Re: The personality effect on growing up with CMT

[Guest guest]

Hi Rob,

I grew up with CMT too. But I was diagnosed as a kid (no 'types' then, just CMT

'plain'), so by the time I was 17 I had a pretty full life - school, work,

social life, travel. Nothing ever stopped me from doing what I wanted - even if

the 'party scene' got a bit out of control.

You are fortunate to be living at this time because there is so much research

being done all over the world, and also on your specific type. While there's no

current " treatment " , Dr. Shy and his team believe in 3-5 years there will be.

In the meantime, I hope you will take very good care of yourself, exercise to

the best you can without overkill (swimming is the best) Also eat a

nutritionally balance diet - I know junk food is quicker and cheaper, but our

bodies need special care - at any age. When you feel tired, rest or sleep.

Keep up with that 'deep thinking'. Keep a journal, write those thoughts, with

every negative thought, force yourself to change that into a positive thought.

If you do this everyday for 30 days for even 1/2 hour, you'll be surprised at

the positive results. Remember negative thoughts cause stress. Stress is a foe

to CMT, so do not stress. And find 5 things to be 100% grateful for everyday.

That's my experience from 46 years living with CMT. Oh, and as for personality,

my friends tell me I am a character, very personable, animated, and happy

Gretchen

[Guest guest]

Interesting topic here Rob.

So how does it feel knowing that you have had CMT and not a personality

disorder?

[Guest guest]

Gretchen,

Nicely put. I found out late in life (45) that I had CMT, but didn't learn that

it had been the culprit for my " clumsiness " , etc., until the past couple of

years. I too led a very active life...the gym, travel, hiking, camping,

challenging water sports, etc., but realized I had to work harder at it than

most of my peers. Now.......I know why.

Great advice you gave Rob. He's blessed to be so young and living now while all

of the R & D is taking place. Hopefully a cure/therapies will be found in the

near future, and he will be able to benefit handsomely.

Mark

[Guest guest]

Hi Rob,

 

I grew up with CMT too. In my case it was very visible early, so I could blame

all my clumsiness on CMT. For me this was good, because instead of feeling

clumsy, lazy and all that you mentioned, I felt I was doing well for someone

with this disease. Hope you can feel like that too, now that you know that it is

CMT!

 

Beata

Hi everyone,

I was just wanted to tell people something after I was doing some deep thinking.

So I grew up with CMT 1A and didn't have it diagnosed until I was 17. Before it

was diagnosed, I had no idea I had any condition or health problem at all.

Now I'm 19. I've just realized that in my childhood and adolescence, my mindset

was " I guess I'm just a clumsy kid, " or " I must be a lazy person, unathletic, "

or " I'm just always putting in no effort. " Let's just say it's pretty

mind-blowing when you realize that none of those are necessarily true. Instead

of just becoming my own person I've felt I became something that fit these

personality traits that I've fallen into. It feels like I was born into it.

-Rob

[Guest guest]

Thanks to everyone for the responses, it seems like consistent physical activity

and a healthy mindset will help me out.

And , knowing I had CMT and not a personality disorder is kind of like a

double-edged sword. On one side, it's like I lost some years in my adolescence,

and I think I would have enjoyed them a lot more if I knew I had CMT. On the

other side, CMT explains of lot of problems I had when I was younger: my

clumsiness, my unathleticness, my self-worth. And this diagnosis gives reason

behind these problems.

It's not easy overcome a way of thinking I've had for so long, but I'm trying I

guess.

>

> Interesting topic here Rob.

>

> So how does it feel knowing that you have had CMT and not a personality

> disorder?

>

>

>

>

>

>

>

>