Hi Everybody!

[Guest guest]

Hi All,

I finally got back online. Our phone company had some major problem and

our end of town had no phones for a day and a half, so I was out of touch.

Everytime we went by where the problem was there were at least 8 telephone

trucks and workers had a ton of twisted wires pulled out. It didn't look

like we were ever going to get phone service again. So here I am and 63

messages later I am back online.

Welcome to Francis and . I wrote to before the outage, I was

so glad to hear from another person from Indiana. As we all know that works

two ways. Its bad that another person passed away from cjd but glad to

know we can give support to others.

To let the newcomers know, we are having a conference in Indiana in June

of 1999. The information is on the homepage.

http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm

Go to the left side of the page and click on the conference. It prints out

really great.

I received this message from Brown this week about the

conference.....Dear Mrs. Hawkins:

Thank you very much for your kind invitation to come and speak to the

assembled group of CJD Voice members. I can at least tentatively accept

the invitation, although I will have just returned from Europe, and of

course my coming will depend on the NIH's willingness to pay the costs

involved, which I do not think will be a problem.

I would appreciate having an idea of about how many people you expect to

attend, and exactly what you would like me to speak about, and some details

of your program during the 3 day session. It is likely that I would only

be able to stay for one day, but this might change.

Sincerely Brown

So there is another researcher interested in talking us. I think that the

conference is shaping up really well. I am still waiting for more new

reservations and also you need to write down questions that you would like

to ask the doctors. There will be question and answer times. a G.

sent me some good suggestions too for the conference. The answers from the

researchers on the cremation and the ashes was very very interesting, it

was nice that you took the time out to find that information.

Thank you Pat for telling me about the CJD foundation. I wondered why I

hadn't heard from them. Pat told me they are going to put it on their

website. Dealler is going to put it on his and also Tom Pringle.

So it is going to be advertised quite a lot.

As to Vicki, my thoughts are with you right now. Even though you are in

Florida with your mother-in-law and won't read this till later, one year

ago we were in the waiting mode too. Friday will be the one year

anniversary of our mothers passing. I have got to say that every

day....even every hour I think of her with a heavy heart, but working on

getting CJD noticed and helping with support to other people has helped

make it easier to get through.

To Sheryl.....I read your message right before the phone line went down.

It was my mother to a tee, right before she passed away. She had developed

a low grade fever like the one you talk about too. They made sure she

didn't have any infections and it seems this isn't unusual for someone

about to die. In regards to the feeding tube, we had one through her nose

when she went to hospice. They suggested that we think about having it

taken out. The body doesn't need the nourishment when it is about to die.

It goes into a slower mode and takes care of itself. We had not made the

decision yet but the feeding tube became blocked and they removed it. We

had asked if she lasted longer than anticipated could we put it back

in...they said of course. Mom lasted only six days after that. We feel

that it was a very good decision not to have it in. The heart slows down

and cannot pump out the fluids and that causes the buildup in the lungs

with the heavy gurgling breathing. Mom passed away very quietly and

peacfully.

I saw Pat sent a message through about hospices....I recommend them highly.

They are a place to go to die with dignity. They know how to make it

easier for the patient and the family.

Well, I have made this long enough...it was much easier doing it this way

then sending each individual message.

Very Sincerely,

Robin Hawkins