You know you have CMT when...
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- Опубліковано 26 бер 2013
- EDIT FROM ELIZABETH: Bethany wrote a book!! Order her beautiful memoir about growing up with CMT on Amazon:
amzn.to/2lBC9cz
CMT (Charcot-Marie-Tooth) is a progressive neuromuscular disease affecting 2.6 million people worldwide. To learn more, go to: cmtausa.org
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Bethany wrote a book!! Order her beautiful memoir about growing up with CMT on Amazon:
amzn.to/2lBC9cz
I have CMT also and this is so true!
That’s exactly the path I went through, the coins, the grass, the little step, the handshake...
I was diagnosed with CMT for 30 years,and just recently discover thru a genetic test and a blood test that my disease is actually hsan1, hereditary sensory autonomic neuropathy opathy type 1A. These two diseases shares very similar or even identical symptoms!!
Thanks from the bottom of my heart.! I’m Richard, 62yrs old, been in denial of having CMT. When I was born family knew something was wrong, but hoped I’d grow out of it. …Just was not growing right is more like it. When I was 4-5yrs my older sister said in front of her friends, …HaHaHaa never seen a walk like that Rich! LoL, Not so funny if you’re the one doing the walk trip & falling. At 32yrs walking was really getting worse. Finally heavy AFOs up to bottom of knees and custom boots help me to keep working. I’m retired now. I was a carpenter & contractor & lastly a building inspector.
Truly THANK YOU, and peace to you.
You should consider ankle fusions, worked wonders for me
It's like you are telling MY story.
cheer up guys. I know you guys are going thru tough life, maybe even tougher. I have CMT, too, and i wanna mention that this devastating inconvenience and discomfort, considering in good way, was able to change how I perceive and view my life and society in a way that normal people can't recognize. Only thing I can do is live my life best and help other with full support. I mean that's a life, right?
Dealing with CMT is not easy I have that and yes it’s made a lot of changes in my life but I am also blind and so now on top of CMT my loss of vision is really creating serious challenges of my life consider that a blind person‘s world has a lot to do with touch and the lack and sensation from the CMT severely limits my ability to touch and feel what I am touching so yes I agree that’s the MTA is a difficult challenge but I also say that there are others that have difficult challenges
Keeping positive and finding ways to deal I don’t consider myself disabled I consider myself enabled in many ways and yes I am making the most of how to use my abilities
Mom and I laughed so hard, because it's so me. Thanks for the laugh!
You are AWESOME! If only CMT could give us your charm and cleverness!
A French CMT pal :-)
This hit home so much.
Thank you for you candor. I love your honesty and great sense of humor!
Elizabeth, I love your video. I've experienced all and more. I have still lead a full life.
So very true. Thank you for the video!
can I add...You know you have CMT when you fall over on a perfectly flat surface as I did (AGAIN!!) yesterday.......and the older you get ( I am 56 tomorrow) the more it hurts when you land..OUCH!!!
Yep, even perfectly flat areas are dangers! Wishing you no falls! xx
You are correct about all inconvieniencies...Learning to accept oneself as is and being able to cope with the syndrom is vital. Keeping fit, good muscle tone and leading a healthy lifestyle is vital. Also be in contact with a neurologist to monitor your situation as it sadly progresses as you age..........it's tough - but there are alot of worser syndroms/diseases around.........Good luck!
C...
I use to teach pre-school and I fell more than the kids lol 😆. One day I was running with the kids play a relay game and fell my students said to me, dag teacher you fall more than we do. We got a big chuckle 😂😂 out of that but he was right. So yeah you know you have CMT when you fall more than your kids/students.
This is soooooooooooo me! Excellent!
Lv U. you make my day. It takes a lot of COURAGE!!! Stay bless
Thank you!! xx
i have cmt ive had eight operations and im nearly 17 the last opperation was somewhat a success all the things you said were true good video
I hear you girl!
Bravo. Gracias por el vídeo
Excellent presentation.
Hi Bethany and original poster.. i do not have CMT nor know much about it but I hope you are all doing okay especially in these hard times and when life becomes a bit more normal we are all motivated to push ourselves further and appreciate what we have - happy new year to all and 2021 is the year of positivity no matter what....
lucky
I am so sad for you. You are so courageous and seems to be a wonderful girl. I hope that science will do everything for you to stay alive and, if possible, with the progress, recover.
Thank you.
Now i am 50 years old from INDIA . It came to knew about it at the age of 25 when grip in my feet weakened. I managed to live with this. but always remained worried. At the age of 37 i wore AFO.. I was recommended two homeopathic medicine Causticum and Conium. It slightly worked in lifting feet same which i used to do before the age of 25 while dancing and playing . You may consult homeopathic doctor. I will be happy if it work for you.
All the best
I also have CMT, I can relate to the stairs issue. I can't get down, it is difficult for me, plus people don't understand, they start gossiping abt you, saying that you probably had an accident or anything.
Those tiny steps, grass, hammocks or any sofa where you sink in or that’s too low… Yup, that’s my kryptonite
Made my day!
I'm so glad! :-)
Hi Elizabeth ,i am from Brazil and i have CMT. congratulations for the video! I identified with everything you showed. have an association called ABCMT.
you know you have cmt when pressing the shift key for caps is too much of an effort, ugh!
That moment in the restaurant when you drop your silverware it makes a loud noise ,your not certain that it will NOT HAPPEN AGAIN
I swear, lately this happens to me every time I'm at a restaurant! It's always SO LOUD
Hi I've had CMT since 8 im 56 now im praying for all of you JESUS loves us and someday there will no CMT!!!
:') finally. Someone who speaks my language
Yep .. Change or that other tiny flat stuff..
Nightmare when you drop change on the floor , times you wish you could just leave it there without being judged.
Try this , there is a neodymium magnet you can get from Amazon, size no bigger than the stone of a wedding ring .you can actually wear it like a ring , the magnet is so powerful, it can stack up four coins.
At least Indian currency coins are attracted to mags, idk about us etc..
Yeah, I also do get problems while taking out coins from my pocket.
lol, so funny. wish i could've had your attitude when i was younger
Lol! Made me laugh especially about the grass. Damn grass.. 😸 yup some days cmt can go screw itself.
Yup, yup! I have the same new balance sneakers! I'm lucky with the hands right now- they aren't as atrophied, but if I try to hold up 3 fingers, it looks like I can't count cause one finger never goes up.
Researchers from the Max-Planck-Institut “ The promising data promote LECITHIN as a therapeutic agent for CMT as well as possibly for similar demyelinating diseases”
Hi Tim, I have also CMT and in December I have an appointment with the Persons from the Max-Planck-Institut, who find this new Drug based in Lecithin!! I'm so excited, mayby it really works...😄
@@crazymetalmum5594 Hello, Did LECITHIN work to help/heal CMT?
OOF! That hit home! Especially opening a banana with a knife! I've been trying to eat more bananas to help with leg cramps, but I can never open the darn things!
Use dilaudid
Great attitude ☺👏 how were you diagnosed
Ive got it too...wish they would find a cure
My grandmother never has pain
Hi. I have CMT too
I can feel the pain inside u
Because I have the same thing
OMG......THIS! Lol always with the "you been drinkin?". I feel this so much. I've seen a lot of people with CMT writing books and I've always been interested in writing. How did you go about getting started? I've always been curious as to what other young people are doing career wise with CMT.
My husband has CMT. We have 3 kids and he's a Loan Officer. He was diagnosed when he was about 4-6 years old.
So nice to know that someone understands exactly what my life is like! What non-CMTer would believe how much stress "meet and greet" time at church could cause? Stupid handshakes!
wow.can't stop laughing lol
سبحان الله...Thank you for you effort..^_^
:)... everyone always asks me why i dont get a smart phone.. its because it is very difficult for me to use the touch screen so i use regular old phones but i dont like having to explain
OH my god!!! I thought I was alone!!! Thank you so much for this wonderful video!! Do you also have pain and leg spasms? Please let me know. I have never met anyone other than my father who has this terrible disease. Thanks.
William Schutz You are not alone in this journey. I'm 42 and have CMT1A. I haven't found another person in my entire city, let alone it's rare to find a good doctor that I don't have to keep explaining myself to when I refuse certain meds..... blessings to you and your father!
Angela Newman I have went as far as ordering etizolam for the keg spasms and pain that my hips have. I don't know how much longer I will be able to deal with the pain. Cannot really walk anymore. Not a life worth living. Thanks for your thoughts.😊
William Schutz I feel you. I'm sitting here in pain now trying to keep busy and wondering how I'm going to get through another sleepless night. I try not to complain and I keep telling myself its going to get better wondering when IT is ever going to come. I know other people may have it worst off so I try to be content and not complain, but when it rains it pours. My great grandma had one of hers amputated and my grandmother decided to have both of hers amputated and passed away a year later. I refuse to be like them. I'm not giving up....
Angela Newman I would love to have my legs amputated. I cannot sleep at all. Even when I order Xanax, those don't even help me sleep. I have been feeling really suicidal recently. This pain is just to much.
William Schutz I can tell from your story you feel down in the dumps. This too shall pass.... Think on good things!!! Don't be defeated and let this beat you. Keep praying without ceasing. There is power there!
i wonder if i have this yet 6 drs so far havent diagnosed me yet.. one with poly neuropathy the other mononeuropathy a foot doctor describe me with abiant gait and mild to moderate pes planovalgus on left foot and mild pes planovalgus on right. my legs are weak. i do not fall but losing balance been diagnosed with peronal nerve damage... does this sound like it? :(
Anything on fatigue???
Im 55.. I noticed drop foot about 3 years ago..got the cattle prod,and the needles in the leg at the doctor..The prod makes u jump,and they record it.. I guess i got cmt..????? Now after 2 years later,it seems to make my right knee cap buckle,and i fall..the left is better than the right... Obviously i cant jog..no muscle... i see my right leg is getting a little skinny.. And even with both legs walking,i kinda bend back my right leg,so the knee goes back and catches,so as to walk... Is this cmt?? Any advise is appreciated...Note,i tried a pill a day for a 4 day trial... just got done today..but i did notice my right leg,i didnt have to lock my knee cap as much to walk..and going up stairs i was always grabbing the rail.. now not as much.. same going downstairs,but i still grab the railing just in case.. You know,how you lock your knee al the way back,to lock your leg so you dont fall.... instead of walking normal,and your knee is bent out in front of you a little...I have to kick or lock back as like using my whole leg as a stilt..Any advise is appreciated..
I have cmt as well I end up getting my feet removed cuz of it fighting it with everything I have good luck in your battle
Our hands look the same
omggg excepting change gives me the most anxiety and handling my money :( :( the worsttttttt
How true, but you missed bad balance, and you fall over, and you can't stand on a beach as you lose your balance
This is like that "You might have CMT" thing... :)
Jeff Foxworthy style.
My 9 year old walks on her tip toes and can't stand on flat feet unless her feet are pointed outwards. Is this common in CMT?
Yes it is (I have cmt)
Grass allergy, ha.
The dreaded change!! Esp when the pile the change on bills ugh.
+amandalei535 Or when they put loose change on the counter and you are scrambling to pick it all up, especially on a cold day!
I pray to God to send medicine for your health
I ment Great Video
you know you have cmt if you move like a drunk 😣
You're so funny
Great film, can identify with a lot of that, especially the grass - I HATE grass! You forgot cobbled streets though, they're even worse - thank goodness I wasn't born in the 19th century!
Cobbled streets weren't on my mind at the time, living in California... but now that I live in England, they definitely make the list! ;-) Along with the grass! And loose gravel and sand!
Sand is the worst! Lol
Why is walking on grass problematic? Is it that the foot has to lift above the level of grass at each step?
Hema Ramaswamy Hi Hema. It's not walking on the grass that's the issue as much as walking on any unreliable surface, like grass, sand, pot hole ridden sidewalks. Because of lack of balance, we often fall when faced with even the smallest of steps/declines. Because of poor balance and foot drop, we constantly "trip over our own feet" making it hard to walk in general, but even harder to walk on grass, sand, etc. You'll notcie we have an exaggerated gait. That is overcompensating for our inability to lift our feet properly, ie foot drop.
Thank you for your response; I truly appreciate you making time to answer my question.
+Mike N I feel like you took the words out of my mouth. It is so awesome to not feel so alone! Thank you!!
+Hema Ramaswamy You're welcome Hema. It's my pleasure.
+Julie Stevens You're welcome Julie. I'm happy to help. Julie none of us are alone. We have each other, our family, friends and support groups. You can always reach out to me if you need someone to talk to. :-)
Threat video
Gesture typing on Android is hugely better.
хотелось бы услышать на русском языке
Fucking disease. I wish I had cancer.
+Glamzar and +Eli Cass
Hello, can I ask which type of CMT do you have?
Wish you all the best!
big ass house. be greatful. i grew up with cmt in the ghetto.