Thank you

October 20, 1998

Also, by being on Geocities we get geocities advertisiing for CJD which we

couldn't get otherwise. So it's the cost of the advertising. I don't know

why I don't have the ads.

<<

Yes, I am sure that advertising pays for it. Free is a good word, so I

have no problem clicking off the advertising. I am concerned that it is

giving others a problem with their computers. Since we are established on

the search engines now and have had so many visitors, it would be a shame

to change it. What else can be done?

Robin >>

October 20, 1998

Yes, I am sure that advertising pays for it. Free is a good word, so I

have no problem clicking off the advertising. I am concerned that it is

giving others a problem with their computers. Since we are established on

the search engines now and have had so many visitors, it would be a shame

to change it. What else can be done?

Robin

----------

> From: 91434@...

> To: CJDVoice (AT) onelist (DOT) com; CJDWatch (AT) onelist (DOT) com

> Subject: Thank you

> Date: Tuesday, October 20, 1998 10:24 AM

>

> From: 91434@...

>

> Liz, thank you for the introduction and the encouragement to go forward

on the

> CJD Watch site and the Many Faces of CJD. It is truly appreciated.

>

> I now have enough to keep me busy, that is for sure!

>

> About the geocities page and that ad that pops down when we access the

Watch

> site, it cannot be taken off the site, I consider it payment in full for

the

> FREE 11 mgs of space! I considered moving the site to aol.com as

Hometown aol

> has recently bestowed on me an additional 10 mgs (already have 10 mgs, 4

mgs

> remaining) however we have a problem here:

>

> Watch is now on many search engines, and in the 19 days it has been

online, we

> have had about 800 visitors, including the UK government, and MANY

> universities, and also the Mayo Clinic. If we move it, we are going to

have

> problems in that they may believe we have dismantled the site, and that

> wouldn't be good for our cause of more research and a possible cure for

the

> horrid disease.

>

> I will try to find a way to get that ad dismantled, but I cannot promise

> anything on that endeavor. But I will try!

>

> Thanks for your input. Wonder if we could entice Oprah to donate her

" old "

> computers to the cause of CJD? They probably throw away better than we

have!

>

> Warm Regards,

> Barbara

>

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

>

April 13, 1999

and Crystal:

I have written to you privately, but I wanted to address your questions about

your dad. I honestly do not believe that once CJD victims are past the

initial stages of confusion, they don't feel much. Of course, it depends on

which areas of the brain are initially affected, but in my dad's case, he

lost his vision quickly and we then realized that he didn't even know that he

couldn't see. My dad's case was a little different than your dad in that my

dad was in the hospital for the last two weeks of his life (he was able to

stay home and could still walk around a little up until the last two weeks),

so once he was in the hospital, he was given Dilantin (for seizures and

shaking), antibiotics for infection (he ran a very high fever), and Morphine

to make sure he was completely comfortable. If I were you, I would look into

hospice for your dad. They should be able to visit him at home and can

possibly administer drugs if necessary.

There may come a time where your mother isn't able to care for him --

especially if he is a big man and she is a small woman. He will need to be

turned and bathed and diapered eventually. She is going to need some help

very soon. I am concerned that she will not be able to keep a " 24 hour

vigil " by herself and you and your daughter have families to care for.

Everyone needs time off to rest. Your mom will only make herself sick if she

tries to do the impossible. My siblings and I took time with Dad to give Mom

a much needed break, but there were 6 of us (including our spouses). Once he

was hospitalized, it became much easier. I don't know if this is an option

for you.

As far as the kids are concerned, my 3 kids were around Dad regularly until

he contracted pnemonia a few days before his death (the nurses asked that I

keep the kids away because of the risk that Dad would pick up colds or other

bugs from the kids). My older two were 14 and 11 and my little one was

almost 2. The older ones were able to understand the situation. I don't

know your situation, but I would try to keep some sense of normalcy for the

kids and grandkids' sakes.

I am so sorry you are going through this. Please keep us posted.

Beverly G. -- Fort Worth, Texas

April 14, 1999

Hello :

Welcome to the greatest bunch of " loving " people you will find. We may

not agree in everything, but I think most are in agreeent that God's

love and our love will see you through every " storm " that you face.

I,too had a similiar problem. We had 7 children and they all watched me

(as tthe wife and their Mom) take care of, wait on, dress him, feed him,

for years and years. My husband was not totally bedfast until near the

last. But I faced many years as his " caregiver " . I loved him with all

my heart and never regreted a minute taking care of him. My children

visited, but never were any of them there to help unless he was

hospitalized.

But then the horrible CJD came into our lives. The last 3 weeks of his

life, the children were there sharing the night shift and some were

there during the day,according to their work schedule.

When he became so serious they were there as much as possible. There

were 4 that were from out of state, so they were only able to be there

for the last. They had previously spent a GOOd weekend with him when he

was able to enjoy it.

As I look back, that last week was not for their Dad, but for their Mom.

They knew what I was feeling physically and mentally. Only the ones who

have spent time with a CJD patient can understand the stress it takes on

our bodies. Thank God my children saw it and came to my rescue. For

that I am eternally grateful.

So, as you can see, us Mom " s don't always cry out for help, we just keep

going until we get sick or someone notices and comes to help. Just

keep your eye on Mom she may just need a couple of hours just for

herself. And if she says " No " , which she probably will, go b what YOU

see abd not by what she says. One day she will thank you for loving

her. I sure did.

Please excuse the length of this letter, it is terribly hard to relay a

message in few words

But I hope in some way sharing my experience will help you.

Praying for you your Dad and Mom and all those who will be effected by

CJD.

In His Love,

Betty

April 14, 1999

Betty,

You couldn't have siad it better for Crystal and . It is true. This is the

greatest group of people I have found. So many times when I have been trying to

put things together, the words and fellings of this group have calmed my fears

or have given me strength. As dad deterorates, My sisters and I will be there

for dad and for mom. They have been married for 47 years. and throughout their

whole life, dad has cared for mom. He worked so she could take care of us. He

paid the bilss and took care of everything. Part of this was because mom has

rheumatoid athritis and can't get around real well. Now even though she is in

pain, she is caring for him. She says he will die at home. She will never put

him in a nursing home. So as the time goes by, we all plan to be home as much as

possible. The grandchildren will be there too. together (family) along with the

members of CJD voice, we will make it through this ordeal and be there for

others when they need it too. And Yes God plays the biggest role. He is there

for all of us. God Bless everyone. Kathy

April 14, 1999

Dear -

I lost my Dad about 10 months ago to CJD and know how hard it is for you

and your family. My Mom went to see my Dad every day he was in the

hospital and she cared for him at home (with some outside help and my aunt

and uncle) for about the last six weeks. Keeping a 24 hr vigil is such a

hard physical thing to do. I hope your mother will let others sit for her

while she can get some rest. She will need all her strength to get through

this. You ask about how long. Unfortunately, there is no pat answer. My

Dad was gone in just six months. Others have only lasted weeks. There

just doesn't seem to be any sort of set time.

You need to be there for your Mother and your Father. Only you can know

how much time and when. I was there the night my Dad passed and I was able

to tell him it was time to go. Somehow, it made me very peaceful, even if

it was difficult!

Write whenever you need to talk or let off steam or whatever. We're always

here.

Shar

May 22, 1999

To Everyone on the List:

Thank you all for the prayers and thoughts, and cards. I heard from people

on the list that I never even knew exsisted! It has been a hell of a week.

I am the type of person who springs into action when there is an emergencey.

Then, I absolutely decompensate for the next few days. Which is where I am

at now. There are some visiting Tibeten monks visiting with the Dalai Lama

in Malibu this week. They are giving healing sessions to people who need

them. I'm going on Tuesday. I asked the coordinator if she needed help with

anything, and she said that I could host a dinner for them at my house on

Saturday. They will all come and bless my house.

Well, I shot out of bed and I'm getting ready for the monks! My husband is

shaking his head about this. I said, " when is the last time we had dinner

with 10 Tibeten monks? " . My sisters are cooking the vegetarian meal, as I

will be recovering from surgery on Wednesday. But the're coming. I don't

know why I am so excited about this, but I need something to look forward to.

Also, many have asked me if there is anything they can do for me. There is.

If you are a woman, please examine your breast every two weeks. Get to know

every bump and fiber and ridge. Self examination is going to save my life.

For the men on the list, please get the test that detects prostate cancer. I

know we don't want to think about one more " disease " , and we won't have to if

we do these simple things.

Thank you guys for everything. Enough of the hyper-sensitivity, and the

spitefulness with each other. It's not amusing. Love, Elaine, Malibu

May 22, 1999