New Case of 27 Year Old Diagnosed with CJD - Miami, OKLAHOMA

[Guest guest]

Good Morning Annette:

You may want to write to Jay's sister-in-law, . Her email address is

Chedpep@... She lives in Tulsa, OK and is also a member of the CJD Voice

Onelist.

Mel Steiger, in Salt Lake City, UT is working closely with this family so you

may want to write Mel personally and discuss your concerns with him.

Hope this helps you.

Dolly

=====================================

Subj: Re: New Case of 27 Year Old Diagnosed with CJD - Miami,

OKLAHOMA

Date: 3/2/99 7:25:26 AM Eastern Standard Time

From: ralsimp@... (RAL Simpson)

Reply-to: cjdvoice (AT) onelist (DOT) com

To: cjdvoice (AT) onelist (DOT) com

This is too bizarre...................

My brother was from Joplin, 30 miles from Miami, OK. where the 27 yr.

old lives. My brother was only 35, and we too suspect DEER, and or

chemicals he encountered while working at a College. Could this guy

have worked at a college around there, when he drove a fertilizer

truck????? i.e. MSSC???????????????????? Please respond ASAP.

Annette

[Guest guest]

I don't think he ever drove the fertilizer truck to MSSC. I know where that

is. It was usually around Miami.

diana

[Guest guest]

This is too bizarre...................

My brother was from Joplin, 30 miles from Miami, OK. where the 27 yr.

old lives. My brother was only 35, and we too suspect DEER, and or

chemicals he encountered while working at a College. Could this guy

have worked at a college around there, when he drove a fertilizer

truck????? i.e. MSSC???????????????????? Please respond ASAP.

Annette

[Guest guest]

Dolly and Mel.....How fortunate and Dee are to have you both to help

them during this difficult time. When my mother died...we were alone. My

sister and I became members of CJDVoice after her death.....If we only had

more people like you around to help other's when they find out about a loved

one being diagnosed with CJD........ Maybe someday we will......

God Bless you both.......

Suzanne

New Case of 27 Year Old Diagnosed with CJD - Miami,

OKLAHOMA

>From: DBC006@...

>

>For Everyone:

>

> This is in reference to the new CJD case... 27 year old named " Jay " and

his

>wife, , who live in Miami, OKLAHOMA. I want to recap for you what I

have

>learned since I first made contact with (Chedpep) who is 's

sister.

> lives in Tulsa, OK.

>

> I talked with yesterday and she said that her sister, , wanted

to

>talk with me ... so I called yesterday evening.

>

> has no PC so our link with her will be through and Mel

Steiger.

>I told how instrumental Mel has been in the McEwen case and she

agreed

>to talk with Mel. So, I called Mel yesterday evening and he called me back

>and made a call to . We had a three-way conversation going and she

has

>agreed to let Mel help her. I am very glad because I think Mel has the

>knowledge and contacts to help .

>

> I believe that God directed me to ... and I am thankful that I could

>offer my help to her. She is encountering the same type of aggressiveness

and

>Dr. Jekyll/Mr. Hyde personality changes in Jay that I had with JD. She

>explained that one minute Jay would tell her how much he loved her ... and

>then turn around and be hateful to her. I told that I understood because

of

>JD's behavior. She is also having what all of us had ... false hope. She

>asked me to be very frank and open with her about what would happen with

Jay.

>I used discretion and told her very gently what it would be like.

>

> Jay is currently in the hospital but is supposed to be released towards

the

>end of this coming week. She asked about her choices to make and what

would

>possibly happen with him being at home while she worked. I asked her if

there

>were guns in the house ... and boy did that open up a door! She told me

that

>he was an avid hunter all of his life... DEER. She said he even dressed

the

>deer himself. I told her about the similarities in the McEwen case. I

>suggested she remove the guns before he comes back home.

>

> I gave my phone number and told her to call me any time. I also

told

>her that I would stay in touch with her and help her all that I possibly

>could. She has given me her phone number.

>

> With 2 small children involved and her sanity and peace of mind at stake

....

>she most definitely needs our thoughts and prayers. May God be with her

....

>she will certainly need Him.

>

> I am confident that Mel is the answer for her now. He will be working

>closely with her and has already responded to tonight via phone on

her

>questions (see her below email sent to the group today).

>

> I will keep you posted as I make more contact with this family. I asked

> to stand by ... because will most definitely need her.

>

>Dolly

>==================

>Chedpep@... wrote:

>

>> From: Chedpep@...

>>

>> I have the brother-in-law with CJD that is 27yrs.

>>

>> I have some questions. I'm aware there may not be answers.

>>

>> Do the drs. tell the CJD patient they are going to die and what disease

they

>> have?

>>

>> Do they understand they are going to die?

>>

>> Does anyone ever know why a person got CJD (re genetic, sporadic, etc.)?

>>

>> Are there tests they can perform to find out how they got the disease?

>>

>> Has there ever been someone that has gotten over this disease?

>>

>> Can they tell if the disease has gone to other family members that show

no

>> signs of the disease? (would they have to do the protein test and brain

>> biopsy)

>>

>> I'm sure these questions have been answered somewhere! Thanks for your

>help!

>

>

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

>Hello Dolly,

>

> Thank you so much for your letter. I can't wait to call my sister, ,

>and tell her about this group. She needs a lot of support and advice right

>now. I personally need support. I don't know what to tell her to comfort

>her. It was around Christmas when Jay started forgetting little things.

We

>thought big deal. When his boss from work came and talked to , then

we

>knew it was a big deal.

>

> My sister's name is . Her husband is Jay. They live in Miami, OK.

My

>sister doesn't have a computer at home. That's why I was the one that

wrote

>the

>e-mail. They have two boys. Garrett is 6yrs and Zachary is 3yrs.

>

> His symptoms: insomnia, confusion, personality/behavioral changes, memory

>loss, jerks in his sleep, swallowing and eating problems, lost bowel

control.

>

> Jay had a brain biopsy and I know he also had the protein test. He is

still

>at the Jewish Hospital in St. Louis, MO. They told that he

could

>go home soon. A social worker is supposed to talk to my sister. I'm

really

>worried about him coming back to their house. He gets real mad at my

sister

>about silly stuff. I'm sure you know how crazy children act. They can't

be

>expected to be quiet and good all the time.

>

> Thank you so much for listening to me. Thank you so much for writing back

so

>quick.

>

>

>================

>Subj: Your Brother-in-Law

>Date: 2/27/99 11:25:42 PM Eastern Standard Time

>From: DBC006

>To: Chedpep

>

>Hello :

>

> My name is Dolly , one of the three founders of CJD Voice, and I'd

>like to welcome you to our group. We are very sorry to hear the news about

>your sister's husband having CJD. Have you visited our web site? If not,

>here is the

>link: http://members.aol.com/larmstr853/cjdvoice/cjdvoice.htm " >CJD

>Voice

>

> Can you tell me how your brother-in-law's CJD was diagnosed ... by the

14-3-3

>protein test, brain biopsy or how? Here is a link to our CJD Fact Sheet in

>case you are not familiar with the symptoms of CJD.

>http://members.aol.com/larmstr853/cjdvoice/facts.htm " >CJD Fact

Sheet

> After reading this Fact Sheet, can you tell me what symptoms of CJD he

is

>currently having?

>

> Would you like to sign up for our CJD Voice Onelist mailing? If so,

please

>email me and let me know. Then, after I sign you on ... you will receive

>notification. At that point, please write a brief email to our group

members

>using the CJDVoice (AT) onelist (DOT) com and introduce yourself and your interest in

>CJD. The onelist will distribute mail to all group members. If you wish

to

>email someone individually, please use their personal email address.

>

> We would like for you to ask your sister's permission to complete a Member

>Profile on your brother-in-law. Here is the link for that page also.

>http://members.aol.com/larmstr853/cjdvoice/weare.htm " >CJD

>Voice....... Who are we? We are trying to maintain accurate

statistics

>of CJD cases to help correct, what we feel is incorrect statistical data

when

>the incidence rate of CJD is said to be one case in a million.

>

> Can you tell me what city/state your brother-in-law lives in, ? We

may

>have a member close by who can be of help to your sister. Also, if your

>sister would like to talk with me, I would consider it an honor and will

help

>her all that I possibly can. Please email me privately with her phone

number

>at dbc006@... and I

>will call her. I lost my husband to CJD on March 18, 1997 and have a

personal

>commitment in helping other spouses who are losing their mate to CJD.

>

> , please stay in touch with us because CJD Voice will walk with you,

>your sister and brother-in-law through this together. We will be here to

lift

>and support you while you walk down that pathway.

>

> May God bless, lift and support you and your family during this difficult

>time.

>

>Thoughtfully,

>

>Dolly

>==================================

>Subj: CJD

>Date: 2/27/99 10:12:04 PM Eastern Standard Time

>From: Chedpep

>To: LArmstr853, APE826, DBC006

>

>Hi! My sister was told today that her 27yr husband has CJD. I would

really

>like to talk to someone about this disease.

>

>

>

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

>Ta Da! Come see our new web site!

>http://www.onelist.com

>Onelist: A free email community service

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

>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]

The reason I asked, was because my brother worked at MSSC with chemicals

and pesticides, etc .

a