10 Things I Wish I Knew About Life With Charcot Marie Tooth Disease | Life with CMT

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 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 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!😊

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!

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....

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.

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'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...

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

HUMONGOUS HUGS!!! The Holy Spirit is working through you to help a lot of people.

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

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.

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.

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...

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!

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

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

I love this. I struggle with CMT 1a. And it’s recently been hard, thank you for sharing :)

This video made me cry, thank you so much for making this.