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Hi ,

Nice to see you back on CJD Voice. I'm sorry to hear that it turned out you

have familial CJD. Hopefully with all the research going on there will be

treatments and a cure in the not to distant future.

Debbie

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WELCOME BACK LISA!!!! So nice to have you back, we missed you.

a G.

----------

To: CJDVoice (AT) onelist (DOT) com

Subject: HI

Date: Saturday, October 24, 1998 3:16 PM

Hi Everyone...

My Name is ....

I use to be a member earlier this year but left when I moved interstate...

Since my last correspondance we found out that we have familial CJD....

Still learning heaps...

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Hi Beverly,,,,

I'm in Australia.....

Re: HI

>From: BevAlso@...

>

>:

>Welcome back! It is good to hear from you again. I remember you, but I

can't

>remember if you are from the States or UK?

>Beverly G.

>

>------------------------------------------------------------------------

>

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Hi Beverly,,,,

I'm in Australia.....

Re: HI

>From: BevAlso@...

>

>:

>Welcome back! It is good to hear from you again. I remember you, but I

can't

>remember if you are from the States or UK?

>Beverly G.

>

>------------------------------------------------------------------------

>

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Hi Debbie...

Thanks,,,who knows whats in the future regarding CJD?/

You never know...

Re: HI

>From: DebbieOney@...

>

>Hi ,

>

>Nice to see you back on CJD Voice. I'm sorry to hear that it turned out

you

>have familial CJD. Hopefully with all the research going on there will be

>treatments and a cure in the not to distant future.

>

>Debbie

>

>------------------------------------------------------------------------

>

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Hi Debbie...

Thanks,,,who knows whats in the future regarding CJD?/

You never know...

Re: HI

>From: DebbieOney@...

>

>Hi ,

>

>Nice to see you back on CJD Voice. I'm sorry to hear that it turned out

you

>have familial CJD. Hopefully with all the research going on there will be

>treatments and a cure in the not to distant future.

>

>Debbie

>

>------------------------------------------------------------------------

>

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HI a,,

Thanks for your encouragement the other day,,,I really appreciated it..

HI

>Date: Saturday, October 24, 1998 3:16 PM

>

>Hi Everyone...

>My Name is ....

>I use to be a member earlier this year but left when I moved interstate...

>Since my last correspondance we found out that we have familial CJD....

>Still learning heaps...

>

>

>

>

>------------------------------------------------------------------------

>

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HI a,,

Thanks for your encouragement the other day,,,I really appreciated it..

HI

>Date: Saturday, October 24, 1998 3:16 PM

>

>Hi Everyone...

>My Name is ....

>I use to be a member earlier this year but left when I moved interstate...

>Since my last correspondance we found out that we have familial CJD....

>Still learning heaps...

>

>

>

>

>------------------------------------------------------------------------

>

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Hi Janet,,

Yep that was me :)

It took me a while to be able to get back with all you guys,,,(emotionally

speaking)...

Re: HI

>From: BetThePony@...

>

>Hi ,

> Welcome back. I'm fairly new to CJDVOICE myself. But I chatted with a

> from Australia. Is that you?

>Janet

>

>------------------------------------------------------------------------

>

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Hi Janet,,

Yep that was me :)

It took me a while to be able to get back with all you guys,,,(emotionally

speaking)...

Re: HI

>From: BetThePony@...

>

>Hi ,

> Welcome back. I'm fairly new to CJDVOICE myself. But I chatted with a

> from Australia. Is that you?

>Janet

>

>------------------------------------------------------------------------

>

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,

It sounds like the time out you had was a way to get alright with your own

situation. You sound and seem so optimistic now, and that is great! We

all will have to work away at increasing awareness, finding all the cases

and increasing the pressure for research and then maybe all our dreams will

come true.

Your Welcome and remember I am here anytime!

a G

----------

>

> To: cjdvoice (AT) onelist (DOT) com

> Subject: Re: HI

> Date: Sunday, October 25, 1998 2:14 PM

>

>

>

> HI a,,

> Thanks for your encouragement the other day,,,I really appreciated it..

>

>

> HI

> >Date: Saturday, October 24, 1998 3:16 PM

> >

> >Hi Everyone...

> >My Name is ....

> >I use to be a member earlier this year but left when I moved

interstate...

> >Since my last correspondance we found out that we have familial CJD....

> >Still learning heaps...

> >

> >

> >

> >

> >------------------------------------------------------------------------

> >

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  • 5 months later...
Guest guest

Please disregard this ridiculous " gas out " day idea. Your are kidding

yourself if you think you are going to hurt the oil producers of this world.

You will only be hurting poor working class stiffs like myself who are trying

to make a living off of .07 per gallon.

The sad fact that people don't know is that, you can't make a living from

selling gasoline!!!!!

If anyone wants to debate this privately, please write me at

strai6098@....

Sheryl

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Guest guest

Robin,

Yes, a large percentage is tax. In VT .38+ is tax and in a lot of states,

it's even higher, but we in the US are spoiled. We pay some of the lowest

gas taxes in the world.

Sheryl

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  • 6 months later...

In a message dated 10/19/99 6:37:06 PM Pacific Daylight Time,

pmzf@... writes:

<< was wondering if any kids on the list, who are school age, have a medical

ID bracelet. The preschool director suggested it, but i dont' know what to

put on it-DON " T FEED ME, for AJ's. >>

is 12, he has multiple med. prob. he has a medic alert bracelet that

opens and I have a paer inside with his med. info.

Cathy

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  • 2 months later...

Hi

Welcome. I am Robin, and I live in New York. I was

diagnosed when I was 17 years old. Glad you could join

us.

=====

Wishing you a safe and happy holiday

__________________________________________________

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  • 5 months later...
Guest guest

Hi, ...

Thanks for the Naprosen suggestion. I tried that for my neck problems. About

the only thing that works for me are narcotic type drugs such as Codeine,

Talwin, Xanax, etc. I would use these to relieve the pain, but they don't

seem to do very much for the cramping. I think that in my case, most of the

foot pain is caused by the cramps, which the pot really helps and many times

completely takes away. I have found that when the cramps go away, the pain

also goes away. I think in addition the pain cycle is broken and sometimes I

can get through the entire next day without taking anything for pain. And

besides, the narcotic drugs are very habit forming and I think they can

actually cause their own pain with long term use because of the way they work

on the neuro-receptors. I founded a chronic pain support group with another

guy many years ago and built it up to about 50 members. There were several

members who used marijuana successfully for relief, but I will say that it

did not work for a lot of the members. One nice woman who was 86 years old,

used to soak marijuana leaves (supplied by her Mexican gardner) in rubbing

alcohol. After about a week of soaking, she would wring out the leaves and

throw them away. Then she would use the remaining liquid, soaked in cotton,

to rub on her deformed, highly painful joints. She claimed that the pain went

away almost immediately. The rest of us preferred to drink the alcohol and

smoke the pot to gain he same effect. :o) Anyway ... my feet hurt. See you

later gang. *hugs* to all ...

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  • 3 weeks later...
Guest guest

Welcome Liz, My name is Martha. I am glad you could join us. I am 47 and live

in Colorado. I have had CMT since I was 12 probably earlier. I was brought up in

Sanford, Maine. I love the Fall in New Hampshire. You will get some good

information on here.

rasbun@... wrote:

Hello, my name is Liz. I am 16 and I have CMT ( well obviously) I live in New

Hampshire. I was diagnosed when I was 5, I go to Shriners Hospital in

Springfield, Mass. I heal the best when I am around horses. :) I ride too.

Well, hello.

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

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

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Guest guest

Hi Liz,

Shriner's is great Hospital. Its probable the worlds best burn treatment

center, along with the great work they do in other fields. So Hi neighbor,

glad to have you aboard.

E

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Guest guest

Hi Liz and welcome.....

My name is Jeanie and I live in the state of Oregon.

I've had CMT since age 5 also, I am 39, married, 2

kids (f/16 & m/12). I remember being 16 with my CMT. I

was terrified that no guy would ask me out due to my

CMT. I was wrong. But, they were slow at approaching

me due to thier friends.

Glad your on board.... Jeanie

--- rasbun@... wrote:

> Hello, my name is Liz. I am 16 and I have CMT ( well

> obviously) I live in New

> Hampshire. I was diagnosed when I was 5, I go to

> Shriners Hospital in

> Springfield, Mass. I heal the best when I am around

> horses. :) I ride too.

> Well, hello.

>

__________________________________________________

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  • 3 weeks later...
Guest guest

Hi , nice to meet you.

Do you wear AFOs to help your feet and your walking?

Do you swim?

I'm in Seattle, type 2.

Voice activated computer programs are a great help to CMTers with weak hands.

Kat

>^.^<

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