Charcot-Marie-Tooth Affected My Breathing / My PSA + First Symptoms
ฝัง
- เผยแพร่เมื่อ 22 มิ.ย. 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 :-)
Instagram: @bethanymeloche
Facebook: / bethanymelocheauthor
Website: www.bethanymeloche.com
learn more about CMT: www.cmtausa.org
buy my book: www.amazon.com/How-Should-Bod...
Everything you mentioned are the things I have gone through for years, plus a lot more because I'm a lot older than you. (Nearly 78) I sleep with a Bipap machine in a recliner because I can't lay flat. Left vocal cord paralyzed. Muscles in my eyes to weak to hold them straight, prisms in glasses helps some. Talking on phone gets me out of breath, and I do understand about not being able to sing anymore, and I come from a musical family. I'm in a wheelchair now for the past several years. I have 1B CMT. Thanks for doing this video. I know I'm not alone with all these problems.
Thank you for bringing this topic up. I just turned 40, was diagnosed when I was 24 with type 1A and have had the same breathing symptoms along with being unable to breathe on my back and extreme fatigue.
I had solely blamed my fatigue on muscle fatigue. I have been sleeping for the last few years propped up, sitting up, or laying on my side with my elbow keeping me elevated, which has given me issues in my arms and shoulders. I prop myself up especially higher if I have a cold or flu as I find my throat stays clear that way or else I wake up choking.
My chiropractor has been very helpful in loosening my deformed ankle to give me more stability. Recently she has been trying to help me with the flexibility of my rib cage as a neurologist she consulted with suggested that the atrophy could cause a tight ribcage and cause less expansion in breathing. It's early days in trying this approach but I'm hopeful!
i'm so glad you posted this. Thank you - It seems like I'm heading the same way with my breathing very gradually.
My daughter just got diagnosed CMT yesterday and I am so sad inside I am worried about her and I just ran into your videos thank you for your videos and your bravery I hope and pray you, my daughter and everyone suffering from CMT get better and beat it 🙏🏻💜🫶🏻
Hi Dee, I'm so glad you found me. Please reach out (my email is on my website, bethanymeloche.com) if you have any CMT-related questions I might be able to help with. The CMT Association has a wonderful youth program and camp I'd highly recommend for your daughter, if she's within the right age range! Sending you both all my best as you go on this journey together.
I am 21 me too have CMT now I got the answers for all my weirdness
Millions of others share your "weirdness!"
Thank you for speaking out about this. I have the same thing and had to use a Bipap at night to sleep for many years. Cannot lie on my back. I was also told that it was rare and no one seems to know what the issue is? I have been trying to strengthen my diagram with swimming and didgeridoo. (There are travel size didgeridoos with not as much back pressure.) There was at least one study on it with people and sleep apnea. Thank you for sharing. It is good to know that we are not alone.
I’m planning to do a breathing video too!
Great job on this! (I love all your videos!)
Thank you for sharing, Bethany. I agree that it's very important to increase awareness within the community about the symptoms. Even if it's rare in the community, everyone should have all the resources they need to make informed decisions about their health care and opening up dialogue with their care teams.
Cmt effected my heart from childhood which in turn effected my breathing or rather more, my ability to get the benefits from each breath. my chest is large and lungs are healthy. My cmt only kicked in at age 34, so any deformity is minimal but I fight pain as my muscles pull on the bone , though I have always had foot drop from childhood. Im 8 plus heartattacks down, my brain and heart have stopped communicating on 36+ occasions which now is having an effect on my mental health. Help in the UK is nonexistant, they dont have the answers so you play the referal game. my advice to anyone is hitt the B vitamin trail and maintain an exrcise routene to keep the blood flow, good luck
Thanks
Thank you for sharing. My grandmother had CMT, and today I got back from the neurologist half-way confirming that I have it too. Waiting for the genetic test to come back for me now.
It's really helpful to hear what other people experience and how they deal with it, so thanks again for sharing.
I'm so glad the videos are helpful, I hope to make more soon! And I hope you get concrete answers from the testing.
Nice to see someone who understands, it's a strange life but it's taught me empathy.
I hear you, it's nice to feel understood. Wishing you the best in this strange life
I just got diagnosed after being sever;y ill for 8 years. Thank you for sharing I will be binge watching.
Aw, I'm so glad you finally received answers, and that maybe my videos can be of some support. I hope to record more in the new year!
Haha OMG u described all the symptoms i have and had for like as long as i can remember
Thank you.
Thank you for sharing this info. We need to share because we learn from each other. I have never been helped by doctors so it is reassuring to hear others with this disease. I have CMT 1B MPZ (Myelin Protein Zero). Keep it up and thanks again!!!
Thank you for this sweet comment! I absolutely agree we need to learn from each other!
A couple of years ago I had and still have problems taking a deep breath my vocal cord is paralysed I am always out of breath my sleeping pattern is very bad I might get about 3 hours a night, I can relate to a lot of what you have said
Hey Bethany, I was diagnosed with RLD and although my lungs themselves are healthy, they don't expand properly due to my chest wall deformity. I had limitations growing up but I was never hospitalized for any respiratory issues until age 13, and then not again until age 28, regardless of having longstanding shortness of breath. I've seen many physicians, but no one who is an expert in the respiratory consequences of the condition I have. Pretty much learned everything through Google, including how to manage my BiPAP machine as the sleep studies I've had were useless--they are not programmed for muscle/diaphragm weakness.
I have had the same diagnosis. My pulmonologist put me on a bipap for diaphragm and cough assist for lung expansion therapy. I still get winded and heavy chested but not as bad.
I came to known 2 years ago that i have this disease and i dont know what to do about it ... there's no cure ...im really depressed
Hi Bethany, I have a cough assist machine, do you have one. It really helps me I use it twice a day for 5 cycles. My phrenic nerve is affected I have hemiphlegia of the diaphragm. I use a bipap machine overnight or even if I am lying on the bed. I have a profile bed which allows me to partially sit up. Do you have any of these?
P.S I love your videos they are very helpful xx
I actually do have a cough assist!! I made a separate video on it and still use it every day. I've also tried bipap but had a terrible time adjusting to it. Thanks for mentioning the profile bed - that's a great piece of equipment to be aware of! xx
I'm so glad you enjoy the videos! Thank you for sharing what works for you!! :-)
I have cmt n i have restricted lung disease too ive had colds damn near kill me bc they turn into horrible pneumonia n bronchitis. I have terrible rare cmt did symptoms tht im so over hearing extremely rare symptoms tht are rare to me! I get winded eating!
I'm so sorry to hear this. Do you use a cough assist or any other breathing devices?
I have Charcot Maire tooth disease my type is 4C I am in the wheelchair for good
I have 4c on bipap, deaf, paralysis of vocal cord, weakened diaphragm, total body loss of sensation, tongue wasting, in a wheelchair since I was 24 and I am 53 now. And there was me thinking it only affected hands and feet 😩
What type of CMT do you have?
1A
@@BethanyMeloche They think I have cmt2b1. I am awaiting a muscle biopsy. I have gotten progressively weaker and must use a wheelchair. I also have asthma like symptoms.
..... this sounds too much like me..... :/