(No subject)

[Guest guest]

Barbara-

I would be happy to be the contact for Colorado. Please let me know what I

can do to help!

[Guest guest]

In a message dated 10/7/98 4:31:27 PM Pacific Daylight Time,

civihardt@... writes:

<< If you don't have a contact for New York, or Long Island I would like to

participate. Thank you for considering me. Jill >>

Jill, thank you so much! If you want one, or both, they are yours! Take your

pick!!

Thank you. I will add your email address when you let me know which state you

want! This is terrific!

[Guest guest]

In a message dated 10/7/98 4:32:53 PM Pacific Daylight Time,

civihardt@... writes:

<< If you don't have anyone for New York, or Long Island I would be honored to

be participating in being a contact. Thank You Jill >>

You are now a contact, just let me know if you want one or both. Your choice!!

Thanks!!!!! from the bottom of my heart!

Barb

[Guest guest]

I can also be a contact with the State of New Jersey. I am active with he

State Dept of Health and other agencies.

Marie Kassai

[Guest guest]

Great!!

I also will send material to Dr.Cummings at UCLA.

Gloria

[Guest guest]

In a message dated 10/7/98 6:28:39 PM Pacific Daylight Time,

civihardt@... writes:

Jill, I thank you. You can have both. I am putting your email on both, so you

will recieve email from both...... I need someone in PA.

Just had a man in CA write that his father in PA has CJD. Would love to

contact someone from that state to help him... So depressing.

Thanks,

Barbara

<< Barbara,

If no one wants New York as a state I will gladly take it on. I will cover

Long Island as well. Thank you very much. Jill >>

[Guest guest]

If you don't have a contact for New York, or Long Island I would like to

participate. Thank you for considering me. Jill

(no subject)

>From: 91434@...

>

>We have a 'CONTACT' for each of the following states:

>New Jersey: Janet

>Texas: Bev

>Alabama: Theresa

>Washington State:

>

>Are there any of you out there willing to be the contact for a state??? It

>would be so much help!

>

>Thanks,

>Barbara

>

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

>

[Guest guest]

I will be the contact for Indiana. Robin

----------

> From: 91434@...

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

> Subject: (no subject)

> Date: Wednesday, October 07, 1998 5:57 PM

>

> From: 91434@...

>

> We have a 'CONTACT' for each of the following states:

> New Jersey: Janet

> Texas: Bev

> Alabama: Theresa

> Washington State:

>

> Are there any of you out there willing to be the contact for a state???

It

> would be so much help!

>

> Thanks,

> Barbara

>

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

>

[Guest guest]

Barbara,

If you don't have anyone for New York, or Long Island I would be honored to

be participating in being a contact. Thank You Jill

(no subject)

>From: 91434@...

>

>We have a 'CONTACT' for each of the following states:

>New Jersey: Janet

>Texas: Bev

>Alabama: Theresa

>Washington State:

>

>Are there any of you out there willing to be the contact for a state??? It

>would be so much help!

>

>Thanks,

>Barbara

>

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

>

[Guest guest]

Barbara,

If no one wants New York as a state I will gladly take it on. I will cover

Long Island as well. Thank you very much. Jill

Re: (no subject)

>From: 91434@...

>

>In a message dated 10/7/98 4:31:27 PM Pacific Daylight Time,

>civihardt@... writes:

>

><< If you don't have a contact for New York, or Long Island I would like to

> participate. Thank you for considering me. Jill >>

>

>Jill, thank you so much! If you want one, or both, they are yours! Take

your

>pick!!

>

>Thank you. I will add your email address when you let me know which state

you

>want! This is terrific!

>

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

>NewHoo Web Directory -- built by an army of volunteer editors

>*** Now the 4th largest human-edited directory of the Web! ***

>http://www.NewHoo.com/ " HUMANS do it better "

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

>If you have any questions, problems, concerns, etc... please contact Liz at

LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or

Beverly G at Bevalso@....

>

[Guest guest]

Barbara-

I am willing to be the contact for Florida. I am rather new, so let me know

what I need to do.

Funchess

[Guest guest]

In a message dated 10/8/98 5:50:28 AM Pacific Daylight Time,

civihardt@... writes:

<< Do you know what part in PA. my sister lives in Dillisburg but is not hook

ed up to a computer yet. If he's close I'm sure she would reach out and

call. Keep me posted thanks, Jill >>

No, but I will ask, try to find out! Thanks Jill.

[Guest guest]

Barbara,

Do you know what part in PA. my sister lives in Dillisburg but is not hook

ed up to a computer yet. If he's close I'm sure she would reach out and

call. Keep me posted thanks, Jill

Re: (no subject)

>From: 91434@...

>

>In a message dated 10/7/98 6:28:39 PM Pacific Daylight Time,

>civihardt@... writes:

>

>Jill, I thank you. You can have both. I am putting your email on both, so

you

>will recieve email from both...... I need someone in PA.

>

> Just had a man in CA write that his father in PA has CJD. Would love to

>contact someone from that state to help him... So depressing.

>

>Thanks,

>Barbara

>

>

><< Barbara,

> If no one wants New York as a state I will gladly take it on. I will cover

> Long Island as well. Thank you very much. Jill >>

>

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

>

[Guest guest]

In a message dated 10/8/98 2:13:36 AM Pacific Daylight Time, FunTally@...

writes:

<< I am willing to be the contact for Florida. I am rather new, so let me

know

what I need to do. >>

Hi , I have the Florida Map ready to add the little red dot(s) in the

appropriate county or counties. Can you give me info for your loved one to

add to FLA?

Thanks,

Barbara

[Guest guest]

Barbara - Here is the info for the Florida map

Name: Karl Funchess

DOD: Jan. 20, 1988

Location: Panama City, Florida

Age at onset: 61

Age at death: 62

Is there any other information that you need? Thank you so much for doing

this.

[Guest guest]

Ok, Ana, I have you for Connecticut and Candy for Wisconsin... Great!! Thank

you all, you are all wonderful!!

Barbara

[Guest guest]

Ok, Ana, I have you for Connecticut and Candy for Wisconsin... Great!! Thank

you all, you are all wonderful!!

Barbara

[Guest guest]

Ok, Ana, I have you for Connecticut and Candy for Wisconsin... Great!! Thank

you all, you are all wonderful!!

Barbara

[Guest guest]

Regarding death records, at least in the state of Texas, death certificates

are not public record. I am a genealogist and the records were closed in the

late 70s because illegal aliens were going to the court houses in Texas,

looking up deaths and stealing their identities in order to get instant

citizenship and benefits. Of course, as you say, obituaries are printed in

the newspaper. I talked to several families of CJD victims here in Texas and

they were not comfortable using full names on the Watch page, but they agreed

to the use of initials. I had another thought along these lines that if full

names were listed, some unscrupulous person, knowing which county they live

in, could look up the surviving spouse and harrass or try to con them.

Beverly G.

[Guest guest]

Vicki,

our prayers and thoughts go with you for a peaceful conclusion...

Boss

[Guest guest]

Pamela,

Yes, absolutely!!!! I believe much if not all of my neurological

problems began from insomnia which was largely stress-related. Then

when I began treating insomnia with meds, I think I set into motion a

whole host of imbalances, one of which is the aggrivation of RLS. Maybe

not very medically sound, just MHO.

Jeff

Colo. Spgs. CO

Pamela E Hamiltonstubbs wrote:

>

>

>

> A member of the Central Virginia RLS support group ask me to find out if

> any out there has a problem like his.

>

> The RLS keeps him awake and he may get only 2-3 hours of sleep. If this

> happens the aching and tingling of the legs makes it impossible for him

> to walk. He must stay in bed and sleep a little longer then he can get

> up and walk.

>

> Has anyone noticed if sleep deprivation makes RLS worse.

> Thanks Pamela

>

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

>

[Guest guest]

Dear Liz, Thanks for the words of love and encouragement. You better be

careful if you get to much better God is going to call you home too. But

for now lets hope he lets us keep our special angel, we need you to much.

Nancie

[Guest guest]

Hi Kathy,

I have found neurologists (at least) to be very receptive and helpful when

trying to sort out sleep disorder symptoms. It was my neurologist who

prescribed the sleep study that uncovered my PLMD. When I began research on

the subject and found out about RLS, he was very open to discussing it.

First, he wanted to rule out peripheral neuropathy and other serious

neuro-muscular disorders. Then he laid out the preferred course of medical

treatment, which landed me on Neurontin, which I have found (except for the

cost) very helpful. When I moved out to Colorado, I found a neurologist

here equally open to discussing RLS. I believe RLS is taken seriously by

the majority of the medical community, especially from what I am reading on

this list. However, one cannot speak for every Dr...

It is possible to have RLS without PLMD (Periodic Limb Movement During

Sleep), although many of us have both. I don't know what kind of Dr. you

are considering seeing, but if yours doesn't take you seriously, you might

investigate a neurologist.

Good luck.

Jeff P.

45 y/o

Colorado Springs, CO

(no subject)

>

>

>Hello to everyone!

>

>I'm trying to sort out my symptoms so that when I go to my Dr. I won't

>sound like a raving lunatic! Lately the evening (usually watching TV) leg

>restlessness is getting out of control. I am compelled to continually crack

>my toes (mainly the left leg is affected) and if I try and remain still I

>end up with such a build up of energy that I have to shake my leg

>violently. I've always woken up many many times each night and been tired

>during the day, but my husband of 12 years swears that he doesn't notice

>anything strange when I'm sleeping...I am curious what experience others

>have had when approaching their Dr. on this topic for the first time. I am

>35 and otherwise quite healthy. I expect that my good old Dr. will brush

>this off and say " Don't worry, you're fine " . I'd also be willing to try a

>sleep clinic to see if there is anything going but if I slept like a baby

>I'd feel like a moron....Any input would be appreciated. Thanks!

>Kathy

>

>

>

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

>

[Guest guest]

In a message dated 11/30/98 9:28:56 PM Eastern Standard Time,

j7160@... writes:

<< Hope you are closer to some answers Sharon, sounds like they are really

interested

in helping Clayton.>> They are and they know his diet restrictions so not

only do they have to teach him to eat -- but teach him to eat what he is able

to eat -- bland -- yucky food -- but at least it is food.

>> P.S. I went on my first job interview today. I haven't worked since

was

born since he has been so sick. Keep your fingers crossed for me, I will

find out

Wednesday afternoon about the job but I think I may have gotten it.

Unfortunately, spiked a 103 fever tonight so I am not sure they are

going to

be able to do the small bowel follow through tomorrow. He also is wheezing.

We

will see how he feels in the morning. >>

I will keep my fingers crossed about the job.

ALso I hope that is feeling better soon and that they can proceed with

the tests. keep us posted.

Also, are you coming east to see Dr. Sampson or has that been put on hold?

Let me know.

Love,

Sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs,

wheat), g-tube, Nissen and possible latex allergy, some DD, undiagnosed neuro

issues and sensory integration disorder)

[Guest guest]

could you please remove me from the CJDonelist, Thank you

sissy