What It's Really Like Living With Charcot-Marie-Tooth Disease
ฝัง
- เผยแพร่เมื่อ 19 ก.พ. 2020
- Hi! My name is Bethany Meloche. I am a writer who also makes videos about living with CMT. I hope you'll subscribe and join me on the journey :-)
This video was produced by the team behind CMT&Me. CMT&Me is an app that you can download on your phone, which will allow you to take part in CMT research studies without leaving your house! The data the app collects is crucial information for helping researchers develop better treatments for CMT. If you have CMT, please check them out at vitaccess.com/cmt-and-me
instagram: @bethanymeloche
facebook: / bethanymelocheauthor
website: www.bethanymeloche.com
learn more about CMT: www.cmtausa.org
buy my book: www.amazon.com/How-Should-Bod...
![[안방1열 직캠4K] 베이비몬스터 치키타 'FOREVER' (BABYMONSTER CHIQUITA FanCam) @SBS Inkigayo 2404707](http://i.ytimg.com/vi/Tn3bGHiBWkg/mqdefault.jpg)
My daughter was diagnosed with this when she was 6. She's almost 26 now. It's absolutely heartbreaking. I would give anything to take her place and relieve her of this burden.
Sending love to you both x
Stay strong Bethany, know that you aren’t alone. You inspire many others who have CMT and also educate those that don’t know the struggle. ❤️
Thank you so much Philip ❤
I am a 58 year widowed man who has within the last 4 weeks been diagnosed with CMT. I also have Parkinson’s. I can relate to everything you say. Thank you for sharing your experience. It helps me to better understand this disease.
I was diagnosed at 5 with one of the worst cases the Shriners and Dr had ever seen. As a young child skipping, running, holding things and so forth I was severely beaten and punished. Trying to be quick I graduated class Valid Victorian, I wasn't dumb but held back put in special classes and treated as if I was not smart. Until one teacher noticed and knew I was very bright but had poor coordination and motor skills. I wore back braces, leg braces, surgery after surgery and I kept going. Yes I had a lot of bullies I had to deal with and all the making fun of. Different times where you were treated like the plague. Never picked for teams no girlfriends and very few friends. My fingers are bent I can't tell if I have ahold of something or too tight as breaking glasses in my hands. My back is a hunchback, my feet have very high arches where I only walk on the ball of my toes and fall and twist my ankles a lot. Along with cmt I have COPD and heart trouble. I was fortunate and got married and had two daughters but as I got Older my wife left for someone NORMAL and left the kids at 2 and 4. I raised them alone and it's heartbreaking not being able to go outside and play with your children or just the simple things. Now I'm mostly in a wheelchair and kids are grown. I'm just waiting for death as a sweet release. You are very beautiful and people with cmt understand. Be strong and keep going because the moment you give up it's over. Also as you know don't overdo it, do what you can. God bless and best wishes. I pray for death myself and so lonely because I'm different.
Wow thank you for the awareness. My 3 year old is newly diagnosed with NEFL mutation. I’m still learning what this future will look like for her. You are beautiful and doing it. Every step of strength is in you. God bless you
Thank you for your sweet words. Sending love to you and your little girl!
I’m also struggling to walk but without the braces i can not walk without somebody holding me
Hi! Thank you for sharing :) I'm a trainee physioterapist and I am trying to read up on CMT. I feel like I could have done all the reading I want, and still your videos show me more than anything else that I could find, what it means to live with CMT (or what it can look like, I suppose, since I understand that it can look very different from person to person). So that helps me a lot in understanding how I can help future patients. Thank you so much. You are very inspirational!
Your comment totally made my day, thank you! Please let me know if you have any questions! :)
Opening shot I saw 'the hand', you know what I mean. Braces & canes: I've had enough and I do ok without but 'the general public' needs them more than I do because I can pass for normal when fully clothed and standing still. I've been wrongly accused of intoxication many times based on my walk or need to use my eyesight for balance. For as long as my CMT4 remained undiagnosed, it was repeatedly mistaken for intoxication.
"I've been wrongly accused of intoxication many times based on my walk" That sounds so frustrating 😅 I used to worry about being pulled over by a cop and being asked to 'walk a straight line!' As if!
H, Bethany, I also have cmt since my early childhood. I think it's great that you raise awareness for cmt with your videos. It's really fascinating how different cmt can be. My hands are better than yours but I really wish, I could still walk as good as you. Can't do a step without my braces und my crutches. Please excuse my mistakes, I'm from Germany
More power to you❤
Thank you!
I also have CMT since 2014. I cant walk but all my of senses are good. I am a wheelchair dependent and in all those years I lived in depression.😢
Mental health challenges are way more prevalent in people who have long-term conditions (and they are already pretty common in the general population!). I'm so sorry to hear you've been going through a long depression. I hope you're able to get some support - eg counseling, medication. Please don't give up!
Thanks for sharing this video. I recently found out what this cmt was. This is a touchy subject to learn about. You seem like a nice woman and glad you shared your life with us its very educational.
Thank you so much ❤️
I love all you have shared of the personal experiences with CMT. I myself have it and find comfort in the videos. Sorry if that sounds weird.
Not weird AT ALL and exactly what I hoped for. Thank you for this comment ❤️
great vid! i really appreciate you sharing your story :)
Thanks so much! :-)
Hi i am 53 and i am living With CMT1a since 42 years
DNA testing post-2000 made such a difference. My sister (1948-2018) had CMT4 and was diagnosed in the late 1960's after biopsy. I had the benefit of DNA analysis but endured decades of insidious onset. I was repeatedly misdiagnosed and vilified due to my need for daily medication.
Hi Bethany. I can totally relate to this as well. I don't like to traverse wide open spaces at all and it is a case of seeing where you've got to go to and go for it, especially when carrying spillables. The concentration needed is unbelievable as balance is a major problem. I actually live on a narrowboat here in the UK and getting from one place to another is easier for me as a wall is never more than an arms reach away. Like you, I never wear my orthoses indoors and I use all walls and fixtures to keep my balance in check. Keep up with everything and keep smiling.
Thank you for your lovely comment Dave! I must say it's nice to hear from people who relate :-) I'm impressed you live on a boat, despite their wobbly nature!
"the concentration" yes it makes me very goal oriented when walking or on my feet. I can walk miles but I cannot stand still for more than a few moments -like riding a bike it's easy after it gets going. The shortest path sometimes makes me curt with others. Not an attitude or a personality trait, it's a disease I can't help. I'd rather a free hand than carry a cane. When home I bounce off the walls when walking, you know what I mean.
They have spill proof water bottles with lids and a handle. I think you need to make things easier for yourself don’t use glass cups or make them easier for you to grab in the cabinet. After i had my hip replacement i used a walker in the house it helped a lot. I had a pouch attached to it to hold my water bottle and phone in. I have CMT 1a
Thank you for sharing your story by the way. I know I’m not the only one dealing with this. 💕
I'm definitely on the look out for my perfect pretty water bottle :-) And thank you Jemma... you're 100% NOT alone! ❤️
I have had cmt all my life. I’m 14 right now. It’s rly hard. I just found out I have little feeling in my feet. How is it possibly I can feel so little but have great pain in my feet and legs. It’s hard but I will get threw this. My science fair project was making casts that I can walk in easier. :)
What a cool science fair project!! I love that! It is rather annoying that we can be both numb and pain sensitive at the same time! Since you're under 18, have you been to the CMTA's summer camp? It's AMAZING
I also have CMT since 2014. I cant walk but all my of senses are good. I am a wheelchair dependent and in all those years I lived in depression.😢
I have it too Bethany
I'm glad you found my channel ... and I hope you're doing well Rebekah! x
I too have a hard time squeezing glasses or say a takeaway coffee cup. So now it's thermos bottles with a handle for me. Also, I don't wear my braces in my small studio apt. and I touch the walls and furniture the whole way to the kitchen or bathroom then lean on the sink. We do what we do!😊
"We do what we do" - exactly! I do find people with CMT to be incredibly adaptable! :-)
Hey thanks so much for sharing this video, I have a family history of CMT. I am 29 and I dont have any syptoms. When did the symptoms start for you? and what should I watch out for?
It's a good sign that you have no obvious symptoms at 29! Symptoms became obvious to me at age 12, but looking back they were present well before that. I'd say common early signs are tripping and falls and high arched feet (but not for everyone!). Neuropathic pains in the arms or legs like tingling or pins and needles would be another sign, as well as decreased sensation and decreased muscle tone.
love u
Living with cmt is different for me. I can't sit on a couch. I will never get up from there. Instead I have to sit on pub chairs and use my arms to get up. However my hands and fingers are good. I don't have a problem holding objects.
I realize this video has been out for a bit, but I just now saw it.
At one point you mentioned that you prefer not to wear your braces in the house. I'm curious as to why you made that choice. It's very rare that I go without mine, inside or outside. Is it perhaps to keep your legs better exercised?
Hi Dan! It's primarily a comfort thing. My feet are happier uncaged and it's easier to curl up on the couch! There was a point in my life - pre-surgery - where I needed to wear braces to even stand, so I suppose there's a part of me that just wants to enjoy the "luxury" of walking barefoot again!
However if I go out of the house, I tend to leave them on when I get home, since it really is tremendously easier to walk with them!
And, yes - I do sometimes worry that if I stop doing something and try to do it again later, I'll find I no longer can. It's happened before (for example, using a computer mouse), and I wouldn't be surprised that if I stopped walking barefoot for a few months, I'd have a very hard time doing so at all!
Excuse my rambly answer :)
-Bethany
@@BethanyMeloche Thanks Bethany - and not a rambly answer at all. I agree it's nice to go without them once in a while. For me it's always painful and uncomfortable putting them back on after having just gone without. For that reason I either leave them off all day or only take them off towards the end of the day - that way my feet/legs can recover with a night's sleep before putting them on the next morning. The above is why I typically just leave them on all day.
❤️
I don't have breakable glasses or cups.All plastic and ez to hold...
I have CMT as well. And I can totally relate to this. I have a question for you do you deal with chronic pain?
Zags Theklown i think everyone with CMT has chronic pain.
Hi Zags! I know many people with CMT who have a great deal of pain, but I am lucky to have very minimal pain, just occasionally tingly/prickly nerve pains in feet. I used to have much more nerve pain and I don't know why it has deceased. Prior to my foot surgeries, it was also very painful for me to walk due to pressure sores.
One hard thing is having to buckle yourself up
Is there any madication for cmt?
Unfortunately no medicinal treatments are available yet, although organizations like the CMT Association have exciting research underway! There are medications that can help with pain. And exercise, a healthy diet etc can help tremendously to maintain and even regain some function :-)
Could you fill up two large travel containers and only walk to the kitchen once?
Yes, I've been playing with that strategy! Also got a little trolley to help with the carrying :-)
Have plastic glass ? And or water bottles near you
I use a little wheeled trolley now which helps quite a bit! The water issue was more intended to illustrate one micro challenge among many :-)
I take a bottle of water to my desk. Easier to carry without spilling.
Eu fiz os exames e descobri que estou com a doença de charcot-marie-tooth!
Que bom que você encontrou meus vídeos! Você não está sozinho!
I have CMT-2, hit me later in life. I sometimes bitch about it, but I mostly find workaraounds.
I find people with CMT tend to be incredibly adaptable! :-)
@@BethanyMeloche Well, it's that or just quit...and I won't quit as long as you won't! : )
@@cmcd1008 You've got a deal! :-)
Buy bottled water, keep it near your couch.
I do use a water bottle now :) I have trouble with the caps on typical bottled water!
@@BethanyMeloche I have limited strength too, as of late, so I use a rubbery disk to open things.
@@zenzen1916 I should try one of those, thanks for mentioning it!
Hey Bethany, you really to get some cups with a handle and lid to make life easier for you