10 Things I Wish I Knew About Life With Charcot Marie Tooth Disease | Life with CMT
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- čas přidán 9. 07. 2024
- Living with Charcot Marie Tooth disease can be a life long learning process. There's so much you don't know and so much you pick up simply from life experience. Today I want to share 10 things I wish I had known about life with Charcot Marie Tooth disease YEARS ago. Hopefully, this helps you navigate life with CMT a little better.
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Brianna Engebretsen
16526 W 78th St. #165
Eden Prairie, MN 55346
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![Charcot Marie Tooth Disease - Symptoms & NEW Treatments! [2024]](http://i.ytimg.com/vi/HOebXZIZT4Y/mqdefault.jpg)
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Love your positivity, I'm 62, and diagnosed in 2000, have worked full time for over 44 years and brought up my 2 now adult kids, and have lived alone for the last 10 years , new chapter on life, now for the last 12 months work just 3 days a week and attend the gym for 2 afternoons a week, do as much as you can every day, as now I am soooo tired .
I was recently diagnosed with a mild case of CMT-1A. I'm just starting my research and came across your video. Your energy is contagious and I agree whole-heartedly about the positive attitude. Thank you!
I have a crush on someone with CMT and he lives miles away from me, and my whole life I have never heard this disease before. But because I develop quite soft feelings towards that person, I'll start reading and studying about it until we finally meet. Thank you for this video, this sure help me to understand him a lot better. :) I wish u nothing but all the happiness this world has. Have a nice day!😊
You are really a angel
I just found out a friend was diagnosed with this and wanted to learn more so I could try and understand. This was the first Video I came across, thank you for putting this out there.
I am so glad you found this video helpful 💗💗
Hi Brianna, I wanted to verify for you that exercise and a positive attitude work. I do a lot of aerobic exercise washing windows by hand ( up, down, back, forth) and don't overdo myself, but even more-so, I keep a positive attitude. I'm 61 and have to keep going. Some days are not my best but most days are not my worst. I'm lucky because I have learned about this, just in the last 14 years. Had the deformed feet since childhood, and found out I had CMT in 2010 at age 47. Have came a long way learning, and like you, wish I knew it was CMT way back in the 70's and 80's when I was still young, but am glad I consider myself lucky by keeping my self upright and just dealing with the many challenges CMT throws at me. Thank you. I will check out more of your CMT videos. Appreciate it. Eugene
Hi Eugene. Thanks so much for being here and telling a bit of your experience!
This video made me cry, thank you so much for making this.
You are amazing! Thank you for shearing! ❤️
I'm glade you made this video, I'm 69 years old and like you had to learn this on my own. Your video will help people get though this. This disease make you crawl up and hide somewhere. I'm glad to see support groups. God bless you...
I've spent 30 years and a bunch of Dr. visits trying to figure out what is wrong with me. For two days now I finally know it's CMT. Thanks for this encouraging video. Through experience, I have learned to do most of the "10 things", including the divine, which is probably what has kept me from being much worse. Now on to your other videos!
So happy to find another CMT person who had it since infancy. Everything I read talks about it showing up in adolescence or adulthood and being 'mild'. That frustrates me as someone born in the 1980s and diagnosed as a toddler when we didn't have a lot of research on the disease. Nobody else but a couple family members had noticeable symptoms so I felt alone. Thanks for your advocacy. I'm finding out more now as an adult and know we can do things to help ourselves, including easy stuff designed for 'elderly' and those with arthritis. Love my battery operated can opener! LOL Also have lots of jar openers and OT adaptive devices to make life easier. Before I was embarrassed to use assistive/adaptive tech but I embrace it now with gratitude. Whatever improves our life can only be a good thing. Exercise is very important. Thankfully, I was never told to not exercise. It definitely keeps what function we have longer than if we just sit.
OMG! I consider my coming upon your video today is a huge gift from God! I can totally relate to everything you are saying. You are doing an excellent job of exhorting and relating. Here we have been feeling alone in this and who would’ve thought that there are thousands of others watching this video! Can’t tell you how grateful I am, you have opened A wondrous door for me today.
Waking up to your comments made my day. I am so glad you found this helpful and inspiring💗
Just love what - and HOW - you say that in this video♡♡♡ Especially things #1, #7 and #10. I got even tears in my eyes, it touched my heart. I also felt this way for many many years and thought that I was alone. But I am not! And I absolutely agree with your thoughts about the right attitude. It's literally EVERYTHING.
I remember one situation a few months ago where I was at a bus station and some sorrow, sadness wanted to come up. It's just a split of a second where you decide - you let in sad thoughts and they bring you down and attract even more sadness OR you send those thoughts away and DECIDE to feel better, take in good thoughts and let again the sunshine in your heart. When I in that certain situation decided to change my attitude I felt how something in me/around me also immediately changed. There not far away from me were standing two foreigners who spoke Spanish to each other and were waiting for a bus, too. Just a couple minutes after I 'switched' again to the inner positiveness and inner joy there started - as if from itself - a conversation between us and and it was sooo nice! So nice not only for me but I guess also for them because they almost missed their bus because of that :D And I realized - YES - it happened only because I changed my attitude. If I would stand there feeling sad, most likely it wouldn't happen because I didn't radiate the feeling or impression that I'd like to talk with anybody in that moment and I would not want that also.
It's just a small example but it was so important to me and still is.
Thank you for this video. Love and light to you, beautiful soul
aww thank you. I have this and it’s great to hear other people talk about it. I’ve spend so many times crying because I embarrass myself from walking or tripping. I work at a restaurant and I am constantly dropping plates and have a very hard time walking while holding things. I love this video
You're so welcome! Keep your head up! You've got this!
Thank you for this video! I’ve had a very hard time feeling alone in this. My mom was adopted and we don’t know the history about it but I’ve always struggled with my emotions about CMT
I did NOT expect anything in this video to apply to me... and then you come in with #10. I should've known Tough Love Brianna was going to come out.
Obviously, I don't know anything about what life with CMT is like. As far as I know, you'e the only person I "know" who has it- and I'm fully aware that there is a difference between hearing you make comments on your "CMT hands" and actually seeing how it it affects your life. It's really nice getting to learn more about this side of your life.
And even though you have a disease that makes you physically weaker than the average person, I'm still inspired by how strong you are. [And I'm being perfectly honest when I say that, in many of those moments, I completely forget you have CMT. Yes, I have had a few "What's my excuse?" moments where the fact that you have this struggle has come into play, but MOST of the time, it's YOU who inspires me- and I don't think it would change CMT or no CMT.]
I guess I'm seeing the point to that whole "positive attitude" thing....
I’ve got CMT and the symptoms can be devastating. I’ve been aware that there was something wrong with me for about 20 years. You can push against the pain, be active try to stay away from medications as long as possible. I try to be focused spiritually and know God is in control of our lives.
I just want to say thank you so much for making this video! My daughter who is 17 has CMT, seizures, developmental delays, speech and language delays, and also hypothyroidism found your video and made me watch it.. It made me so happy to see her going, "I fall all the time too!! and I can't open stuff either!!" She got so animated and excited to watch you. She knows no one else with her condition so this was really great for her to see. Once again thanks so much for making our day! God bless.
This makes me SO very happy to hear. I hope finding my videos helped her feel not so alone 💗
Excellent video with sound advice.
I love this. I struggle with CMT 1a. And it’s recently been hard, thank you for sharing :)
You’re so welcome.
This video is pure gold. Thank you 🙏
Glad you enjoyed it!
Great video. You're a wonderful communicator with excellent content. Also bonus points for good production value (40 years in TV production & 66 years with CMT-1A)
Wow, thanks for sharing your story and knowledge. And especially your positivity and motivation :)
You’re welcome. Thanks for watching!
Wow, thank you for this video, so motivational ❤️. My husband has cmt and I'm willing to fight with him every step of the way!
HUMONGOUS HUGS!!! The Holy Spirit is working through you to help a lot of people.
I have CMT1A, diagnosed in 2014. Glade I found your video. Thank you for being informative.
Hi! I'm glad you found the video helpful!
Yes I was told not to exercise all of my life also. Not only that but that if I overdid it I would not gain my strength back. Creating an exercise routine in my life now is difficult after all of those years of conditioning but thank you for letting me know that there are others like you know mother who are making the same decisions to thrive.
I was diagnosed with this in 1983 when trying to join the navy..I was rejected...Im 59 now and struggle with the disease. What helped was working out. Last 2 years the pain has increased and cant work out. I strech everyday...Thanks for the video...
Hi Richard, I also tried joining the service in 1983 (air force), and was rejected due to my deformed feet. now that I am 61 (looks like were the same age), I'm looking for many alternative exercises I can do to stay upright. Your comment just caught my eye, and like Brianna said, we're not alone hey, it gives me comfort only that I wasn't alone in that scenario
thank you for this ❤️
You’re so welcome!
Thank you for putting this video out. I am not fully diagnosed but all the symptoms align and my Orthopedic surgeon recommended testing. i go to the neurologist Oct 4 and am doing lots of research. i believe i was miss diagnosed many years ago with club foot.
I'm a bit late to the party but I seriously LOVE your channel and what you're doing! I've been tested for CMT in the past because I have nearly all of the symptoms of it, it turns out though that I don't have it but I do have Ehlers-Danlos Syndrome! You really are bringing together a community of people with multiple different chronic illnesses and even those who don't! Keep up the amazing work! :)
EDIT: in an ironic twist of events, several months later, I've started having a lot of new symptoms and my neurologist now _does_ think I have CMT
Thank you so much for this comment. It means a lot.
@@DivaandtheDivine of course!! :)
Thank you
Thank you for this video. I have CMT to :)
I am almost 64 and just found out I have this. It has affected my feet. I always wondered why my feet were shaped the way they are. My feet hurt a lot and I have insoles for my shoes but the pain is bad.
You are Great. Thank you. I have Charcot Foot and working on it continuously in a positive manner.
YES!! Love this.♥♥♥ #CMTWarrior
The thing I most wish I knew when I was diagnosed, is the importance of exercise. 100% agree that it is our best tool to fight this crazy disease, and it was never encouraged by the doctors I first saw as a teenager. Now that I've committed to a life of activity, it's been life-changing!
Also, I wish I knew that while, yes, life is going to be different... it can still be FANTASTIC.
Thanks for this I was just diagnosed after my EMG a week ago
Welcome to the CMT club. What type?
Thank u Mam for your review ❤
My pleasure 😊
Fantastic you can’t belive what yo ur are doing to me. I am just learning about this disease which is why this is so crazy
I’m so glad you’re finding my content valuable.
You are fantastic at speaking in front of a camera! I hope you get more views and subscribers.
Thank you so much, Veronica!
Thank you. 💕🥰
Thank u I'm young and I'm glad I know now cause I have CMT type 2 thank u sm
My four year old daughter just got diagnosed with type 1A I’m nervous, scared, for her. Thank you for this video. Going threw all the appointments & processing all the information is so overwhelming
Mayra,
I've been dealing with CMT FOR 50 odd years !
It saddens me to hear about your
Bubba , I can only hope that you have the sense to be like my mum and dad !
Don't wrap her in cotton wool ! But keep an eye on her ! Encourage her to have
A Go at things but don't
Go off tap if doesn't succeed !
It takes a CMT Sufferer 2 to 3 times the energy of a
Normal person !
It's not easy for parents or the kids siblings and friends inclusive !!
CMT doesn't care who it screws over Have a look at
Country singer
Alan Jackson he has been
Only been diagnosed with CMT in the last ten years !
So from me in Australia 🇦🇺
All the best for your entire
Family ,
Please read my comment above it's under Jacqueline 7919❤
Thanks!
I'm 58 years old and I found out I had CMT in my twenties after my first child was born in 1986. In 1988 I had my second child and I noticed that she was having a difficult time trying to walk and we were very fortunate to have a pediatrician who had been head of Neurology at the University of Washington Hospital in Washington State. When she did walk she walked on her tiptoes that's a good indication. He did MRI on her as well as the nerve conduction study and yes she was diagnosed with CMT. Our plan of action was that she was going to go to regular school half of the day and she would be picked up by a bus at our house and they would take her to her regular school. And then at the halftime of the day a bus came and took her to another public school but this public school had a pool they had fine motor skill therapist and gross motor skill therapist so she got involved in an extensive amount of therapy at a very young age she did wear braces up until she was about I would say the sixth grade to keep her ankles from flopping too much. And I tell you now her as an adult you would never even know that she has CMT. Her leg muscles and calf muscles are beautiful, her hands and arms she does not have any issues with trying to hold cups or writing she can do nail work on fingernails that is so intense and complicated and so intricate with a steady hand it is absolutely unbelievable!! I could never thank that doctor enough for what he recommended for my child that saved her from the pain that I've had to go through as an adult. There's also a caveat here I have a sister who had two children and I told her what I did with my daughter and begged her to seek help for her kids because even her child at 3 years old his little ankles were so skinny you thought they were going to break like sticks he had difficulty walking and we all know the symptoms of CMT he had them all. Then she had a daughter and the same thing I asked her please get her into early therapy she did not want her children to even know that they had CMT because she felt that they may use it as a crutch in the future and she was also worried and concerned about insurance issues pre-existing conditions. Well fast forward to her daughter being around 25 years old ended up having to have complete foot surgery on both feet which meant every bone in her feet had to be broken and put back together because they were so Hammer Toad and arched she couldn't even walk. And that child is in so much pain all the time it it breaks my heart. So any parent out there that has CMT themselves and you are going to have a child or you have young children please try to do what I have done based on a recommendation from a highly qualified neurologist and get your kids therapy occupational therapy Physical Therapy pool therapy anything that you can think of to help them succeed in life now and in their future.
Thank you so much for taking the time to share your story!
Thanks a lot ♥️
I have this to
I do have it that for a while and I knew it but it went untreated cuz nobody could figure it out finally got figured out thank God and I'm still suffering the consequences so I broke both feet and I broke my back twice so I've got a lot of things to work on
I was diagnosed in 1984. No one in my family has been diagnosed with it. I have felt alone for a long time. I just found the Facebook groups in the past year as the disease has been progressing. I've got fewer problems than a lot of my fellow CMT warriors.
Thank you 🙏❤️🙏
You’re so welcome!
I have this disease! I can totally relate!!!!
I found this very inspiring on a day when I was feeling down about my chronic Lyme disease symptoms. I thank G-d every day I ONLY have chronic fatigue - type symptoms. Some people have chronic nerve pain or heart or eye damage.
I have to choose daily between exercise to try and improve the situation, or working or doing housework and taking care of my family.
I got the flu shot yesterday and it wiped me out so I was particularly whiney in my head. But thanks to your vlog I got up and did what I could in the kitchen. I can only work a few minutes at a time, but I’ll make progress if I keep doing those few minutes all day. 🤗❤️
I’m glad this helped you. Also, on this channel, we say God with all 3 letters and proudly! 😊
Diva and the Divine, do you find the dash offensive? It’s not meant to be. In my religion it’s a way to show respect. If we write the full name out the paper/item becomes something we don’t want to then destroy. But if that bothers you I’ll just avoid the word. Sorry! I’m quite religious and try to be modest, so we have a lot in common.
Suki_Loses_It oooooh well then it’s all good! I just don’t want people to shy away from freely saying God for negative reasons! If that’s a sign of respect for God, then go for it. There’s no shame in giving God all the glory here!
I agree you must exercise to keep the muscles you still have strong and functioning. If the nerve is dead and the muscle is dead the exercise will not bring those particular muscles back to life.
CMT1A at least is progressive and in varying degrees can be crippling.
I have always been extremely active, slim and ate as healthy as I knew how and could do.
I had 4 kids and raised 5 kids, was also a foster mom, soccer mom and then took care of my mom who lived with me her last 3 years.
I was so busy chasing kids, cooking, cleaning, taking my kids to their sports clubs I didn't have time to do formal exercise.
But trust me running a vacuum cleaner, mopping floors, scrubbing bathrooms, making beds, dusting, carrying loads of laundry back-and-forth through the house and up-and-down the stairs for a large family is a workout. Just as growing, harvesting, cleaning and chopping vegetables and so forth is also a workout. At 64 my work load has scaled down and because of severe muscle loss, injury loss of my balance I use a walker or wheelchair but still keep active as my body can handle.
I agree with what you said but can't say this exercise, positive attitude only applies to CMT but to life in general.
MY daughter has a great positive attitude, was diagnosed as a child with CMT1A. Now at 33 though she has very visible signs doctors act as though she is imagining it.
She is requesting some sort of paper stating her diagnosis because multiple others like the DMV, her job (to give her closer parking) have needed this from her and the doctors refuse to put in her records to diagnose her.
It took her over a year to get a doctor to find out if insurance will cover her having a genetic test or other tests like EMG, Nerve conduction done but is still waiting. She told me that all they did when she visited the doctors was take her blood pressure and say she looks good and walk out the door. No one has examined her extremely high arched feet nor has asked her to walk to check her noticeably affected gait or footdrop or checked her reflexes, her waning strength or progression anything like this. She is currently pregnant and has fallen multiple times but they don't seem to care. She needs a handicap placard for parking at work but they don't help. Once again she has to start over and try to find a knowledgeable doctor. It would help if the doctor would admit they have little knowledge in diagnosing or caring for a CMT patient up front instead of saying they are knowledgeable.
Her 11 year old daughter also has very obvious symptoms and her pediatrician keeps ignoring her symptoms and saying she is fine.
It seems things were better in the medical field understanding of CMT 30 years ago than now.
They once offered my daughter orthotics, bracing but she was walking OK without it, playing sports then. She didn't want to have her feet operated on, she wanted to wait and that was fine but today they don't even care that she's struggling and falling.
I wonder are doctors losing interest in this condition because there is no cure?
I just tried calling our geneticist who had moved to New Mexico but diagnosed me, my sister, my brother, my son and daughter, etc. 30 years ago for advice and he has retired. Oh, how we miss him. Please wish us luck in finding someone in Virginia who can understand CMT.
Is anyone else experiencing these types of being pushed aside by doctors today? What did you do?
Thank you for sharing some of your story, Tracie. I know that the activity and positive attitude definitely helped you throughout the years. I don't know how close you are to the capital, but there is a CMT center of excellence in Washington DC.
@@DivaandtheDivine 4 hours and I can no longer drive and travel is difficult. Also, 4 hours for my daughter who needs a good doctor but is also a working mom so not realistic.
I and my family used to go to the NBA clinic in Norfolk and that was pretty decent just for diagnosing and documenting progression but that was all they did.
I don't think it's there anymore. It's a whole different ball game to have CMT but also have to work to support and or physically care for your family in spite of disability.
You need doctors to be close enough to go to and be back home the same day within a few hours. It's definitely not the same as having CMT and having a care giver or helper.
I think one of the hardest things is to have CMT enough that you are quite noticeably physically disabled or challenged and have people, even family act like you're putting it on or you're just clumsy instead of understanding that you do actually have a condition that is affecting everything that you do.
Especially when you are working very hard everyday.
Still we must keep our chin up and keep on keeping on.
You can get a genetic test through invitae for about $100, and sometimes free if you show relatives have it. They aren’t always accurate as you can have cmt and not always test positive, but it’s worth it to get the test because if you do get the diagnosis, doctors can’t ignore you.
Thank you very very much🙏🤍🤍🤍🤍🤍
You’re so welcome!
I have it too. It's a struggle, especially in summer. I can never wear short trousers because my lower legs are really skinny.
my legs are super skinny too but I've found that working out has built my leg muscles so I still wear shorts and you should too! It brings out my confidence because at the end of the day if people wanna judge me because of something I cant help then oh well to them lol! we gotta just live our lives cos who knows when they'll end!
2:52 used to cry alot because of this , wait I am about to cry thx 😀
Imagine being diagnosed in 1971. I was 6 years old.
🙏🏽
Amen!
My family struggles with CMT and mine has gotten a lot worse over the years but I didn't realize until I just got a retail job and I wasnt able to walk after work, they wouldn't give me any accommodations so I had to quit after 2 weeks, it really crushed me
Yes i have been taken by surprise by some things with CMT, just like that, or fallen and found out I have now reached a stage I cannot get up, that was a shock..
I just got diagnosed with CMT a few months ago :(
I started giving my falls a score like the Olympics! I've had a bunch of 10's most are somewhere between 3 and 8! I was pulled off the step outside my front door once by a cute doggo who was so excited she just ran wish her leash snuggly in my hand! It must have looked hilarious! I'm laughing at it as I write this. I knew I was headed for the ground and in a hurry, so something in me told me turn around. I turned around and instead of splatting face first I hit the ground on my amply padded behind! Still hurt like crazy but I was laughing so hard thinking about how funny it must have looked that there was no room crying and feeling sorry for myself!
Diane! I LOVE that attitude! Scoring your falls like the olympics?? Hilarious! You will go far because of your humor and positivity.
We have just learned that my husband has CMT. It has been devastating to us both (I am age 72 and he is age 77.) For me it has been GRIEVING or the loss of our retirement dreams. We had built our entire retirement years and plans around enjoying the out of doors; hiking, walking with our dog, birdwatching, gardening, and everything that represented the freedom of using his feet, legs and his lack of mobility. Then there is his lack of knowledge and ACCEPTANCE OF THIS DISEASE. His lack of initive to research, to fight this or even treat this disease. The last 10 years have been a struggle with his growing cognitive decline and now this.... Its almost too much to bear. I think he is in total denial and is doing nothing about it.
Wait..how is he doing physically? I only ask because you can't (well..you CAN, but you SHOULDN'T) let the simple act of a diagnosis slow you down. If you're still physically able to do the retirement things, but simply knowing that you have a thing (versus not knowing and assuming you're good to go) should not be a reason to give up. Staying active and following your goals and dreams is one of the ways to keep this disease from keeping you down.
Me and my family all have it
It’s weird how just unknown or not recognized cmt is in the disorder type universe/records to where my great aunt knew that cmt isn’t very preventable so instead of getting the surgery my dad, grandpa, uncle did she decided to just live with it wheelchair bound and the ages my uncle dad and grandpa got the surgery were 19 (uncle) 56 (grandpa) 41 (dad) and soon to be me when I get enough to afford it and the physical therapy
I have cmt and I'm doing good with it thank you for sharing this
That is so great to hear!
@@DivaandtheDivine I I'm 16 years old and yeah I'm just doing good and keeping up with my excersize getting stronger
@@DivaandtheDivine yeah I'm doing good with it
Yea I’m twelve and I had comfort since I was born like I’m sure your born i don’t know much about it and we’ll it’s like horrible cause because of can’t I fell on my nose and it was my fault whh my nose got hurt it was fine but lol thanks for this vid
I was diagnosed in 1973 at age 16 Hereditary Peripheral Nerve Disease.
Thanks for sharing that, Tracie!
I have CMT to
It is severlly messed up to have cmt. Wearing afo.having your knees.ankles.and feet go out
Plus my hands are drawing up
Also no one in my family has had cmt and I'm thankfull for no one else having it
Does anyone know where I can get plastic piece it goes between foot and the leg on afos please help
Hi am 12 and when I was 11 I was diagnosed with CMT.
Hi Scarlett! I’m glad you’re here! Do you know what type of CMT you have?
Lions Mane and other mushroons contain elements that help to regenerate the nerves, and improvements can happen within a couple of weeks already!
I took Lions Mane for awhile and didn't notice any significant changes, personally, but if they help you that's great.
I have permenant scars on my knees. I have given up on embarrassment and just laugh when it happens now.
i just got diagnosed with CMT I'm 14
Welcome to the club!
I have it
I have CMT
My 11 year old son has cmt. He inherited it from his dad who inherited it from his dad. I didn't know much about it because my husband didn't really want to acknowledge it or be defined by it so he ignored it, but our son seems to have a heavier dose, with feet swelling, speech affected, muscle pain and really weak hands. We moved to Panamá 10 years ago and I have been trying to find a child struggling with it as well so he could have a buddy that understand. Thanks for these tips♥️ I recognize your hands.
My son is 12 and has cmt, hypermobility, scoliosis, hip dysplasia and sleep apnea.
He was diagnosed at 5, and i was diagnosed a few months later at 27. I had always struggled, but had never heard of cmt. At 30 it hit me bad, and my son just had to have both of his legs broken for the second time.
It's pretty irrelevant but I have just had some pretty in depth tests. I was told it could not be passed from the father/just a mother
I have been diagnosed with CMT however with me because I don’t totally fit into one group or another I have 4 to choose from Friedrichs ataxia or Hereditary motor and sensory neuropathy spastic paraplegia type 5 or cmt . Any insights good or bad would help . Oh yeah I’m 50 this birthday and I’m in a wheelchair with arthritic knees You posting this helps me so thank you 🙏
The only thing I could thing of is to get genetic testing done. This will for sure tell you not only if it’s CMT, but what type!
@@DivaandtheDivine I did the D .
My feet are arched not that high but it’s not normal. I’m using these braces for it and they said it can work it I jusy use them regularly. The doctor said I might have CMT. but I have to go to another doctor to confirm it. Hopefully it’s not that, but if I do I have you!
You do have me! It’s really not horrible, especially if you are willing to put in work to help your body!
I'm wondering if some types of exercise makes HNPP worse.
I got genetic tests done since this video and have one of the more rare CMT related variants.
I have cerebral palsy spastic diplegia and it has caused neuropathy and everyday it feels like it is spreading everywhere. Having faith and laughing still and still being able to do my hobbies makes me be able to keep my head up. Meeting more chronically ill people has encouraged me to share my story more because when I was younger I felt like I had no one to talk to and no one to understand my pain.
I have CMT1B, and would love to see your exercise routine. is it possible you share your exercise routine?
Absolutely! I will add that to my list of videos to create after I come back from my hiatus in June!
Also, it’s refreshing to see another 1Ber. I feel like everyone is something else. 1B unite!
I have cmt also born in 86
Well hello! Welcome to my little corner of the internet!
Brianna do you have a strong urge to stretch your legs often and esp when standing up? I have cmt 1B and use a rollator...my legs are so bad. Do you have cramping & fasciculations/twitching??
Oh yes, daily stretching is a MUST
Hi pls help me I have same problem in my limbs .i do not know English so how can I contact to you
What kind of help are you looking for? I am NOT a medical professional of any kind. All I’m sharing is my personal experience with a disease that varies greatly person to person. That being said, you can email me at Divaandthedivine@gmail
Exercise may help some people but it won’t stop the progression. Stretch, make your knees pop, flick your big toe until it pops. Fight the atrophy that is Happened. Cracking and piping does not cause arthritis but it could help you from becoming deformed.
yes exercise will slow down the progression and certainly helps with keeping the muscular mass (however small it is) If you stop exercising you melt like ice cream in the sun.But i think you already know that ;) Exercise,exercise,exercise :) I am 68 and knew in 1970 that i had inherited CMT from my mother. Even if very painfull I do my best to stay active. Do not despair and keep going . And like you say ; stretching really feels good and helps a lot.
I too have CMT.... is there anyway I can prevent it from transmitting it to my kids.... I want to have kids but I am so afraid
There’s a 50% chance that your kids will get it if you’re with a non-cmt spouse
You can see a geneticist who can talk to you about this. For my type, 1A, they offered genetic testing of embryos in vitro, and then they only implant the embryos without CMT. We could not afford this so we took a chance twice. My CMT is very mild so we hoped it would be mild in our kids. They are 17 and 13 and no regrets. They do not want to be tested for it. One has symptoms one does not.
I wish i'd known that i would be in a power wheelchair by my mid 50s i would have bought a wheelchair friendly car as my last car, now I have no way of getting my self out... I wish I'd known I would not like be my mother, she is less affected, most of all my wishes i knew are all related to that... I also wish I'd learned to laugh at myself a lot sooner.
These are all good ones to add to the list, especially the last one.
I have this😢
Welcome to the club!
I have cmt and I get bullied for and when they ask why I’m so skinny I say I have fast matabliusn
I'm sorry they bully you. Don't be ashamed of CMT. Embracing what you have and working with it is much more productive than denying it. :-)
That was also my answer when I was younger.
I found this video after watching your iud video because I don’t want kids...... because I don’t want to pass my cmt onto them lol what a coincidence!!
I talk about everything on my channel. CMT, birth control, weight loss, the works!!
Ugh the tripping over yourself 😩 I know the exercise would help but the motivation is not there.
G,day to you young lady !
My name is Ken,
If you haven't guessed
From the G,day !
I'm an Aussie (pronounced
- Ozzie) why because we can
I was born in 1962 in
1967 diagnosed with
AND in the doctors word's
My parents were told
He has muscular atrophy
Or something ?
And that was it !
I've never been able to run
But through stubbornness
I did mountain climbing and
Repelling as a sport and recreation ! In 1976 I left
High school, got a job
Cleaning windows on
High rise buildings !
1983 started driving trucks
Around Australia,
I then bought and started
My own transport company
Driving Roadtrains
Check out Australia's biggest trucks on CZcams,
I did that until may 2020 when I realised I was getting really tired and aching regularly !
Unknowingly I think it was just the best thing to do !
Just to get out and do it !
I've recently seen a neurologist for the 1st
Time since I was a kid !
When I told him what I had
Done for my life,
He almost collapsed !
The moral of this my story
Don't be afraid to have a
Go and keep as active as possible for as long as possible ! All that
With no knowledge of
Any society's doing research on CMT, MD,
Or NEURO muscular disorders ! Until roughly 4
Months ago .
The amount of doors I have walked into because my hand dosent turn a door knob properly is becoming comical
all the doors in my house are the handle type ; no knobs for me :)
Getting braces Monday
Braces are life changing. Happy for you!
@@DivaandtheDivine do you know where I can get braces that ship internationally?
Little known fact about CMT1 that I learnt in 2021 by my dentist CMT can effect your teeth it sucks the calcium and enimal out of your teeth which cause weakened teeth and dental surgery.
I would check your dentists sources. The peripheral nerves (which are what is affected by CMT) don't have anything to do with the nerves in your teeth.
@@DivaandtheDivine CMT does not effect the nerves in your teeth it sucks out the calcium and enimal out of your teeth which leaves teeth weak and brittle my dentist knows all about this she knows about CMT very well because people with CMT go to her for dental work Ect
But it does not happen to everyone with CMT I know this because I've had to have major dental surgery because off the damage CMT done to my teeth I look after my teeth very well before hand and even now.
And another lady with CMT had to have all her teeth removed because off CMT I've been asked how it effects your teeth and I know it has nothing to do with the nerves as people might think it does because of how CMT Effects you body.
for us people that live with CMT we know the every day struggles the ups and downs that we face on a daily basis in the utter pain it can cause.
@@bubblesyoullneverwalkalone173 Interesting. I was going to say it's definitely not an issue of mine, and I had infant onset of CMT. My teeth are some of the strongest things in my body!
It is interesting actually because my widow teeth and other teeth are strong and they survived it just not my mulars and small other teeth.
@@DivaandtheDivine don't how this works but not everyone with CMT has their teeth effected my sister has it and she has no teeth problems it's odd
I have CMT to