Welcome

[Guest guest]

Thank you Reema.....I have spent about 12 hrs plus since joining

the group and i have learned so much --- i am so thankfull to be

finding some info that can really help me. The research from

and Paolo Vinci should be plastered every where CMT

patients are seen and may i suggest giving the papers to a

physiotherapists. This info is awsome! Good Luck

[Guest guest]

Nice to meet you , welcome to the group.

I am also in Los Angeles and hope to meet you one day.

age 39, 5 children, 3 with CMT

[Guest guest]

Hi !

Good to have in with us, and trust me it's an absolutely wonderful place

for CMT people...

Welcome.

One more thing, the challenge of CMT is something that only CMT people can

understand.. so use it as an excuse/strength/whatever... make it work to your

advantage... (not at the expense of your honesty towards yourself, though).

CMT hasn't denied us brains, you see. Wink.

Best wishes

Reema (21, f, India)

[Guest guest]

,

Just went on your homepage and your pictures are beautiful!!

Jackie

[Guest guest]

Jackie, awwww, thankyou! I just want to bring more color into this world I

feel bad for all those psychedelic clothing designers from the 60s and 70s. Can

you imagine how bummed they must be that everyone wears mostly drab solids now?

>

> ,

>

> Just went on your homepage and your pictures are beautiful!!

>

> Jackie

>

[Guest guest]

Welcome .

Geri from Minnesota

[Guest guest]

Hi ,

You have joined an excellent group. You will find that Gretchen is a wealth of

information and always helps everyone. She really is amazing. There are a lot

of people who are members of this group that have a lot of information also and

are also willing to share and help out.

My son has CMT type 1B (a new mutation) and was just diagnosed in Dec 06. That

was the first time we heard of CMT and I began searching on line, then freaking

myself out by what I was reading, crying, not sleeping, worrying like crazy,

then I found this group and it has done wonders for me and my family. As you

read the posts, you will be amazed at what some of the people are dealing with

and how positively they deal with it. I don't know if I myself have it, my

sister has the same mutation as my son, but where my son is concerned this group

has helped to keep me grounded and calm.

Best of luck to you.

Carmella

[Guest guest]

Hello , and welcome to the group. As my sister Carmella has stated this

group is great! I wish you the best of luck in your quest for answers and

medical help. Here at the group we are all in the same CMT boat! Here for you

if I can help. Still new at CMT myself, only been dealing with the diagnosis

since December of last year. Best to you.

Teri

[Guest guest]

Welcome ....I have had CMT sense I can remember..and I do allot of water

color paintings.

Geri

[Guest guest]

Welcome ,

I think this group is a fantastic resource. I am a new member myself. I really

recommend going through the files if you haven't already. Gretchen's account

'Funny Feet' is inspirational and very encouraging. Also the info on Vit C.

There may be various things you can do nutritionally and supplement-wise to

improve outcome long term. I can identify with your experience of not being

diagnosed. It makes me realize how you often know your own body better than Drs

give you credit for, and should trust your instincts and keep pushing when

you're not getting the answers you need. And that's having worked as a

Dr myself! Best wishes to you and your family.

(from UK)

[Guest guest]

Hi - Welcome to this great group. You will learn so much. I live about 2

hrs north of you. I'm outside ville. I had 2 CMT children plus myself.

Teenage yrs are hard enough.....let alone having extra baggage so to speak.

Barb

[Guest guest]

Thanks to you Barb and everyone for the warm welcome! We are actually headed up

to Marineland soon to swim with the dolphins. My sons are both really looking

forward to doing this. (But I really think I am the most excited!)

We were going to take up to the Mayo but found out that they

will not treat pediatric cases with CMT. So, for right now we are

sticking with Nemours and Arnold Palmer here in Orlando.

is ready to wear AFOs physically - emotionally he won't even

consider them. He refuses to even wear hi-top sneakers. It boggles my

mind...but I guess he'll have to get to these realizations at his own speed. It

absolutely kills me to see people stare at him when we go out. I'm not sure if

I am saying this correctly....I am THRILLED that he is still walking....it's the

way others react that just so ticks me off. Does that make sense? He is such a

handsome kid, 5'10 " tall at 13, a good hearted person; but he is pitched forward

and up on his toes and his gait is so altered...but he refuses to help himself

at this stage of the game.

People shake their heads and scowl...it makes me furious - and of course I don't

show it. It bothers him when he sees people staring, yet will not discuss it

with us.

Oh well...thanks again for the welcome...I look forward to learning and growing

with y'all.

[Guest guest]

Hi - I am 38 with a 3 year old and 4 mo. baby girl. Having CMT can make

things a bit more complicated, but life goes on and it is certainly doable.

Chasing children will take your mind off of the woes that CMT might bring your

way...no time for that:)

Welcome!

Amy Hodge

[Guest guest]

Welcome .....you are kind of my neighbor....I live in Minnesota.

Blessings,

Geri

[Guest guest]

Welcome . There's some good stuff on here.

[Guest guest]

You know ,

You and I and anyone with a visible disability has ALWAYS had to have more faith

in themselves than anyone around them has in them. I say now is not the time to

be weak. Gretchen has provided a great group for us to discuss our situations

but I think we must remember that there are groups for people with other

" disabilities " that we can't see. So, we are no different from anyone else in

having problems.

It's just that no-one believes in us. Well, I believe in you . You wouldn't

be an adult and have gotten where you are without being strong. The very fact

that you had multiple jobs,(like I too have had), means that you've always

supported yourself. I had to believe in myself just to walk down the hall in

H.S. because I had to lean on the walls for support before I got my feet

surgeries. The fact that those doctors worked on my feet must mean that they

believed my feet would get better. And they did. But I still need ankle support.

I think we must be our own family. I haven't talked much about this here but my

family barely gave me any support. In college, I lived in a room (In freezing

Buffalo winters) that had been a front porch of someone's house (for one minor

example). I also worked as a live-in maid to support myself.

Ironically, when I got married my parents finally remembered that I was alive

and bought myself and my husband a queen-sized bed. I had been sleeping on cots

and used beds from previous tenants for 12 years when it was just me. Then when

my son was born they started to help even more. Now they actually care about

where I live and my safety.

Before I could almost never call them for anything. In fact, when I found a

boyfriend who gave me comfort most of all, they would call me when he was over

because they suddenly needed some kind of help. Larry hit the roof when I told

him I had to leave to go help my family. Now, too late, I realize that he knew

even more than I let myself know that they were never there for me but they

wanted to steal any peace I had.

I spent over five years with him and now he's married with two kids. I got

married but not to a man I loved. But, I did plan to have a child and he's now

six and he's wonderful in every way. The thing is I know I need to find someone

like Larry again and to remind myself if I did it before I can do it again.

Nothing lasts forever for anyone. Life doesn't last forever for anyone. But, all

we can do is try.

Dawn

It's not having what you want, it's wanting what you got.

[Guest guest]

Hey ,

Welcome to the site. I am 32 and have suffered physically most of my life from

the disease. It is certainly a hidden disease for me most of my life because up

until a few years ago I hid it well and no one knew I had it. I would avoid any

activities that would make it show such as running, climbing stairs, etc. I was

still able to do mostly " normal " things. I just wanted to blend in and not be a

" disabled " person I did not want anyone treating me any different and I did not

want to be one of those proud to be disabled advocates.

I have been criticized a little for not wearing it all over my sleeves and

edcuated others anx being proud. I actually worked with the disabled for many

years and found it very rewarding but I made sure I didn't let them use their

disablity as an excuse. I also counseled people too and it was easy tohelp

others but when it came to me it was just too hard.

To answer your question about how do people come to terms with the

disorder, well with me I never was able to but I can say this site has helped.

To me it has been a horrible disease and I had to work so hard and continue

working so hard everyday.

I have a daughter who may also have it and I just hope she lives a full

productive life. If you need someone to talk too feel free to contact me.

Andy

[Guest guest]

Hi and welcome.

I truly have an invisible disability because I am so mild in my symptoms (high

arched feet, cold feet, and a bit of numbness on my big toes) but I do think

with age the symptoms may appear. I know already that I suffer from extreme

muscle tightness so I am focused on making sure I am fit and seek specialist

help in keeping stretched and mobile. I am very proactive in trying to

understand things and manage my overall wellness with exercise, diet and

attitude.

I am happy to help you in any way with your project. Email me off list and in

the meantime you can read about me a bit more on my fundraising site - closed

really for 2007 and needing updating, but stay tuned for 2008...

Donna from London

--------------------------------

Please consider supporting my 2007 fundraising activities - click through to

learn more - http://home.earthlink.net/~sponsordonna

[Guest guest]

Welcome -

We see doctors in the Boston area too, and there are ones that are

more 'upbeat & positive'. The neurological unit in Mass General has

several doctors you can talk to. My advice is to not get locked in with someone

who doesn't treat you like a person. Although there is no cure, there are ways

to keep comfortable and optimistic.

This group is a wonderful help.

Jim

[Guest guest]

Hi ,

Welcome to the group! I was diagnosed when I was 18 (although I was

previously diagnosed when I was 3 - my parents kept that from me).

I've found friends and an absolutely incredible husband in my personal life that

look at people for who they are and not what their

limitations are. I also spend quite a bit of time in the gym/pool exercising and

maintaining what I do have which increases my energy levels and optimism toward

life.

Take your doctor's negativity with a grain of salt. Please don't let

him make you cry or become discouraged. Just because he has a " MD "

after his name, doesn't make him the end all and be all of knowledge.

Hugs,

T

[Guest guest]

I live in the FL Keys.

[Guest guest]

So glad you are with us.

Geri in Minnesota

[Guest guest]

Hi :

Welcome to the " family " ...we are all in this together. My CMT has also

progressed alot in the last few years.... we all deal with the ongoing

difficulties of this disease. Appears that you have a positive attitude and

that is definitely the best medicine. Thanks for sharing.

[Guest guest]

In a message dated 12/16/2007 11:23:32 A.M. Eastern Standard Time, epifany97523@... writes:

Hi Qualeen413,I would like to welcome you to the Natural Remedies group. Joy is the owner and I, Michele am co-owner and Marty is the moderator. I hope you enjoy this group, feel free to ask and post away.Blessings,Michele

Welcome to the Group, Qualeen413 : )

~Blessings~

JANEYMerry Christmas!See AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

Well Qualeen, read or post healing experiences/information, it's up to you honey. And Thank you Michele! Love, Joy

[ ] Welcome

Hi Qualeen413,I would like to welcome you to the Natural Remedies group. Joy is the owner and I, Michele am co-owner and Marty is the moderator. I hope you enjoy this group, feel free to ask and post away.Blessings,Michele qualeen412@...