Welcome

[Guest guest]

Hi , I am so happy you found . I love to talk to

other Moms with CMT that have CMT kids. I am 35 I have 5

children 3 with CMT. 2 boys and a girl. ages 14, 12.and 10.

Can you tell us more about your life and how you raised your

children? Did your child without CMT feel diffrent? I have

been told that the kids without CMT feel guilty that they

don't have it.

[Guest guest]

Thank you for the welcome Gretchen. I'm going to go and take a peek

around at all the wonderful things your group has to offer.

Take care,

Snugglebunny

[Guest guest]

:

Welcome to . I'm 41 and have four children. Three of which I had

before I had any idea

that I have CMT. I got pregant with our fourth child about 2 1/2 yrs. after

I was diagnosed but not having him was never a questions for us. My husband

has rhuematoid arthristis which can be very hereditary. His grandfather had

it and out of about 23 grandchildren my husband is the only one with it. I

was adopted so have no idea my family history. So far none of our children

have been diagnosed with CMT. I would never want to be without any of my

children, they bring such joy and laughter to your life. One of the things I

treasure most is cuddling up in a chair with my little guy and reading or

story or watching tv together. Each one has been a gift. I truly believe

that eveyone needs to take one day at time. There are a lot of other problems

in life other than health issues to deal with.

On the topic of your former boyfried I would like to simply tell you about

my personal marriage. My husband had two attacks of Guillian Baire before

he was out of high school. Before we were engaged he had told me about that

condition and that the doctors had told him there was a very good

possibility that he would never be able to have children because of it. He

was very concerned that I wouldn't stay with him because of it. I simply

told him that didn't matter if we couldn't have our own children, we could

adopt. True love bears/understands all things. Keep looking for Mr. Right,

he's out there somewhere!! You're still young.

Keep your head up!!

Jane

[Guest guest]

Welcome , I have had cmt all my life. i have four children and two

granchildren. three of my children have cmt, one of my grandchildren has

cmt, she is 6. I would not change anything in my life, it has been good.

Dont worried about the things you cant do, think about all the things you

can do.It will get better as you get older and except your cmt. You will

meet the right person day. my husband has been my bigest suport. my two

daughters have also meet very nice man. You can have a good life, even with

cmt, but you have to help yourself a little. I walk funny two, but who

cares, were not all perfect. there will always be rude people who stair or

laught at anything that is different then them, these are people you dont

need to know. I hope this helps, I am always hear if you need to talk. good

luck.

teresa

[Guest guest]

Hi ,

It is so nice to meet you. I am in USA/Missouri near St. Louis. Looking

forward to being your friend too.

Barbara from Missouri

[Guest guest]

Welcome to the group.

Stan - Oregon - Hopefully Soon Texas....

[Guest guest]

,

Welcome. Would you care to talk about your symptoms? It may be helpful to the

group members.

Stan

[Guest guest]

Welcome , I live in New York, so I can't help you with the doctors, but

anything else we can help you with we'll do our best. Again welcome to the

family. B.

[Guest guest]

Welcome , thanks so much for introducing yourself. I am a toe

walker also and was teased in Jr. High about it (although was teased by

boys only, so not really sure if this qualifies as bullying, or just

young boy/girl stuff) It was upsetting nonetheless and like you I just

handled it inwardly. I too went to a private school and things there

were much different and more of my needs were met and I just fit in

better.

Strange - I used to live in LA, am just up 101 from you in SB County.

Interesting

about your redesigned shoes and orthotics. I may look into this. I'm

also wearing

orthotics, just take them out and place in other shoes. Really like your

idea of the 10

minutes of power napping too. I am all for naps - refreshing!

Again, welcome to .

~ Gretchen

http://www.cmtworld.org

http://www.aicmt.org

http://www.neurologychannel.com/charcot/

[Guest guest]

Hi , I am 36 . I have had cmt since I was 4. I live in Los Angeles

county. What doctors do you see?

jenny

[Guest guest]

Welcome . Thank you so much for introducing yourself. No one in my

family had any neuromuscular problems or CMT either. Spontaneous

mutations do occur. Very interesting about your art therapy program. At

one time I considered this, but changed to Art History.

As for your question about dress shoes, try this place

http://dressease.com/ the company was owned by a woman with CMT and she

said the shoes accommodate AFOs. However, I have not personally tried

the shoes, since I don't wear AFOs.

Again, welcome to .

~ Gretchen

http://www.cmtworld.org - Updated Daily

http://www.aicmt.org - Has CMT Rehabilitation Management Book (outlines

7 stages of CMT)

http://millercenter.uchicago.edu/learnaboutpn/typesofpn/hereditary/charcotmariet\

ooth.shtml

http://www.neurologychannel.com/charcot/

[Guest guest]

: Who is Al Dupont? Where is he from? My son also has issues with his

heel cords/Achilles tendon. He is currently using orthotics-- he is also

growing very quickly and the podiatrist isn't sure weather the pain is because

the tendons, etc cannot keep up with his foot growth(size 15 shoe, 6'2 " @ 12 ).

The orthotics have really helped with the pain in his heels. Welcome to the

group, glad you found us. What meeting are you talking about. I too live in PA

and would be interested in knowing more about it.

Sharon

[Guest guest]

Welcome ,

I would be very interested in your information for your next meeting. I am in

Montgomeryville area and have a 14 yr son with CMT.

[Guest guest]

Welcome . So glad you are here. I am Cathleen from Arkansas and I am 50

years old. I was a very clumsy child and hurt often but I wasn't diagnosed

until 1994. I cried to know I wasn't crazy and imagining the pain I was in by

this time. I like to look on the sunny side of life and my sense of humor keeps

me going. I am married to a great guy who helps me and is always finding ways

to adapt things to make my life easier. I will look forward to reading your

post.

[Guest guest]

Welcome : I am so glad that you have officially joined . I just

recently found out about the support group. I was having my annual visit at Dr.

Scherer and we spoke about him speaking at your group. I was unable to attend

but would really like additional information about meeting times and places.

Again welcome!

Sharon

[Guest guest]

welcome to the group. glad to have you here, we are always learning from each

other. Feel free to share qwith usa. Cathleen in Arkansas ( a texan by birth

once a texan always a texan.LOL)

[Guest guest]

Hello , welcome.... I too have had major feet surgeries. One in 97 the

other eight months later. I couldn't put my feet flat on the ground. I could

wear nothing lower than a 2 " heel. Thanks to the surgeries, I can now walk

with my feet flat on the floor ! Such a miracle. I also had my arches lowered,

they were extremely high. I know what you are going thru, but it will all be

worth it !

Take Care,

[Guest guest]

Hello and welcome. My name is Betty and I live in Lancaster, PA, and I

also have Dr. Zachary as my neuro and I think he is a great doctor

also. Where in Pennsylvania do you live?

Betty

[Guest guest]

Welcome !

rQn I (The HNPP guy! " Way over here in Oregon)

[Guest guest]

Welcome , thanks for the introduction. You live in a beautiful

state. I lived there for 3 years. (Guthrie/Edmond area) The redbud

blooming trees in spring were gorgeous.

~ Gretchen

[Guest guest]

Welcome !!

I am a newbie to this group also and have already met some very nice people and

have learned a great deal!

[Guest guest]

Welcome , glad to have you as a part of the group. ) I, too, am in

Oklahoma - Okc; what part are you in?

[Guest guest]

Welcome ,

I'm Liz. I'm 20 with CMT since I was 3. I am originally from NH, but I go to the

University of Kentucky. If you are ever interested in talking to someone your

own age, just e-mail me!

Liz

[Guest guest]

Hi ,

Welcome, my name is Im 14 and have CMT. I am from PA.

[Guest guest]

: I'll help ya all ya want if I can move from Oregon (cold) to Florida

(warm).

Welcome aboard!

rQn I