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

[Guest guest]

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.