conference

[Guest guest]

Hi e,

Mom was 70 when she passed away. It took a good three months to get the

results of the autopsy. It told us what parts of her brain were affected,

what varient she had. The Heidenhain Varient, and much technical information.

Robin

[Guest guest]

e -

I know you addressed your question to Robin, but thought you might like to

hear my saga, too. When Dad died in June, he was taken to Denver for an

isolated autopsy. We waited patiently for months with no word. I finally

called the University and after being sent on several wild-goose transfers,

managed to speak with someone who knew something. I got the original

results in January, only to find that some frozen blocks had been sent to

Case Western Reserve in Cleveland. That was much easier to trace, as I

knew the Doctor's name. This request only took two weeks. So seven months

later we have all the results. But it was worth it.

Shar

----------

> From: Kristi118@...

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

> Subject: Re: Conference

> Date: Monday, February 01, 1999 9:36 PM

>

> From: Kristi118@...

>

> Robin, we did an autopsy on my mom. How old was your mom & how long did

it

> take to get the results? Was it enlightning? Did you find out any new

info?

> e

>

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

>

[Guest guest]

Thanks Robin.

e

[Guest guest]

thanks Shar.

[Guest guest]

Since I am caring for my husband, at home,not in a nursing home, at home, night

and day, I cannot make plans for the next hour, much less a conference in

Indiana. I am so grateful for the ones who have planned the conference and I

will do whatever I can to help, but I cannot commit to attending as of now. In

the future, I plan to make it a point to attend at whatever means it takes.

Everyone who can, certainly needs to support the conference and I know it is

through things such as the conference that we will be able to put this horrible

disease to the forefront. I have written senators, given accounts in the local

papers of the disease, etc. I am doing what I can from my home, as I care for my

husband at this time. That is all I can do. Carolyn W

[Guest guest]

Dear Carolyn,

Sorry if I got carried away. I certainly understand that all your energy must

go to helping your husband. I just get frustrated some times when I hear an

oaf like Schonberger dismiss this disease out of hand and then see little real

response on our end. I understand that everyone in this group has a life

outside of CJD. Maybe it's because my mother's death was so recent that I get

so angry. It's like an open wound still and being angry keeps me from

retreating into a cave of denial like my sister Sue has done. Maybe I'm just

trying to keep a little bit of my mother alive by what I am doing. I don't

know...

Sheryl

[Guest guest]

Sheryl,

I hear ya! My mom died the day before your mom. I do what I can from

home. I have written petition letters, did 3 newspaper interviews, talk till

I am blue in the face and tried making a difference by running around

getting ribbons started for us to wear...so I could say: " Look....these

ribbons are for CJD victims... my mom died from this only 3 months

ago....now somebody do something!!!

I use to talk to my mother 3 & 4 times a day on the phone, I would do

anything to be able to call her one more time...I miss her so much. It is

still fresh for me too.

I was hospitialized Oct 13 (my mom called 911 - you know the story).

I returned to my home Oct 21. My mom was staying with me to help be

recuperate when I noticed something wrong with her. She was dead by Dec.

10, 98. My sister and I cared for her 24 hrs. a day at her home until she

died.

I returned to work Jan 4, 99. From Oct 13 to Jan 4 all my PTO

(Personal Time Off), vacation...and the majority of sick time were used so I

could care for my mother... I want to go to the conference, but for me to

go...that means I would be off without pay.....I am still trying to figure

out a way to get there. So cross your fingers...

Suzanne

Message-----

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

Date: Thursday, March 11, 1999 9:46 AM

Subject: Re: Conference

>From: STrai6098@...

>

>Dear Carolyn,

>

>Sorry if I got carried away. I certainly understand that all your energy

must

>go to helping your husband. I just get frustrated some times when I hear

an

>oaf like Schonberger dismiss this disease out of hand and then see little

real

>response on our end. I understand that everyone in this group has a life

>outside of CJD. Maybe it's because my mother's death was so recent that I

get

>so angry. It's like an open wound still and being angry keeps me from

>retreating into a cave of denial like my sister Sue has done. Maybe I'm

just

>trying to keep a little bit of my mother alive by what I am doing. I don't

>know...

>

>Sheryl

>

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

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Beverly G at Bevalso@....

>

[Guest guest]

What does everyone think about inviting him. It's fine with me and I would be

glad to write the letter. I remember when Dorothy sent that info through. If

you have the address please send it along to me.

Robin

[Guest guest]

Hello Dorothy, I would like to voice my opinion on Dr. Belay (you know I don't

like to voice my opinion, ha ha).........

Dr. Belay (CDC) is as big an ass as Schoenberger...doesn't give a damn about

CJD...he is on the nvCJD bandwagon........He will just mock Schoenberger,

" IT'S NOT HERE " ........... " DON'T WORRY " .......... " ONE IN A MILLION " ///

Terry/MADSON

Dorothy Kraemer wrote:

>

>

> Earlier I sent a post about the new head of CDC Dr. P. Koplan MD.

> MPH. The article had some statements he made that sounded as if he had an

> open mind to public participation " Our goal at CDC is to take public health

> action and you can't unless you have some facts to back it up. "

>

> What about inviting him to the conference? Since Dr. Belay declined and Dr.

> Schoenberger has such a bad history with some of us, perhaps we can make a

> case with THEIR BOSS.

>

> Dorothy

>

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

> If you like orange and blue, then you will love our new web site!

> http://www.onelist.com

> Onelist: ing connections and information exchange

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

> 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]

Robin - Maybe the new guy will at least listen to us before forming an

opinion.

Shar

[Guest guest]

I don't think we should invite anyone from the CDC to the conference until we

are assured that a decent amount of people will be there. Otherwise we will

just embarass ourselves and prove them right.

Sheryl

[Guest guest]

Kathy, I didn't notice any bruises on my mom. However, she did bruise easily

when blood was taken. Her whole arm would bruise after they withdrew blood.

It would be like this for a couple of days. Of course it made my dad sick.

Several times we begged him for the o.k. to withdraw blood. She went through

so many tests.

He was sick of it & he knew these tests were pointless. She was thin & weak

to begin with. They certainly didn't need to take any blood out of her. Oh,

the hell he went through. It must ache to go to an empty bed every night. He

misses her so.

We all do.

Well, take care.

e

[Guest guest]

,

I'm so glad that you spoke with Dr. Ghetti, he is great to talk with and

should be very helpful. Send me your address privately XOXOBB@... and I

will send you a conference brochure or go to the homepage

http://members.aol.com/larm853/cjdvoice/cjdvoice.htm....look on the left side

and click on the conference. You can print out that information.

The way that your Dad is acting is very familiar. The reason that your Dad is

acting childlike is because he is forgetting how to do things. It is very

mind boggling when you are going through it. In the morning they can do

something and by afternoon they can't do it anymore. I watched my Mom lose the

ability to write her name right before my eyes. She wrote her full name, was

going to practice it again, tried four more times. By the fourth time it was

a scratch on the paper and she never wrote again. This was all in a matter of

10 minutes. If it is cjd yes, it will get harder. Give him lots and lots of

hugs and enjoy what you can. We are here to give you help. Keep us updated.

Robin

[Guest guest]

Kathy,

If the 14-3-3 test comes back from the lab in California and is negative, tell

the doctor that it needs to be sent to Dr. Gibb at the NIH. My mother's

spinal fluid was initially sent to CA and came back negative. A week later,

her new hospital sent fluid to the NIH and it came back positive. This was

later confirmed by autopsy.

A month after my mother's death, another woman who had gone to the same

dentist as my mother was admitted to the hospital my mother was first admitted

to. This woman had the EXACT SAME SYMPTOMS as my mother. When they sent her

fluid to CA, it came back negative, and the doctors diagnosed her as having

something other than CJD. B...S...! She died in the same nursing home that

my mother did, and her disease followed the same course. When I later talked

to Dr. Gibbs, he said that this kind of situation with the lab in CA had

happened several times before and he wasn't sure why. I think they may be

screwing up the test somehow.

Sheryl

[Guest guest]

Robin,

Yes, I also saw my mother loose the ability to write before my eyes.

I remember the doctor, in Boston, drawing a circle and asking her to make a

clock by writing the numbers 1 - 12. All her numbers were written very tiny

in the upper right corner. She tried so hard to do it two other times, and

each time she would look at it and say: " that's not right! " but she

couldn't do it...no matter how hard she tried. I could see how much this

bothered her. That was also the last time she wrote her name...this all

took place in a matter of minutes.

It was VERY PAINFUL to watch my mother go through this.... Not a

minute goes by I don't think of her....it doesn't get easier....

Suzanne

Re: Conference

>From: XOXOBB@...

>

>,

>

>I'm so glad that you spoke with Dr. Ghetti, he is great to talk with and

>should be very helpful. Send me your address privately XOXOBB@... and

I

>will send you a conference brochure or go to the homepage

>http://members.aol.com/larm853/cjdvoice/cjdvoice.htm....look on the left

side

>and click on the conference. You can print out that information.

>

>The way that your Dad is acting is very familiar. The reason that your Dad

is

>acting childlike is because he is forgetting how to do things. It is very

>mind boggling when you are going through it. In the morning they can do

>something and by afternoon they can't do it anymore. I watched my Mom lose

the

>ability to write her name right before my eyes. She wrote her full name,

was

>going to practice it again, tried four more times. By the fourth time it

was

>a scratch on the paper and she never wrote again. This was all in a matter

of

>10 minutes. If it is cjd yes, it will get harder. Give him lots and lots

of

>hugs and enjoy what you can. We are here to give you help. Keep us

updated.

>

>Robin

>

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

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>Come visit our new web site and explore a new interest

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>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]

Suzanne, they gave that test to my mom too. She just wrote the # 12. The

rest of the clock was blank. She was looking around the room for a clock. I

asked her one day, " mom, why can't you remember? What are you thinking of

now? She said nothing. she said her mind was " blank " Suzanne, you are

right about the memory loss taking place in a matter of minutes. At the

beginning the Dr. ruled out " Alzheimers " because the memory loss went so damn

fast. Your also right when you say it doesn't get easier. It doesn't. I'm

constantly thinking of her. EVERY DAY. I actually envy Annette for dying.

She's now up in Heaven with her father.

This is a cruel world we live in & I never felt as much love then when I got

it from my mom. The lonliness & emptiness is unbearable. The only thing that

keeps my sanity is work. I like my job & the people that I work with. When

I'm not at work I feel really lonely (Late Night is always the worst) I hope

that Annette gives the Lord

the message about CJD & tells him to find a cure - FAST!

Well, Bye for now.

Take Care,

e

[Guest guest]

Frances,

I think we should try to get the word out anyway we can. I will get a basic

letter written that I can use for lynn, Tipper and Dick and then

just fit it to each person. I think my plate is pretty full for the week I

shouldn't be bored!

Robin

[Guest guest]

Go get em a!!! Good luck and let us know how it goes!!

Thanks for keeping us informed

Liz

[Guest guest]

> > Ooops, I was thinking along the lines of maybe October????

>

> Whatever suits most people, I guess. October probably won't work

for me, I'm

> planning to be away then, but maybe it's good for the majority.

Should there

> perhaps be another poll giving a couple of alternative dates?

>

>

Hi ,

We had a big discussion about the bash on Saturday at our meeting and

agreed that we are goiong to have to give a lot of notice to

speakers. The general concensus of those with jobs to do is that we

hold it in March next year. That way it gives people a lot of time

to arrange time off or save up.

Hopefully we can get this one off the ground. It wpould be so good

to have a heap of WLS people in one place, we are all, after all,

aiming for the same thing.

Have a good week,

Cath

[Guest guest]

Cath

Would you believe I have a yearly weekend away with friends already

booked for that weekend. We do it every year. Never mind, hopefully

it will be a great success and will be repeated at some stage.

Angie

[Guest guest]

Thanks Mark.

I am getting one for her anyway.

If she doesn't want it, I am sure there will be someone who will.

Debbi

Re: conference

Barb's immediately going back to school after vacation, I'm quite sure.

[Guest guest]

Thanks Mark.

I am getting one for her anyway.

If she doesn't want it, I am sure there will be someone who will.

Debbi

Re: conference

Barb's immediately going back to school after vacation, I'm quite sure.

[Guest guest]

Thanks Mark.

I am getting one for her anyway.

If she doesn't want it, I am sure there will be someone who will.

Debbi

Re: conference

Barb's immediately going back to school after vacation, I'm quite sure.

[Guest guest]

> Barb's immediately going back to school after vacation, I'm quite sure.

Yup, yup! Actually, I skipped the last two weeks of class for this trip, so

I still have time off from school until July 6. But then it's back to the

books. In fact, I read the first two chapters of my accounting book for

next quarter on the plane.

-Barb

[Guest guest]

> Barb's immediately going back to school after vacation, I'm quite sure.

Yup, yup! Actually, I skipped the last two weeks of class for this trip, so

I still have time off from school until July 6. But then it's back to the

books. In fact, I read the first two chapters of my accounting book for

next quarter on the plane.

-Barb