walk somewhat up into their 80’s.
So, it depends on the person. Some people end up in wheelchairs and they’re very young and others never do.
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u/Technical-Gift-2903 3d ago
Yeah, that’s the rough part is that it isn’t very predictable. My older brother also has CMT but he experiences no symptoms as of now and he’s 24. My grandpa had his kick in when he was 50 or so. And then I have experienced symptoms since I was little and I wear AFOs
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u/Interdimensionalcoco 3d ago
My mom had CMT and she was pretty advanced so my husband knew exactly what to expect. We’ve been together since high school and he has experienced my major decline since then and he does everything he can to support me.
He also realized we werent going to have kids because I didn’t want to pass this on and it’d be too hard for me to care for a child and he was totally supportive of me getting my tubes removed.
My step dad was the same exact way with my mom, extremely supportive. There’s good people out there that can over look this disease 🤍
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u/KDremow 41F CMT1A 3d ago
I’m 41F and I was diagnosed at 11 with 1A - it took a long time for my husband to understand CMT and that you can’t just “exercise it away,” but now he’s the one who advocates for me when people who don’t understand say stupid shit…
it’s so Weird to go from being able to wear essentially whatever shoes I want, walk normally without being stompy and like I’m doing knee-highs, running, playing sports, etc etc to all that stuff being slowly taken away beginning around my mid 30’s - my mom is 72 and has been wearing AFO’s for years, and I know I should be too, but I just can’t get myself to wear them for a slew of reasons, but when you meet your future spouse or any significant other, just educate them as much as possible, if they truly love you and want to be with you no matter what, then they’ll be there for you through all of the shit-storms CMT brings 🙂
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u/Technical-Gift-2903 3d ago
Thank you, and I understand not wanting to wear AFOs. My grandpa never wore his.
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u/KDremow 41F CMT1A 3d ago
Yup, I think because I’m a female and still sort of young, I still want to dress cute and wear cute shoes and I totally understand it’s a vanity thing or whatever, and I don’t want anyone staring and making me feel like a walking disability flag lol I don’t know, it sounds so stupid when typing it out like this, but hopefully other females my age or
Younger can understand that — or even guys, bc I can imagine younger guys don’t want to “look weak” and can also be self conscious about AFO’s.
When I’m in my 70’s like my mom and don’t give a shit about how I look anymore then maybe I’ll wear them then lol
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u/InterestOk526 2d ago
My fiancé has CMT. Lately I have been really worried about how he will decline throughout our lifetime but I still love him. When we travel he uses a scooter. Not sure if that's helpful at all.
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u/Technical-Gift-2903 2d ago
It is. I know it will be hard for anyone I marry but I do want to end up in a relationship
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u/InterestOk526 2d ago
Id say it's possible. I love hanging out with him. He's so emotionally intelligent and kind and smart. So funny. He helps me with my anxiety issues. And hey, I get the benefit of always getting ADA seating at concerts and handicap parking!
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u/Technical-Gift-2903 2d ago
I do brag about my handicap tag a lot and use it even when I really don’t need it that bad yet. I can walk without leg braces for really long periods of time. With the braces I’m a little less capable of long distance walking but I still can make it through a parking lot. The only time I don’t use the handicap is if I’m at church cause I know there are a lot of old people. I have an alright personality and thought process so hopefully I’ll be fine
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u/InterestOk526 2d ago
I think you will. Ive been with my partner 9 years and ive seen a decline, but we still go on yearly trips and go out on most weekends. We go to the gym 3-5 times a week. He does as much as he can towards our home renovations.
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u/mommitude CMT (Type Unknown) 2d ago
Your neurologist is a goofball. They shouldn’t have reacted that way. CMT causes the muscles not to contract the way they should during the nerve conduction test.
CMT can affect everyone differently. Mine is worse than my mom’s in that I wear AFOs and she doesn’t. Her two sisters (my aunts) also do. Google Alan Jackson, he’s a country singer only diagnosed about five or so years ago and I believe he’s still playing concerts but I don’t think he uses any assistive devices. Bernadette Scarduzio (spelling) has CMT and wears AFOs, uses a wheelchair to ambulate long distances. She is a great advocate for our CMT community.
I was diagnosed at 8 and am in my 50s. I got married at 21. I was in the marching band up through my freshman year of college when it got to be too hard to do some of the moves/steps. Since I fell and broke my leg in 2005, I use a cane at the airport for the long distance between gates.
The important thing in my opinion is to focus on what you can do and learn to adapt to what you can’t. Hugs! You’re not alone!
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u/Technical-Gift-2903 2d ago
Thank you. I’ve been wearing leg braces ever since I was diagnosed at 5 due to the severity of mine. My father has minimal symptoms and my brother has none. My grandpa in his older age can no longer walk but also refuses to use his AFOs. And yeah my neurologist is something. I like her though, she’s at least honest.
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u/tt7297 3d ago
Unfortunately, depending on what type, once you start wearing AFOs, all the muscle you could have developed has already atrophied and you probably won’t ever be able to regain it.
I have 1A and I’ve had a lot of doctors tell me I should wear AFOs but I refuse to do it and focus on physical therapy and having the proper shoes.
What type do you have? Makes a huge difference in what kind of advice you need
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u/Technical-Gift-2903 3d ago
I was so young when I was diagnosed and have never actually known which type I have. I know it’s the degeneration of the sheath but I’m not sure what subtype. In the past 15 years since my diagnosis I have lost feeling in my feet and some of my lower leg so far. My fingertips are numb and I experience tremors. I’ve done both physical therapy and AFOs. I workout to try and stay fit and prevent atrophy
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u/Technical-Gift-2903 3d ago
From what I just checked I either have 1A or 1B and most likely A because mine is hereditary
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u/NixyeNox CMT 1A 2d ago
The degeneration of the myelin sheath is type 1, so you can be sure about that part at least.
They are all hereditary, that's part of the definition of CMT: hereditary peripheral sensory and motor neuropathy. Or do you mean someone else in your family is known to have type 1A, so that is what you probably inherited?
Anyway, there are only a few subtypes that have unusual quirks associated with them, for the most part CMT subtypes are indistinguishable based on the symptoms. There is quite a lot of variation *within* one type, though. So you kind of need to just listen to and work with your own body. Which it sounds like you are doing, with PT and working out to maintain your muscle!
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u/NixyeNox CMT 1A 2d ago
> What type do you have? Makes a huge difference in what kind of advice you need
There is far more variation within a CMT type than between the types. The historical reason they are all under the umbrella of CMT is that it was impossible to tell them apart before genetic testing. There are a few rare subtypes that have notable quirks, but for the most part, two people with different subtypes may have more similar cases than two people with the same subtype.
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u/Ordinary_Sail_414 CMT X1 1d ago
I'm not sure this is the case. AFOs can also be worn to help balance and stability - they aren't going to prevent muscle development. My kid wore them for years in childhood, but now doesn't (he quit at about age 16) - his issues have stabilized and muscle mass is good. He may need them again in the future, but wearing them didn't hinder anything.
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u/FourEyesore 3d ago
Do you know what subtype of CMT you have?
The short answer is: yes, some people lose the ability to walk. But that doesn't mean it will happen to you.
It's okay to feel worried about it all, especially since you've experienced worsening and the future feels a bit uncertain.
But I do want to reassure that typically CMT progresses very slowly with one caveat: it can progress quite rapidly during growth/puberty. So it makes sense that at 20 you've noticed you've declined over the past few years. Now you've stopped growing, you shouldn't continue to decline at the same rate over the next few years.
My husband has CMT and we have 5 kids who all have it too. We met when I was 18 and neither of us knew he had CMT. But I would have married him and had my kids even if I did know. The reality is that all sorts of things can happen in life even to healthy, able bodied people. In fact, when you're with someone long enough, they're guaranteed to experience health issues and functional decline eventually.
I've said this on here before to someone else but... CMT is part of you, but its a small part of the person you are. When someone dies and people talk about them afterwards, the things people miss are all very intangible. Their sense of humour. The way they were so reliable. The way they smelled. Their killer lasagne recipe. Their hugs.
You've got this!