I am 10 years old and I have CMT type 1a and life is hard for me at school but I stay strong and keep going
@dannieryce9687
Жыл бұрын
Keep up the good work. I love your plan.
@b.ellicott607
8 жыл бұрын
I enjoyed your video. I was only recently diagnosed (at 46) but have had the symptoms and my first surgery at 13. My recent surgeries were on my hands and seem to have had no effect. I feel alone a lot of the time in my disease, so videos like this help. Thank you.
@deepzepp4176
Жыл бұрын
So pleased to hear someone doing a video on subjects like this, without the “depressing piano music”. They seem to think that everyone loves that style, when they, really, really don’t.
@kimberleybasta9959
5 жыл бұрын
I have had CMT1A for 54 years now. I am now in a power wheelchair also. I'm on percocet, lyrica, cymbalta, and cannabis oil.
@kimberleybasta9959
4 жыл бұрын
@@babywhalecrypto1346 at MacMaster Hospital
@shellycolson9365
Жыл бұрын
What cmt type are you ?
@kimberleybasta9959
Жыл бұрын
Shelly Colson I've got type 1A
@MaraTheBrave
5 жыл бұрын
Obviously, I’m late to find your video. I have the disease too. The worst thing is depression about ability. Over the last couple of years I’ve experienced hearing loss due to CMT. Glad to see you’re playing guitar. I wish you all the best.
@dannieryce9687
Жыл бұрын
Good job. Me to. At 70 y.o. What a ride, still learning why things hurt the 1970's. Thanks for sharing.
@maryrichmond5080
6 жыл бұрын
being diagnosed young and getting regular check ups and starting to correct the deformities at a young age really helps even if it's always gonna be there getting worse staying on top of it is so important. thats why awareness is sooo important! I feel like if I hadn't been diagnosed so young I'd be so much worse off than I am today.
@rockyseez2654
6 жыл бұрын
Good Morning Sam I have just watched your video and found it very interesting and humbling. My son Joseph has cerebral palsy, micracephaly, epilepsy, mental and physical delay but has recently been diagnosed with CMT / HMSN as well. He is 19 years old - and does not walk or talk. The surgeons have just told me the combination of cerebral palsy and CMT means that it is extremely unlikely that he will keep his legs his entire life. Obviously I find this devastating. Joseph has very high pain thresholds so the god send is that he does not feel pain. His hands and feet are effected and his chewing (he now has a PEG feeding tube to aid his nutrition). Just wanted to say thank you for your video - and that you are doing a fabulous job sharing because knowledge is power. PS Star Wars rules in this house too !!! PPS My eldest son is 23 and plays guitar in a punk and ska band in Brighton !!
@shileenjacks4315
Жыл бұрын
I just found your site tonight it was diagnosed with me about 4 years ago as a child I knew something was wrong but I didn't find out I had it until I was in my late 40s. I'm now 53 now. I had 2 of the surgeries done that you were talking about on my right foot and it went horribly wrong and now i can barely walk on my right side. They gave me a brand new knee before they knew. I had CMT which caused even more problems with me And my balance is getting worse. But I'm glad I stumbled across your KZitem. And it's nice to know that there are people out there that are like me. And that I'm not alone, and I'm still learning and trying to understand this disease, thank you.
@irenatarvid
Жыл бұрын
It's just a joy listen to you, and you are absolutely right, live life and enjoy everything.
@alexandradrea.m2348
2 жыл бұрын
Hi! American here. First of all, the meds have the same names here. Secondly, as someone with CMT due to a gene mutation, I relate SO MUCH to a lot of the things you were saying. All the other videos about cmt are from the standpoint of drs or ppl that dont have it, but hearing you makes me feel understood. thank you so much!
@bbourgault72
3 жыл бұрын
I was diagnosed with cmt in 2005...long story short, incorrect diagnosis. finally got correct diagnosis last year, late onset Krabbe disease, globoid cell leukodystrophy. I was guitar player but both of my hands are completely paralyzed. legs in pretty bad condition also and like you, I am homebound. Glad to find you on here. Keep pushing on...
@Ihamdrumm3r
6 жыл бұрын
I was diagnosed as a child when i didn't really feel it as much but now that I'm 23 it's taken over my life, and of course not in the best way. I had surgery a few months ago with the tendon lengthening you mentioned, and it seemed to help with the early morning pain of getting out of bed but that's about it. Depression and finding a career that gives me meaning is my most difficult problems I face today but your video truly has helped me come to terms more and more. Thank you
@eccentricman87
8 жыл бұрын
Well said! There is far too many depressing disability videos on here and this was toned perfectly. Keep it up.
@SamBosworthMusic
8 жыл бұрын
+Ted Shiress Thanks so much, means a lot!
@tommoso55
7 жыл бұрын
Hi Sam.. Brilliant vids... I've got the dreaded lurgy too ie CMT.. Been fighting and trying to hide all my life until a few years ago and thought bugger it just accept it so I did... Nowadays I don't mind who knows and even tell people I'm not drunk I've got CMT... mind you that's not always the case as sometimes I am drunk with CMT..LOL. Cheers ol lad Tony
@asemdaghistany8610
7 жыл бұрын
you have a boss attitude about this... Keep it up man
@userAl9893
2 жыл бұрын
thank you for making videos! my boyfriend struggles with CMT and I want to understand at least at a basic level what he is going through. I also want to help him how much I can and learn what he needs my help with and also the things he is able to do :)
@vanzandtVids
8 ай бұрын
Thank you for sharing! This video is so informative 👏 My 3 year old has been screaming with leg pain. She was diagnosed with CMT. I didn’t know they had a foundation. America tramadol and ibuprofen is used here too but for little ones it sucks! Only Tylenol or ibuprofen. Doesn’t shake the pain for her. God bless and prayers for you and your family.
@delrosio209
7 жыл бұрын
You are awesome! I myself am waiting to see where is it that I fall under. This is the way I also see my CMT just like you do. I'm learning a whole lot on the subject, but you are correct, mostly all the videos I see are too sad and depressing. Thanks for putting a better spin on things. #CMTWARRIORS💪💪💪
@wendabonazza704
7 жыл бұрын
del rosio please check out my CMT FB page. feel free to like and share your story m.facebook.com/Charcotmarietooth-Girl-Philadelphia-Pa-808340822677664/?ref=bookmarks
@earthlyessentials3547
8 жыл бұрын
Finally!! A comment on the knee popping out! My daughter (12) was diagnosed four years ago. Like you, we walked out of the Dr. office being told .... she has CMT. See you next year. I have been searching for some support for children and there is not much out there. Thank you so much for posting this. I can totally relate to a lot of the points you made. Thanks for sharing.
@LAGoodz
6 жыл бұрын
Hey Sam, so pleased to see your video! Thank you for sharing. Like yourself, I guess I lived with the early signs of CMT since adolescence - things like numb but painful feet. I’m 42 now, but a few years ago I became really flat footed and was constantly falling and tripping over. My knees really suffered as a result. I pretty much bottled it up and hid it from family and friends, but it got to the point where I couldn’t get to work. Luckily I got referred to Neurological team at Addenbrooke’s hospital in Cambridge, they were fantastic. Like yourself, I was diagnosed through genetic test. I guess we’re lucky we have that option. My consultant explained that wasn’t possible to do 20 years ago. I initially struggled to walk and relied on a wheelchair, but since having my AFOs (called BlueRockers!) I’m able to walk again and build up my leg strength. Physio is key in my experience. Thanks again, for posting! Luke
@PeriEyes
4 жыл бұрын
I have CMT to. Since a young age I always had bad feet and bad balance. I got surgery on my left hip when I was 10 years old but after 3 year I had to have another surgery but was done badly. I had a hip replacement at age 21. Inbetween those years I had alot of kneecap dislocations. Really painful. I am not in a wheelchair but I do have more trouble walking. I use to be able to walk indoors without shoes but now I can’t at all. My hands are not to bad but I do have loss of strenght in them. My feet and knees and my hip joints are the worst. Big respect for you with also dealing with it.
@kimberleybasta9959
5 жыл бұрын
My secret is NEVER ADMIT DEFEAT. Always fight. When I do go, it'll be kicking and screaming LOL. I kid you not my friend 💪🦈🏥
@mommahottness
8 жыл бұрын
Thank you a thousand times for making this video! My 11 year old son was just diagnosed with CMT. I was tested today and believe this is what has been going on with me my whole life. Your an inspiration ! Thank you!!!
@SamBosworthMusic
8 жыл бұрын
+stephanie beth No problem at all, just remember it isn't the end now he's been diagnosed, it's the start of an attitude that he can do anything no matter what :D x
@njhmd8783
6 жыл бұрын
you are a grateful man
@tenniscourt5831
5 жыл бұрын
Good video. It runs in my family for generations. I do not have it, however my brothers, sisters, dad, grandma and nephew do. I'm going to show this video to my nephew. He's a lot like you....a handsome artistic soul. My family always called it "The Magee walk" because they were never formally tested for it. Even though my dad's doc said it was neurological. So fast forward 50 years......My daughter's Standford Neurologist (for Epilepsy Seizures ) asked about genetic disorders in our family and I described it and she said, "Oh Charcotts." So I've been researching for my siblings and nephew. They seem relieved because their regular doctors have told them its everything from flat feet, Muscular Dystrophy, MS to being drunk. (Really Dude? You graduated medical school?) Keep up the educational videos....you're good with public speaking btw. And keep active....my siblings ski, snowboard, kayak, ride motorcycles and go camping. (in a motorhome but camping) It's not the worst diagnosis. You will live a long life. Just ask my relatives.
@SI1997m
8 жыл бұрын
I don't know what to say. I am in tears now knowing that other people suffer from this "incurable" disease. My twin sister has it. I hope they fund research to find a cure because things are getting worse with her condition.
@squirrelmaster9082
7 ай бұрын
The feeling of falling but sideways.... Weird isn't it. And every tip of body feels like it shoots electricity out. I have handles in my showers. One shower is walk in . Kinda nice. Boy oh boy lots and lots of pain.... All the time . My girlfriend is angelic.. I still don't know why she is still with me. She was even able to lead me back to following Jesus and going back to church again. I never thought it would happen again but he helps me so much especially when He was the only one left . Still here too. Thought he would have left long ago.
@thatonenaturesong
7 жыл бұрын
Hi Sam, I have CMT too, type 1a. I was diagnosed 11 years ago by a DNA test a week after I was diagnosed with Multiple Sclerosis. I absolutely love your attitude & I hugely respect you for making this video, well done. My 21 year old daughter has CMT too, both of us hardly ever talk to anyone about our health issues as we found people just don't seem interested in understanding.
@fumblztv8979
8 жыл бұрын
Love the stories. Great video.
@CRParsons
8 жыл бұрын
Thank you for making such an open and forthright video. I have CMT 1A. I appreciate your honesty and "owning it" attitude. I struggle with shame and embarrassment over having to wear AFO's and my steadily declining energy to do anything. I also enjoy making music but I don't play the piano much anymore. I go out fairly regularly to our local jams and sing periodically. Getting out and socializing with my "music friends'" is important for me as I tend to isolate quite a bit. Anyway, I just wanted to thank you and wish you all the best. Rock and "roll" on!
@GoodOlTimesOnlyGayer
6 жыл бұрын
Thanks Sam, you made me laugh. Yeah people are dicks - I remember being about 7 years old at the newsagents and being asked by the guy behind the counter why I had shaky hands. When I was getting splints to correct foot drop the guy who was fitting it who does heaps of CMT patients explained that because of the leg muscle issues, when we walk we are using up to 400% more energy and therefore tire easily than 'normal' people. That is why we get tired easily. Keep strong.
@SamBosworthMusic
6 жыл бұрын
Sean K so glad I made you laugh! That's really interesting about the 400% thing, I didn't know that! Thanks for the kind words bud, hope you have a great rest of your week :)
@thatonenaturesong
7 жыл бұрын
Sorry I posted that before I had finished writing lol, I just wanted to say music has been my saviour throughout, I've happily subbed to your channel. Take good care of you, Su x
@CarolinaHawkeye
8 жыл бұрын
I was diagnosed with CMT around puberty. They thought I was going through a clumsy stage. I've had two operations. One on each foot where they cut my heel bone in half and realigned it. I have hammer toes now from the surgery. I have no feeling on the bottom of my feet and super sensitive on the sides for this I don't wear flip flops. Thankfully after my surgeries 15+ years they gave the option to go without braces on my legs. It's been painful. I let myself slip into being overweight. I am now since last year fighting back. Hitting the gym Monday through Friday and doing whatever I can to not be held down by cmt. I'm on all social sites @Hawk8509 Great video! I may make one sometime about my experience with CMT as well.
@amysmith3871
4 жыл бұрын
You bring a smile to my face😊
@dylanizura6210
8 жыл бұрын
what doesn't kill you makes you stronger☺
@heidizoejenkins850
8 жыл бұрын
its good to see some on in uk doing a video on this
@mitch24941
8 жыл бұрын
I got diagnosed with cmt at around 11 but my grandmother noticed it when I started walking at 2. my father also has it but we must have a mild version. I had 2 surgerys to lengthen my Achilles tendon and one to lower my arch. I'm 22 now and living a pretty normal life feet give me shit time to time but nothing too bad.
@sssssfGify
8 жыл бұрын
I was diagnosed as a kid and had surgery on both legs, i don't even know if that helped anything. My problems are in my legs, knees are popping sometimes and balance proplems are there too. Standing for long times is hard and walking in sand or snow pretty impossible. My hands are thankfully fine, as in i don't think i have any problems there. At 30ish just trying to stay active and not let this shit get me down. To be honest, i don't give any thought to this shit, to me it's easier like that. Anyway, great video dude, nice positive vibe!
@nicolesprecher6351
5 жыл бұрын
Just got diagnosed with CMT at 33. My family has it and i was told i didnt have it. Well i knew.something was up and poof i have it. I thought i didnt have it and had 4 kids and woo they have it. I just subscribed because of your video
@sophiepark5395
7 жыл бұрын
im type 1a :) CMT strong 💪
@kphizzle9569
5 жыл бұрын
1a club right here
@samanthaleal6158
4 жыл бұрын
My 2 kids and i have cmt 1A
@swanzilla1982
Жыл бұрын
My left knee popped out Went to a specialist was first told I had the gout then after x-rays MRI was told almost into it for a year I needed I knee replacement Was home sitting in a recliner my leg turned I moved it back in place quickly then pop Im up walking again Anyway I see your video 7 years old I hope your still doing well
@bmoreruckus5574
6 жыл бұрын
Thank you so much for making this and talking about it. I also have severe cmt in feet and hands. I play guitar also 😉and I even ride a motorcycle with cmt. I’ve always tried to just keep going and live the best I could without being trapped into depression. I’ve experienced massive progression the last few years. I chose not to have years of surgery because of the likelihood of continued progression. They told me last month there are no surgical options at this point except amputation or wheelchair. Ive been pretty bummed 🙁 about that and I’m trying to figure out what to do but you are right, gotta keep going. Thank you
@shanewilcox1170
7 жыл бұрын
Thanks so much for sharing!!!
@piahammargren5254
7 жыл бұрын
I have cmt too! Great video!
@wendabonazza704
7 жыл бұрын
Pia Hammargren please check out my FB page and like and share your story m.facebook.com/Charcotmarietooth-Girl-Philadelphia-Pa-808340822677664/?ref=bookmarks
@atabish3031
7 жыл бұрын
Thank you Sam good video was for me
@MrBobWareham
7 жыл бұрын
Hi Sam thanks for the video very helpful with the link I am in Bournemouth Dorset and have had no help from NHS other than sending me to the falls clinic in Christchurch that did nothing to help and did not understand CMT I am very lucky as mine started when I was 60 I am now 71 and it started when I had a knee replacement but my main problem is balance anyway thanks again Bob
@bimmjim
8 жыл бұрын
Correction at 0:52 , it's one in 25 hundred. I have it and there are some videos on my page. There are also a lot of CMT pages on Facebook.
@SamBosworthMusic
8 жыл бұрын
Thankyou! Added the correction :)
@lukegarza8327
2 жыл бұрын
I have CMT also.
@tammyhjlpere6714
4 жыл бұрын
tramadol is something I can't take...wish I could..
@edde3802
7 жыл бұрын
great video...very real genuine video, can CMT individuals get disability (social security)
@squirrelmaster9082
3 жыл бұрын
Hey brother. I would like to talk to you about my story. People dont understand why it's hard for me to get out and do things. I try to go out but it's so difficult to get too far away from home because I needed to just get my fucking shoes off! CMT sucks and I thought I was walking in literally HELL!. It was one of those moments in my life where I couldn't explain it to anyone. No one understands..... I want to go out so bad. I have 20 different types of shoes and boots because I don't know what to put on my aching feet.
@TlivinglifewithCMT
5 жыл бұрын
thank you so much, I would love to connect you seem fabulous and us with CMT have to stick together I haven't had anyone to talk too. I love your room!!!
@katiemedeiros8314
7 жыл бұрын
Can't even stress the understanding of the problem with the hands
@TheOdinCrusade
6 жыл бұрын
Found out today my uncle has CMT so im here to learn more about it.
@lukaslatner5348
7 жыл бұрын
As weird as this sound a chiropractor changed my life *I was diagnosed with cmt a year and a half ago* my parents noticed I was walking funny and took me to doctors all the test and find out I have cmt and I always tripped up leg pain and numbness and an Applied kinesiology chiropractor in 2 visits have me walking not only straight but I have no more pain I want more people to know about this to help them because I really dislike how Doctors are basically like yeah you’re fucked for life here’s some braces.
@allisonbryant4802
5 жыл бұрын
i was diagnosed today. i’m quite young and i have a very slow progressing type of cmt. my cmt affects my legs more than my arms of hands. i’ve struggled with dislocations, high arches, and some of the other common symptoms related to cmt in the legs and feet. i get my official diagnosis about the specific genes and stuff in two month or so. i’ve had a lot of leg pain and i mean basically everything that’s been happening was caused by cmt. so yea, that’s my story
@katiemedeiros8314
7 жыл бұрын
I was diagnosed at the age of 1 it hadn't taken affect until grade five when I was 10 i am now 17 and been dealing with it for 7 years it hurts like a bitch trust me but what hurts more is not knowing anyone with the same problem seeing this makes me feel not alone .... well I knew other people had it but never have I met or known anyone with it
@SamBosworthMusic
7 жыл бұрын
Kaitlyn Medeiros glad this helped :D
@shirleyreyes1756
5 жыл бұрын
I have CMT and its lost everything. So its not fun for me. I'm happy your OK bit I'm at a loss
@roachman8744
8 жыл бұрын
Aleve in the morning works nice
@lillyblankenship2435
6 жыл бұрын
I have CMT to and i still do not know how to walk. I am in a wheelchair almost 24 hours all day every day
@sharleemonaco-harr9789
8 жыл бұрын
I have CMT and 2 years ago I got sepis and 6 weeks later mersa. I had to have below the knee amputation on my right leg. I understand who you feel. I am on my second prothesis. I had it done Nov 17, 2014.
@14Raine14
5 жыл бұрын
CMT Warriors unite! I was officially diagnosed with CMT1A a few years ago with a generic test, but I've known I've had it for as long as I can remember. I'm also a lemon, my cmt is worse than my mother, who passed it to me. Pro tip, if you can I highly recommend getting a Service Dog! My.girl is a huge help, she picks things up when I drop them, she can take my socks off, open automatic doors , she can even get into my fridge!
@davidjones1393
8 жыл бұрын
THKS
@elizebotha3344
8 жыл бұрын
Love it I have CTM I AM 25 LOVE TO CHAT whit you dont have friends
@stevenhills1058
5 жыл бұрын
Hi there I have CMT too I'll chat with you where bouts are you I live in Watford England
@Quest4Tube
5 жыл бұрын
You’re a cool dude
@cfhew7104
6 жыл бұрын
i have cmt too...pretty tough life...
@rsamom
7 ай бұрын
I think my son has CMT type 2, busy getting tests now.😢
@vivivampp8451
6 жыл бұрын
i also have this i go to the hospital a lot its hard
@Viper-hq4ln
7 жыл бұрын
sometimes you feel like to give but i had since i was a kid to me the pain i cant feel my legs i also can't walk i stop walking last year i have pain on my back sometime it hard to get out of bed
@Bonesph
8 жыл бұрын
Tramadol and Napoxone are both American names Tramadol has a brand name called Ultram and Napoxone is Alive
@bimmjim
8 жыл бұрын
Great attitude. or . . *TuDE DudE!* Ya. . I'm sorry to see it has hit you so hard. . I was playing Tennis at 24. Now, at 67, I'm in bed most of the time. It IS a very painful disease.
@maryrichmond5080
6 жыл бұрын
I was diagnosed with CMT when is was four, it sucked I had to wear leg braces to bed for years there supper uncomfortable
@Lifeat51
7 жыл бұрын
Nice Intro Chat about CMT...pretty much all good and something we can all understand if like you/me have CMT... I have CMT1A had major foot surgery last year...just about walking/pain in immense pain but staying out of the wheelchair for now but feel I am on borrowed time and trying to do as much as I can on 2 feet right now..... My Liver cannot cope with pain meds for me...all the weaker pills are non effective, strong stuff makes me a zombie, alcohol helps but that is not ideal and is also not healthy....I have bee trying to cope with the pain to keep my driving licence and job but its tough! Hope to view your other vids when I get time....
@kasperghost1971
4 жыл бұрын
I have cmt too I’m 13 will it get worse
@MegaFrank69
8 жыл бұрын
my sis has cmt and I may have it too, I'm gonna start hitting the gym try to get strong and use vitamins and supplements, we gotta fight back somehow, ima try and convince my sis to get in shape also
@rexhayes1719
3 жыл бұрын
Can cmt hit you after a stroke,I already have neuropathy in the legs before the stroke but it's worse after
@heidizoejenkins850
8 жыл бұрын
my partner is 21 and have this condition
@loveoflyricism2769
3 жыл бұрын
Cmt strong ❤️
@luisluna7974
3 жыл бұрын
My boyfriend has always had these spontaneous tremblings. I just learned his dad has CMT, and didn't develop symptoms until his 40s. Do you think my bf is gonna have it?
@IronsightErik
3 жыл бұрын
He could have it, it’s a 50/50 probability to pass it down because it’s genetic. My gf has it, it’s a scary disease.
@Hyangy
6 жыл бұрын
I am 15 and I have cmt, it really hits me and hate it, I feel like how I would live as time goes.. I feel worry as time goes.. how do u bare it? I really respect u
@SamBosworthMusic
6 жыл бұрын
Hey :) I know it's hard but you have to try not to waste time worrying about it. Time worrying is time wasted. Things are much harder for us with CMT but you have to live your life and do what you enjoy! I hope you feel more positive about things soon! :)
@kayplantin2625
4 жыл бұрын
Please look into doing a keto diet for this problem.. It will reduce the need for medication.
@SamBosworthMusic
4 жыл бұрын
No. It won't.
@kayplantin2625
4 жыл бұрын
Have you tried it before and researched it?
@SamBosworthMusic
4 жыл бұрын
@@kayplantin2625 yeah that's how I know it's a load of shit. At least for pain.
@rsamom
7 ай бұрын
Hi how are you now?
@rabbithole797
5 жыл бұрын
I alo have CMT. I am 53. Kniow I had somthing whe I was a kid and yes it did exacerbate a bit in my 20's. But it was not till I was mid 40's when it 'took me down" with seizures and breathing issues that wrre pretty serious. My hands are now pretty unstrady, though mostly this has been a lower leg thing for me, until now that age has set in. But I am30yrs a health care alternative and have been sleuthing since my 40's about myself and this specfically. There are some diet things I have found great help if you are interested. A mushroom called Lions tail seems to build nerves, and it's been feeling REALLY really good, and I think is working. Another mucshroom seems to create a very soothing affect, it's called "white mushroom" and looks like a sponge. It needs to be cooked for a few hours to make it very very soft so it will digest. Also removing EVERY grain, period makes a WORLD of difference, and replace with beans, and white beans especially. Soy beans (cooked and soy milk, either must be GMO free of course) work very well. If you'd like further correspondance, i'm open to that. Cheers and best.
@nufcmitch1
7 жыл бұрын
Me and my fam have this disease
@justincrumpton7802
7 жыл бұрын
I have CMT1A, diagnosed when I was 13, I'm 32 now. I've had ankle fusion surgery. I know what you are going through.
@MsLizzypoo79
6 жыл бұрын
Justin Crumpton me too!
@MsLizzypoo79
6 жыл бұрын
6 surgeries in 12 screws in each foot. Sadly my daughter was diagnosed at the age 7 having her first surgery at the age 10. Shes a tough cookie like her mama... shes get through it. stay positive my friends. try my topicals it actually works! www.veronawellness.org order some samples try it. i use it daily to keep up with the rest of the world. be well Liz
@acaciakapusta8921
5 жыл бұрын
1 in 2,500, not 25,000 😝
@SamBosworthMusic
5 жыл бұрын
I did have an annotation on top correcting that but then youtube took annotations off! Thanks for letting folks know tho, I'll pin your comment! :D
@acaciakapusta8921
5 жыл бұрын
@@SamBosworthMusic Sweet! My partner picked on me a bit for correcting you, but I find it so important that folks know how common CMT is. We're literally everywhere!
@rudyzturbota
6 жыл бұрын
Have you tried mushrooms of any kind? Or cannabis? What's your diet? I have cmt as well . I'm really conscience on my diet. Very careful of what I intake. And I have had positive effects from it. I rarely have pain anymore from my neuropathy in my feet.
@WeRFunkyPeople
7 жыл бұрын
do you have tremors too, my legs are also like claws and I recently gave blood for dna test. moreover I have serious termors in my hand and feet
@andrewjackson5869
7 жыл бұрын
I had CMT since i was 23 years old and now i am 48 years old. I would like to know the real meaning 0f CMT. What was that word u used at the beginning of your video started with a Prof something. U said it was the original name of the disease.
@shellycolson9365
Жыл бұрын
Does anyone get disability for this . My boyfriend is 38 trying to get disability in America. There is a new pill in trial for this right now
@73295
7 жыл бұрын
Good stuff chap. I have type 1diagnosed in 1990 im 46 now. In the last 5 years i have noticed it more,i cant move my toes ,only the big one ,i have fallen off of ladders,and lost front teeth, am tired cant ride my motorbike because my leg gives away etc etc. Is hair loss on lower legs common?my shins look like they have been machin-gunned but no pain. I know its sounds weird, but since 1998 ive only been to hospital once ,maybe its time to register at a doctors. Ive always put this off as i worry how this affects my mortgage ,iife insurance etc cheers
@lukaslatner5348
7 жыл бұрын
This might seem a little whacko but go see an applied kinesiology chiropractor near you if you have one littlerallu changed my life
@mrsfarrellforever
8 жыл бұрын
Any chance on anymore videos I've just found out I've had it and I don't know what to do I can't leave my house my dreams have just vanished jnfrint of my eyes and I don't know what to do I just feel so small
@SamBosworthMusic
8 жыл бұрын
Heyy :) I am looking at making a series on this, do you have any ideas/requests on things I could talk about?
@mrsfarrellforever
8 жыл бұрын
Sam Bosworth I would be interested to know how long it took for you to be diagnosed as I've been struggling with this for 21 years and no one had a clue till I went to be referred as my estranged grandfather got in contact and I found out he had it. I think I've been treated horribly. I would also like to know how did you come to terms with it, my mental health isn't the best and it's really set me back any tips on how you came to terms with it and how you face it in your day to day life. I find myself getting angry when I can't do things I.E. opening things I've never been able to but now I know why I just kind of feel stupid. I'm sure there's so much more I would love to know but I can't think at the moment. When I think of something I will make a list and let you know. Also is there anything I can do to talk to people going through the same thing and who will understand? I appreciate your reply. I just find every other video out there Is so depressing and yours has really helped me.
@SamBosworthMusic
8 жыл бұрын
Hey, thank YOU so much for your comment and suggestions. I'll work on getting a new video out there within a week. As for talking to be people going through similar things. Tumblr is surprisingly useful in finding others going what we're going through. If you search charcot marie tooth on there you'll find quite a few blogs who talk about their life with CMT. Hope you have a great rest of your day :)
@SamBosworthMusic
7 жыл бұрын
Heyy sorry this is so late but thought I'd let you know I have a video about my diagnosis up now :)
@bradleyrayson3432
7 жыл бұрын
cydniebenbow X Thank you for sharing. I suffer with CMT and I am a guitar player and skateboarder. I can't skate anymore but thank God I can play guitar, sometimes it's tough. I lose my dreams in my depression but we can't quit. We can only beat this together.
@cologne9243
5 жыл бұрын
Greetings from Germany... I have cmt 1a
@SamBosworthMusic
5 жыл бұрын
Hey Stephanie, me too! Hope you're well!
@AndresLopez-gb3wb
6 жыл бұрын
Did you take a DNA test to clarify if you had cmt? If you did that's bad they're poisoning people who take the DNA test for cmt?
@SamBosworthMusic
6 жыл бұрын
Andres Lopez I'm not sure what you mean about that? I didn't do a dna test, I did other tests tho and wasn't poisoned?
@NONO-mf1nc
7 жыл бұрын
did you have to wear braces. I'm 17 and was diagnosed last year and they made me braces right away. will this help alto
@nocturne619
7 жыл бұрын
The braces help a great deal with the foot/ankle weakness. It will progress as you get older, causing more and more difficulty with walking and balance. I used to wear them when i was younger (and need to look into getting them again...), but yes, the braces do help, so stick with em!
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