CMT Central

Firstly, apologies if this is very incoherent/ sounds like an angst teen. I was annoyed while writing it and have a lot of things I've needed to say but CMT is somehow a taboo topic with my family.

I'm an 18 year old student in Australia, who was diagnosed with CMT at 2 or 3.
Most of my problems are with motor skills in my hands. I saw foot drop and the many deformities in the legs of my father, so consciously avoided a high gait and through wearing a light healed shoe, the foot drop isn't noticeable. Talking about CMT is I guess, for want of a better word, a taboo in my family so this hiding was good. I only learnt a name for my problem when I read it in my school file at 8 and how it affected me when my year 2 teacher made a spectacle out of me over it (asking the whole class to do certain activities like roll from fetal position on back up to sitting, and pointing out how girls are better than boys at it, then I'm worse than all of them).
I have a lot of problems with the hands. While I'm fine with most every day task, holding a pen escapes me. I started playing clarinet and later saxophone at 8 to help with this and music has become my life. It's been one of many accelerates of my depression too. I'm losing the one thing I live for and can't do a thing to change it.
Back to holding a pen, as a student, this is very problematic. The school try to help, but because I am intelligent and don't look different, nothing happens. The best I've got is 5 minute breaks every half hour in exams for fatigue (1 line and I get pain up my lower arm). I have to do 14 essays in my upcoming exams so causing a lot of stress.
My father and sister had/have CMT as well. My father killed himself when I was 13 and from the fights I over heard when younger, CMT was a major contributor to this. While I don't care so much about him being gone, this has left me with a wonderfully optimistic view of where CMT will leave me in 10-20 years time, and I'm a self harming, depressive, anxious, drug addict teen with an eating disorder and a psychiatrist who every session tells me I don't look like I have CMT, should just get over it. As any idiot here should know,this has made it all 10 times worse and I have a few suicide attempts to my name, but always had someone find me.
I don't see any medical professional about CMT and don't treat it in any way, so don't know much of the technical effects, but that is how it has effected me from my point of view. Congrats if you managed to read that, needed to get it out and not be labeled a freak for many years.

To you redhead. You will get support here from folks who can empathise.
If you read through topics here you will see most of us have the same symptoms as you and although it a slow progressive disease its not life threatening.

I personally, as a child always fell over had an unusual walk and some reflexes absent. I was never diagnosed will 7 years ago at the age of 53 it was a bit of a shock.

My hands and fingers are weak and so is my pincer grip.

I have had to learn to adapt, so will you in time. Be strong and positive. Be your own woman. You have a future ahead of you.

Hi redhead.

I'm so sorry to read your story.

I hope that in finding others like you here you can start on a road to accepting your CMT. It is NOT easy and I will be the first to admit to that fact and I HAVE been exactly where you are now, with self-harming and a suicide attempt. The self-harming urges do re-appear frequently but so far I have been able to force those thoughts from my head and have not cut myself for well over 5 months now and for nearly a year before the momentary lapse 5 months ago.

You CAN fight your way through this.

School can be a very cruel experience for any CMTer. My school did not know about my CMT so I was pushed just as much as anyone else... came last in every sport (except swimming) and got shouted at for doing so. I struggled holding pens / pencils too but had no extra help with this, therefore I couldn't keep up with writing notes in lessons and with writing in exams.

I know a couple of younger members have access to a laptop at school / college as typing is easier than writing. Could this option be discussed with your teachers?

Music is/was my passion also but due to CMT, can no longer play the piano, my one big passion. It has also put paid to my singing to so I know how you feel. There is nothing that can be done about this. Can you start thinking about relearning an instrument that you could use long term? I have considered this but am stuck as to WHAT instrument. I'd love to learn the cello, always have wanted to but think that the fine finger work would make it not an option for me.

What happens when you try to talk CMT with your family? Am I right in saying your CMT came from your father? If this is the case, maybe your Mom doesn't feel she is sufficiently "qualified" to talk about CMT, and maybe she isn't.

I have noone else in my family at all with CMT and to my knowledge have never met another "CMTer" before, having fellow CMTers here to talk about is a MAJOR lifeline to me, I hope it can be for you too.

My website (web address in my signature) details the symptoms of the condition, but as it affects everyone differently, it is impossible to guess how it will affect each individual.

Thankyou for sharing your story , it is moving & I do feel for you. I hope you will get help and support from this site, age doesn't really matter but a shared disability does.


Some men can be hard work when it comes to health, they just don't want to talk about it. My husband Bill,. doesn't want to discuss his condition, not does he like to hear how Warren is. He copes by being in constant denial and I find that hard. As soon as we found out the condition was heriditary (quite recently), we told our children as they had a right to know & that is as far as it went. Fortuately, Warren my son is open and honest about his condition & often asks me to go with him to hospital appts to keep me informed (this breaks my heart) but i am glad to be included. He is already taking steps to minimise the pressure palsies & prevent them from becoming permanent like his dad & they intent to tell Callum & get him tested when he is old enought to understand - he is 4

Hi Redhead,
I read your story after I'd already posted in response to your excellent comments in the genetics section; but I still hold to the idea of counselling and not psychiatry for some of your issues, perhaps as a complimentary addition to the psychiatrist. (I am a Behaviourist and counsellor myself and help people with any behavioural issue, bulimia, self-harming, suicidal tendancies, social skills issues and many others. Psychiatry is for me a chemical response to a human issue.... Behavioural approaches offer something a bit more human in delivery; it may be worth a try.)
You've certainly been through the mill what with your Dad and now losing your musical passion is a terrible thing.... I think we all made a wince when you describe how it makes you feel....I do to for the things I have lost.

I did find reading Sam's brilliant web page VERY helpful and quite a release, she does say it exactly how I feel about my condition and I laughed and cried too because finally someone was saying what I was thinking! Perhaps it will give you a lift too?

I am doing a research degree at Uni and I have a laptop with a speech programme on it so I don't have to write. But recently I organised for one of my young people whom I support to have a writer for his exams and 33% extra time (for the time it takes to dictate) and breaks whenever needed and for the writer to also be a prompt (this young man has ADHD so has concentration issues too!) These were organised with AQA and Edexel who are the national examiners for the whole of the UK education system. So if you need help with exams, it is your right as a person to have a 'level playing field with everyone else'.

I'm happy to try and help if I can...I have contacts in Australia who may be of some use, or maybe there's a CMT group there already who can help better? Just shout me if you think you might need extra and I'll see what I can do to give you a boost.

You know...the lovely people here on this site have shown me that I can be brave, but I don't have to be all of the time..... So do feel free to have your rant...we're right there with you sister!

Welcome to the forum Redhead,
my heart goes out to you. you sound like you've had a really tough time. hopefully this site, and the folks on here will be able to help you, we are a friendly bunch.

i don't have CMT myself, but my partner, his mum, and we are awaiting results of blood tests for our little girls (but i'll reply on your other post as well)
simon can trace the CMT in his family back to his grandad, with only one child in each generation having it, (his mum is one of 7 i think, and he is one of 3). i think with the arrival of our girls, simons diagnosis at 28, and simons CMT getting worse in the past few years, it's now wide in the open in the family.

keep posting and let us all know how you're doing.

Welcome, Redhead! You will most surely find this group to be a family of friends who WILL talk about CMT and all of its ugly sides. Your precious story makes me cry, again. Your pain & suffering have led you to this group, these fellow road warriors who are trying to walk the same path as yours. Start now to fill yourself with Peace of mind that you are going in the right direction. Read as many of the group's postings from the present & the past, just fill yourself with their stories of similar situations & emotions. Keep searching the Internet, your country has CMT groups & help for you. Found this Aussie site of CMTAA.....

http://www.cmt.org.au/index.php/site/about/

Rule #8....Never apologize. You have found the right place to rant.

Hi redhead! I hope you feel better after the rant. That's what this place is for and for once, MANY people understand EXACTLY what you're on about! That should give you a little comfort. I, too, know what it's like to have your musical interests taken from you. 12 years of guitar and bass playing in bands, down the drain. Think of it this way, as much as it sucks, that our lives are just a bit more challenging than most. We have to work harder to do things that "normals" take for granted. Hell, maybe this is part of the next stage of human evolution, being that we have to think harder to find different ways to do things. Who knows. Always remember, we're here for you!

BTW, are you an actual redhead or is that just a slick nickname. I am a redhead, as in orange hair.

Actual ranga, how I got the nickname at a camp.

What does the "nfi" mean against your CMT Type Ashlea?

Cool, never heard that reference. I've either been called "carrot top" (which I never understood, because carrot tops are green!) and sunshine. I STILL get called sunshine....

nfi stands for no fucking idea sam.

haha, I should know that

That jives. Us red-haired folk are quite feisty.