Re: Think twice

[Guest guest]

Hi I didnt know I had CMT when I had my children. I have one child with CMT

and one that shows no signs.. Would I have had my children if I had known

about the CMT.. ? Yes I would, no doubt in my mind. Life is full of challenges.

All children are precious no matter what the birth defect... I would be lost

without my children. We have had pretty much a normal life...Carol

[Guest guest]

I believe that facing challenges makes us stronger people, and that includes

our children! Even though I have this disease, I have a wonderfully

fulfilling life. My husband and I have taught our kids, now 26, 22, and 17

to face the challenges of life with grace, strength, and faith. If they

develop this disease or other diseases, they have the skills to cope. Who

are we to judge our " children's ability to have a full and satisfying life " ?

That definition is what we make it, not someone else's perception of what it

should be. There's no such thing as perfection. As bad as this disease is,

I always remember that it could be a lot worse, and I am grateful for the

gifts I have been given. My mom taught me two very important lessons before

her death in 1994: My creator will not give me more of a burden than what I or

can handle, and whenever a door shuts, a window opens. Lots of

windows have been opened because of my disease. I am a stronger person for

it.

K.

[Guest guest]

WOW YOU ARE SO RIGHT.

[Guest guest]

I am really feeling disturbed by words like " birth defect " and

" something wrong " or being " afflicted " or being a CMT " sufferer " .

1) I do not have a birth defect.

2) There is nothing wrong.

3) I am not afflicted.

4) I am not a sufferer.

5) I am not unhealthy.

I am a woman who has CMT disease. Period. I was a child with CMT

disease. Period.

That child grew up to be strong and healthy. I am stronger today not

because of CMT, but because of my 12 step participation, combined with

guts, moxie, (some) talent and using my best muscle - my brain.

~ G

[Guest guest]

Hooray Gretchen!!!!!!!!!!!!!!!!!!!!!! You are so right!!!!!!!!!!!!!!!!!!

Negative titles just make you weak keep the positive

thoughts!!!!!!!!!!!!!!!!!!!!!!!!! Cathleen in Arkansas

[Guest guest]

Well said, Gretchen !!

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

From: Gretchen Glick

Sent: Saturday, December 06, 2003 10:19 PM

Subject: Re: Think twice

I am really feeling disturbed by words like " birth defect " and

" something wrong " or being " afflicted " or being a CMT " sufferer " .

1) I do not have a birth defect.

2) There is nothing wrong.

3) I am not afflicted.

4) I am not a sufferer.

5) I am not unhealthy.

I am a woman who has CMT disease. Period. I was a child with CMT

disease. Period.

That child grew up to be strong and healthy. I am stronger today not

because of CMT, but because of my 12 step participation, combined with

guts, moxie, (some) talent and using my best muscle - my brain.

~ G

[Guest guest]

Good Day All:

This whole topic of guilt and having or not having children because I/we

have CMT is a whole lot disturbing to me.

I am a 54 year old male who was diagnosed with CMT1A via DNA testing 3 years

ago. I have a 14 year old son who I suspect has CMT (toe walker, sprained

ankles and hand tremours). Obviously he was born long before I even knew CMT

existed....therefore I do not feel any guilt because I may have passed along

CMT to him.

Life is just too precious to be occupied with things like blame and guilt.

Life is a gift....and I truly enjoy life as does my son. He is a true

blessing and wonder. He just made the High School basketball team, and is

beaming from ear to ear.

To quote J. Fox who is a great Canadian actor and suffers from

Parkinson's disease, " we are all given a bag of hammers in life to deal

with " . All of us, and that means you and me. Life's challenges are what

makes us all grow. Who are we to say what makes anyone, even our children

happy.

There is a great book called The Road Less Travelled written by Dr.

Peck. The first 3 words in the book are " life is difficult " . In the

following paragraph he goes on to that once you accept the fact that life is

difficult, you transcend it, meaning it no longer matters.

He also defines love in this book as " extending one's self for one's own

spiritual growth or that of another " . A very unique definition, but contains

a lot of merit.

Life does not have to mean a whole lot of grandeur. If we only have 2 great

friends in the whole world we are truly blessed.

These are the lessons we need to teach our children. Give them good

self-esteem and life will be wonderful for them, no matter what challenges

they may face. I agree with ...we will not get more than we can

handle each day.

I have attached " It's OK " , which I hope you all can open.*

Love to all!!!!!!! I sure am glad to be alive.

Beckingham

Corporate Nice Guy * NOTE: and all, our list does not

accept attachments. ~ GG/Moderator

[Guest guest]

Hi Gretchen.........RIGHT ON!!!!!!!!!!!

Beckingham

Corporate Nice Guy

dgbeckingham@...

(519) 832-3225

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

From: " Gretchen Glick " <liliwigg@...>

< >

Sent: Saturday, December 06, 2003 10:19 PM

Subject: Re: Think twice

> I am really feeling disturbed by words like " birth defect " and

> " something wrong " or being " afflicted " or being a CMT " sufferer " .

>

> 1) I do not have a birth defect.

> 2) There is nothing wrong.

> 3) I am not afflicted.

> 4) I am not a sufferer.

> 5) I am not unhealthy.

>

> I am a woman who has CMT disease. Period. I was a child with CMT

> disease. Period.

>

> That child grew up to be strong and healthy. I am stronger today not

> because of CMT, but because of my 12 step participation, combined with

> guts, moxie, (some) talent and using my best muscle - my brain.

>

> ~ G

>

>

>

> For more information, we recommend the

> CMT Today Magazine - $40 per year (6 issues)

>

> CONTACT:

> CMT Today

> R.R. #1 Hillsburg ON

> NOB 1Z0 Canada

>

>

>

>

[Guest guest]

Not have my daughter? I don't think so.................life is better with

CMT than not living at all!

Bob in Indy

[Guest guest]

I feel compelled to write about this subject.I am afraid that I just do not

share your enthusiasm for life with CMT. I was told at 13 that there was no

cure, no treatment, just deal with it- that is exactly what I have been doing

for 16 years.

You all talk about surgeries, meds, etc, etc. Here in PEI, there are no

surgeries, no meds, no treatments. Just an MDA support group that will try to

get you a wheelchair when the time comes.

I understand that you reserve the right to kick me out of this group for not

being all upbeat and crap. I just dont think I can take another posting about

all the great advances that you have in the south. Meanwhile I will try to

figure out if I can stand the fact that the man I love is leaving me because he

doesn't want deformed children. Don't try to tell me that he is just ignorant, I

already know that. The problem is that all people where I come from are of this

mentality, so gonna make it pretty friggin hard to find a date for New Year's.

[Guest guest]

JENN,

OMG YOU ARE SO WRONG THINKIN THIS WAY.YOU COULD

HAVE BEEN BORN WITHOUT LEGS ARE ARMS THEN WHAT. BE

THANKFUL FOR WHAT YOU HAVE . TRY THINKING ON THE GOOD

SIDE AND STOP CRYIN.

JAKE

[Guest guest]

Hey Jake- first off don't shout (all caps in a chat forum is concidered yelling)

at me, because that is no way to introduce yourself.

You would feel the same anout the disease if you lived in this province. There

are not enough GP's and NO neurologists. Any surgery for CMT is concidered to be

cosmetic, so they are not covered .None of the OT's or PT's I have seen have

ever heard of CMT and could not suggest much. Medications and AFO's are not an

option because like most here I do not have private insurance and most of the

meds I hear you talk about are not available in PEI anyway. ( believe it or not,

you can't even get Viagra here)

Besides, you are not surrounded by hicks day in day out. I keep my disease

hidden from most people here. You know why? Becasue no one wants to hire or

marry a " cripple " (as these troglodytes call disabled people here).I am hardly

the type to go crying to anyone about my situation. How many times have you seen

my name on a posting, huh? This is my third in the year or so I have been

getting these postings. If you are curious here are my stats.

I am a 29 yr old single mother (1 son, does not seem affected)

I am on the maitenance crew at the local college, and can out-lift most men I

work with.

I have no other close family

1 close friend

1 GP that refuses to educate himself on my disease

0 neurologists

just lost 1 man that I thought was good

So before you go yelling your very glib, one sided opinions at people, I suggest

you find out some facts about where the other person is coming from. I know most

people in this forum just want the whole world to see what happy, positive and

stong people we are. I just think that it is a little to much to swallow by

times, and that the average Joe's of the world need to understrand the dark

side as well.