Teenage CMT

[Guest guest]

In a message dated 6/22/2001 9:43:56 AM Pacific Daylight Time,

liliwigg@... writes:

> Since hearing about 's dilemma, and also hearing about Alisha's

> life, and remembering mine as a CMT teen, I am wondering the following:

>

> 1) Any of you with either childhood CMT or early teen CMT had a

> particularly rough time during your teen years with CMT symptoms?

Answer: Teenage years sucked and I was tired from walking all over school.

>

> 2) How were/are your symptoms treated? Are they being acknowledged? Or

> do you think you are suffering or suffered unduly?

> Answer: Surgery talk by a few of my doctors. My Dad died and then surgery

> was put on hold. That was fine by me I couldn't stand to be trapped with my

> Mother during my recovery time.

> 3) Do you think that your teenage CMT symptoms are worse due to the fact

> that teen bodies are changing inside big time? I am supposing this is

> true for females, but if there are any CMT teenage males out there with

> CMT, I would like to know your thoughts.

> Answer: I think what bothered me most was not having any CMT friends to

> talk to. My friends were wearing heels and mini skirts. Pumps and jeans

> were also in style. Depression hit me.

>

>

>

>

>

[Guest guest]

alisha here,

what a great topic. before i get going, i finished school on friday the 22nd

at 9:30am. i now have my summer vacation!!! i am enjoying it. i picked

strawberries again today. i cleaned them up and nibbed them too. my legs r

killing me. last night i was at a concert and it was good to see.

1) Any of you with either childhood CMT or early teen CMT had a

particularly rough time during your teen years with CMT symptoms?

i am and have had a tough time with my CMT. i was diagnosed when i was 13

(the beginning of my teenage years) when i got to high school, i didn't know

anyone, i did this on purpose. i can make friends easily and besides i hated

to think that someone from public school would follow me and give me

trouble. getting through phsyical education or known as gym or my personally

favourite " hell " . i got through with an 82% because of my written tests! i

didn't do anything really. it was a waste of time. i was in music and i

started having problems when in 1998. in grade 10, it got harder to play the

clarinet and my problems with playing and typing got worse. screaming

matches, temper tantrums, fights, balling occured at school and at home. i

kept hearing my neuro telling me that i wasn't going to have any problems

with my CMT and i got madder everytime i heard that. she was wrong and it

took her 4 years to admit it to me. i am still having problems with this

all, its like walking in a maze and there is no way out only alternatives

and they don't look appealing at all.

2) How were/are your symptoms treated? Are they being acknowledged? Or

do you think you are suffering or suffered unduly?

my symptoms r mixed to everyone. to some people they r acknowledged and to

others, they r not. i am suffering and shouldn't be at all. i am trying to

advocate for myself but since i am a teenager everyone is a little hard of

hearing when it comes to me so i have to yell louder. i will cause a scene

to be noticed and to be heard.

3) Do you think that your teenage CMT symptoms are worse due to the fact

that teen bodies are changing inside big time? I am supposing this is true

for females, but if there are any CMT teenage males out there with CMT, I

would like to know your thoughts.

um, i don't think so at all but it could be possible.

4) Any adults out there like myself with CMT who have experienced great

diversity of symptoms over the years and now in adulthood, things have

seemed to 'even out' in the way of 'symptom takeover'.

since i am not an adult i can't answer this one but i will be shortly when i

turn 18 on september 16th.

as well i am entering a study that i taking place at mcmaster university

here in ontario, canada. i think its like the one that was talked about

earlier but i am not sure because i am waiting for the info to come in the

mail.

chow!

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[Guest guest]

Hi Alisha,

Owen here,

Re: CMT symptoms during teenage years.

I'm now 59 and have CMT 1 but I do remember my teenage years very

clearly. A little background the high school I went to in Chicago was

the roughest academically and socially tough. In the first year I had

went home with hole in one of my cheeks from a ring on someone's fist, a

cut on my forehead from a hammer, and finally four fingers crushed. I

learned to duck, and be aware of what was going on around me very

quickly. Thank God! that was the last of my injuries in high school.

As far as the CMT there was a lot of ridicule about the way I walked.

Fortunately, I soon befriended people that were big and mean so as a

result most of the ridicule ended. From the time I was 12 through 19 I

had a lot of pain in my hips, legs, and ankles. I remember eating

aspirin and laying on a heating pad. I personally do not think the CMT

was worse during my teens because body changes going on. When I was 16

my parents took me to a neurologist. As I remember he was of little or

no help. He did an exploratory surgery on my right foot and determined

the nerves in my foot were huge. ( There was no further explanation. )

After that surgery my walking was even worse. Thankfully today the

doctors are much better.

Alisha, over the years I had CMT it seems like there is some kind of

cycle X number of good years and then X number of bad years. At this

time we have nothing to fight CMT the disease with, but we can fight how

we accept what is happening to our bodies. The biggest fight is with our

emotions. Hang in there!

Your posts are always thought provoking.

Happy Trails

Owen

Alisha Peckham wrote:

> alisha here,

>

> what a great topic. before i get going, i finished school on friday

> the 22nd

> at 9:30am. i now have my summer vacation!!! i am enjoying it. i picked

>

> strawberries again today. i cleaned them up and nibbed them too. my

> legs r

> killing me. last night i was at a concert and it was good to see.

>

> 1) Any of you with either childhood CMT or early teen CMT had a

> particularly rough time during your teen years with CMT symptoms?

>

> i am and have had a tough time with my CMT. i was diagnosed when i was

> 13

> (the beginning of my teenage years) when i got to high school, i

> didn't know

> anyone, i did this on purpose. i can make friends easily and besides i

> hated

> to think that someone from public school would follow me and give me

> trouble. getting through phsyical education or known as gym or my

> personally

> favourite " hell " . i got through with an 82% because of my written

> tests! i

> didn't do anything really. it was a waste of time. i was in music and

> i

> started having problems when in 1998. in grade 10, it got harder to

> play the

> clarinet and my problems with playing and typing got worse. screaming

> matches, temper tantrums, fights, balling occured at school and at

> home. i

> kept hearing my neuro telling me that i wasn't going to have any

> problems

> with my CMT and i got madder everytime i heard that. she was wrong and

> it

> took her 4 years to admit it to me. i am still having problems with

> this

> all, its like walking in a maze and there is no way out only

> alternatives

> and they don't look appealing at all.

>

> 2) How were/are your symptoms treated? Are they being acknowledged? Or

>

> do you think you are suffering or suffered unduly?

>

> my symptoms r mixed to everyone. to some people they r acknowledged

> and to

> others, they r not. i am suffering and shouldn't be at all. i am

> trying to

> advocate for myself but since i am a teenager everyone is a little

> hard of

> hearing when it comes to me so i have to yell louder. i will cause a

> scene

> to be noticed and to be heard.

>

> 3) Do you think that your teenage CMT symptoms are worse due to the

> fact

> that teen bodies are changing inside big time? I am supposing this is

> true

> for females, but if there are any CMT teenage males out there with

> CMT, I

> would like to know your thoughts.

>

> um, i don't think so at all but it could be possible.

>

> 4) Any adults out there like myself with CMT who have experienced

> great

> diversity of symptoms over the years and now in adulthood, things have

>

> seemed to 'even out' in the way of 'symptom takeover'.

>

> since i am not an adult i can't answer this one but i will be shortly

> when i

> turn 18 on september 16th.

>

> as well i am entering a study that i taking place at mcmaster

> university

> here in ontario, canada. i think its like the one that was talked

> about

> earlier but i am not sure because i am waiting for the info to come in

> the

> mail.

>

> chow!

>

> ________________________________________________________________________

>

> Get Your Private, Free E-mail from MSN Hotmail at

> http://www.hotmail.com.

>

>

>

[Guest guest]

I am a 21 year old male with CMT high school really sucked for me I

hated gym and got teased all the time for small feet and trouble in

gym and walking. I hated high school and often missed days cause I

couldn't deal with the rude people and teachers. I can safely say high

school wasn't the greatest years of my life but the exact opposite.

Thank god I was able to go to a vocational school for the last few

years of hell school it wasn't cake there either my legs and feet hurt

all the time from all the walking but there was no gym there. I was

diagnosed right about the time I started voc school I went to a foot

doc cause I had hurt my foot he looked at my feet once and said you

have CMT I went to a neuro and was diagnosed for sure I was glad to

finally know what was wrong with me and I wasn't just lazy like all my

gym teachers had said. All my school was hell I remeber having trouble

in kindergarden and being singled out in gym for being " lazy " . I am so

glad to be out of school and not having to deal with stupid rude

people most of the time. There are so many people out there that are

rude and mean but that is life. My symptons seem to be going the same

but less stress helps alot. Good luck to all.

> alisha here,

>

> what a great topic. before i get going, i finished school on friday

the 22nd

> at 9:30am. i now have my summer vacation!!! i am enjoying it. i

picked

> strawberries again today. i cleaned them up and nibbed them too. my

legs r

> killing me. last night i was at a concert and it was good to see.

>

> 1) Any of you with either childhood CMT or early teen CMT had a

> particularly rough time during your teen years with CMT symptoms?

>

> i am and have had a tough time with my CMT. i was diagnosed when i

was 13

> (the beginning of my teenage years) when i got to high school, i

didn't know

> anyone, i did this on purpose. i can make friends easily and besides

i hated

> to think that someone from public school would follow me and give me

> trouble. getting through phsyical education or known as gym or my

personally

> favourite " hell " . i got through with an 82% because of my written

tests! i

> didn't do anything really. it was a waste of time. i was in music

and i

> started having problems when in 1998. in grade 10, it got harder to

play the

> clarinet and my problems with playing and typing got worse.

screaming

> matches, temper tantrums, fights, balling occured at school and at

home. i

> kept hearing my neuro telling me that i wasn't going to have any

problems

> with my CMT and i got madder everytime i heard that. she was wrong

and it

> took her 4 years to admit it to me. i am still having problems with

this

> all, its like walking in a maze and there is no way out only

alternatives

> and they don't look appealing at all.

>

> 2) How were/are your symptoms treated? Are they being acknowledged?

Or

> do you think you are suffering or suffered unduly?

>

> my symptoms r mixed to everyone. to some people they r acknowledged

and to

> others, they r not. i am suffering and shouldn't be at all. i am

trying to

> advocate for myself but since i am a teenager everyone is a little

hard of

> hearing when it comes to me so i have to yell louder. i will cause a

scene

> to be noticed and to be heard.

>

> 3) Do you think that your teenage CMT symptoms are worse due to the

fact

> that teen bodies are changing inside big time? I am supposing this

is true

> for females, but if there are any CMT teenage males out there with

CMT, I

> would like to know your thoughts.

>

> um, i don't think so at all but it could be possible.

>

> 4) Any adults out there like myself with CMT who have experienced

great

> diversity of symptoms over the years and now in adulthood, things

have

> seemed to 'even out' in the way of 'symptom takeover'.

>

> since i am not an adult i can't answer this one but i will be

shortly when i

> turn 18 on september 16th.

>

> as well i am entering a study that i taking place at mcmaster

university

> here in ontario, canada. i think its like the one that was talked

about

> earlier but i am not sure because i am waiting for the info to come

in the

> mail.

>

> chow!

>

______________________________________________________________________

___

> Get Your Private, Free E-mail from MSN Hotmail at

http://www.hotmail.com.

[Guest guest]

Marta,

I am so glad to hear that your physical training is going well. While this

approach does not work for all CMTers it appears to be just what you need.

It worked for me. Don't overdue it and if your body tells you to take a day

off, do so. I experienced the same thing with the pain when I was your age.

As I built up my muscles my pain decreased significantly.

Regards,

BC

----- Original Message -----

From: <martalynn@...>

< >

Sent: Monday, June 25, 2001 8:42 PM

Subject: [] Teenage CMT

> Gretchen and all:

>

> I have not posted for quite sometime, I have been very busy lately

> but it was nice to come back and catch up.

>

> Teenagers with CMT...well to me it just seems like another reason

> to be depressed and have a low self esteem. As was pointed out

> ealrier, girls wearing strapy little shoes and skirts, and for both

> genders there is always the problem physically. Fortunately, as soon

> as I realized why running was so painful, my doctor gave me a note

> saying I do not have to participate in PE which for me was a godsend.

> PE was and has been the worst class for me, it just gave me all this

> raw comparison of what it's like to be healthy and physically fit,

> and then how it is like to feel weak and clumsy.

>

> However, I'm not sure if many teenagers especially are entirely

> aware that they don't necessarily have to be this way. Yes, you will

> always be somewhat weaker, and you do have to be conscious of your

> limitations, but recently as I've worked at it I have gotten

> sufficiently better. The pain is not gone, and I doubt it ever will

> be, but it is significantly less. I've been working on developing

> muscles in my legs and arms, and now I am able to run. I am not the

> fastest, certainly not the most graceful, but each day I am able to

> run faster and longer. It was daunting at first, to think that I

> could improve the situation for myself, but it is possible. I don't

> think teenagers shine light on their situations often enough, or

> certainly I always get too caught up in magnifying the bad that it

> was rare I would notice any good. As I get older more and more things

> are coming together, I'm really enjoying all of these realizations.

>

> - Marta

>

>

>

[Guest guest]

Hi Marta,

Great to hear from you! I am so happy for you to know you are OUT of PE!

I must say THAT one difference made my teen years much better!

Improving situations for ourselves takes GUTS, and you sure have 'em!!!!

You go girl! And you are certainly blessed with these realizations at

your age. I think I had a few, but not 'tilll 27!

~ Gretchen