Re: Welcome to cjdvoice@onelist.com

[Guest guest]

Please add me to the cjd list. My mother was recently diagnosed with cjd and

I would like to become as informed as possible about the issue. We are going

through the final stages of the disease now and it is difficult. Any support

and information from others who have been through this would be appreciated.

Chatel

[Guest guest]

,

I am so sorry about your mother. I lost mine a year ago November 20th and these

holidays are tough to

handle. You are among people who understand what you are going through and can

offer any and all

support you need. I think one of the hardest parts is the length of time it

takes for a diagnosis to be

arrived at and by that time your loved one is so far away. My sister and I

experienced this. You feel so

cheated. I wish you all of God's blessings and support as you go through this

difficult time.

Lesher

--------

>From: Heartman11@...

>To: linda.lesher@...

>Subject: RE: Re: Welcome to cjdvoice (AT) onelist (DOT) com

>Date: November 27, 1998

>

>From: Heartman11@...

>

>Please add me to the cjd list. My mother was recently diagnosed with cjd and

>I would like to become as informed as possible about the issue. We are going

>through the final stages of the disease now and it is difficult. Any support

>and information from others who have been through this would be appreciated.

> Chatel

>

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

>

[Guest guest]

Dear ,

I am truly sorry to hear of your mother. My husband died almost three years

ago and I know what it all is like. I can only hope that you keep reaching

out to others and know that you are not alone.

Most sincerely,

Gloria in California

[Guest guest]

Thank you for your message. Please add me to your list of people who you

communicate with. I will look forward to contacting you as time goes on.

Hearing fro people whio have been there is most helpful

[Guest guest]

This is Judy Deck, a new participant. My father, Roy B. Deck, died from CJD

here in North Carolina on 1/16/96 after a long struggle. He was diagnosed in

New Orleans in April 1993 and by October was in a nursing home. We brought

him home to North Carolina when the end was near, and were relieved to send

him off to heaven at the end of his long suffering. He was dearly loved and

greatly missed.

We'd never heard of CJD before his diagnosis, and I suspect it was the same

for many of you. We were fortunate to have a great neurologist make the

diagnosis so that we could read up and prepare our family.

I would count it a blessing to serve as a resource for others who are dealing

with the tremendous blow this diagnosis can bring.

[Guest guest]

Hi Judy,

I'm sorry to hear about your dad's struggle with CJD.My Mom Grace

Hallock died from the disease back in September of 1988.At the time we were

told very little about the disease.They gave her 3-6 months to live,and she

died 5 months later.Sometimes I wish we had knew much earlier on what we were

dealing with.Because then maybe we could have kept her from hurting herself in

falls and such.But after listening to people talk about knowing what they were

dealing with for many years,I think that only having months to deal with the

dagnosis was a blessing in disguise.My Mother never knew how sick she was.By

the time she was diagnosed she was too far gone to comprehend any of the facts

about her condition.Six months earlier I had talked her into going to the

Doctors for a physical after she fell and injured herself.At the time the

Doctor told me that her condition was probley related to her hard life and

alcohol drinking.I found out after she was diagnosed that he had told her to

go for further tests.But she had asked him not to tell me because she didn't

want me to be worried.That was my Mom through and through.She never wanted to

bother anyone with her problems.One day in early April of 1988 I woke up to

her crying.She had fallen and broken her wrist very badly.While trying to get

her out of the house to the Doctors she became agitated.And accused us of

trying to hurt her.We had to call an amblulance to get her to the hospital.She

never came back home.She went directly to a Nursing Home from the hospital

after she was diagnosed with CJD.I regret not being able to take care of her

myself in the end.But with a small child in the home and both of us working

full time it wasn't possible.Not a day goes bye that I don't think about

her.Being able to read about other peoples experiences with this disease has

helped me to deal with it.At least now I know that my Mother wasn't a one in

a million victim of this disease that the Doctors whould have us believe.I

have great sympathy for any family that has to go through what my family

did.Maybe now that CJD has more names and faces attached to it things may be

different. Maybe now people will see the disease for what it really is.I used

to be so hurt when people would joke about having " Mad Cow Disease " .Now I try

to take the time to tell those that will listen just how sad the whole thing

really is.

Holly A.

[Guest guest]

In a message dated 99-01-25 06:03:08 EST, you write:

<< cjdvoice (AT) onelist (DOT) com >>

Hi, everyone. My name is Pam . My family has just in the last few

weeks re-located from Kentucky to Wisconsin--in time for the big BLIZZARD...

My father died about a year ago, of CJD (unconfirmed). My sisters and I are

anxious, as I know you are, to find any answers...and to do whatever we can to

help anyone else going through this particular heartbreak.

[Guest guest]

Hi Pam,

I hope that you find the support and compassion that I have found on

this link for CJD info.I've learned more in the past month than I have in the

past 10 years since my Mothers death from CJD.I believe that being able to

chat with other people who's lives have been touched by this terrible disease

can help us all to deal with it a little better.Take care..

Holly