Introduction

[Guest guest]

My husband too had surgery around the eye . We believe and UCLA think dura

mater was used in the reconstructive surgery.

I have just returned home and my heart is breaking to read of the devistation

of this young family. This disease is the devil it self!! For us there were

such slaps-in-the-face from the medical field

Gloria

[Guest guest]

Margo,

I would suggest that you contact funeral directors now. There is no need to

have a closed casket. If you have a problem, let me know. I have a funeral who

would be happey to help you. He has been very helpful ion New Jersey.

Marie

[Guest guest]

Margo,

I am sorry your father has been diagnosed with CJD. It must be

especially hard knowing what your uncle went through and what is in

store.

I can understand your concern about funeral arrangements because funeral

directors who know enough to be aware of the dangers of CJD are

understandably reluctant to have more contact with the deceased than

necessary. (After my mom's autopsy, we chose cremation.) However,

technically, there is no reason why you would have to have a closed

casket. A brain autopsy is not a disfiguring procedure.

To respond to other people's concerns about possible related illnesses,

I can only say that, before CJD, my mom was a perfectly healthy, active

64-year-old. No thyroid problems, no diabetes, no bowel problems.

Nothing.

Also I have no complaints about the medical care my mom received. True,

her doctors didn't explain much about CJD--we needed to seek detailed

information for ourselves. But the compassionate care she received was

outstanding. I especially noticed the notes her doctor left for nurses

at the nursing home where she spent her last few weeks--notes full of

" please " and " thank you. " Those doctors with people skills probably use

them to advantage in all their relationships--with the patient, with the

patient's family, and with staff.

Elaine

[Guest guest]

Margo,

I am so sorry to hear about your father. It must be a very difficult time for

you and your family. When my mother died in December, we had no problem

making funeral arrangements. We told the funeral director what she had and

advised him to treat her as if she was someone who had died of AIDS. We put

him in touch with the neurologist who performed the brain removal, and

together they must have worked out a protocol, because we were able to have an

open casket. It was obvious that the people who worked on her did not pay as

much attention to detail as they might have if she had died of a heart attack,

but in the end, the fact that she did not look like herself actually made it

easier to bear. I hope that you can find a funeral home that can be sensitive

to your needs and keep themselves safe.

Sheryl

[Guest guest]

Margo, when I helped my father make the funeral arrangements for my mom

he (the funeral director) was very understanding.

We had told Bob (the funeral director) that my mother had GSS (similar to

CJD).

He said that he heard of that disease & felt it was quite common. He said

that he's buried 7 people already w/that disease. (with CJD) He also asked us

to tell family members not to touch her hair. He felt that what she had may

be contagious. Once we get the results of the brain biopsy (end of April)

we'll call Bob. He said that he wanted to know exactly what my mom had. I

didn't touch her hair but I always touched her hands. I found that I was the

only person that " touched " her. To some people I guess that was morbid but

I'm a " touchy-feely " person & I had to touch her.

When my mom was dying I always hugged & kissed her. I was there when she

died.

I also hugged & kissed her AFTER she died. She's my mom & I LOVED HER! &

I MISS HER TOO!

Regards,

e

[Guest guest]

Welcome to the group Joe.....My vibrant, socially active 78 year old mother

died Dec. 10 1998 from CJD. Just 46 days after being diagnosed.......

CJDVoice and it's members have been a blessing and great comfort to my

sister and me. I have learned a great deal from them and each day I

continue to learn more. I don't know where I would be without this web

site.......I know you'll feel the same.

God Bless......

Suzanne

Introduction

>

>

>Hello CJD Group,

>

>My name is Joe Garvey and my father, also Joe Garvey, past away in 1983

>potentially of CJD. He had most of the symptoms of CJD and we went

>through the typical run around of misdiagnosis and Doctors confusion.

>

>Most of the tests were performed at the VA hospital on Long Island, NY.

>My father was a WWII veteran and spent 11 years in the Army. During the

>earlier stages of his disease my family often wondered if it could have

>been caused by the Atomic testing that he participated in endured during

>the early 1950's in the south pacific. He was on Ewok Atoll one of the

>islands that was used for testing atomic weapons.

>

>An autopsy was performed and was considered inconclusive. What I can

>remember was that the doctor noted that if it was CJD it could only have

>been familial and that this can only be proved by waiting to see if

>anyone else in the family starts showing signs of CJD (This by the way

>is a terrifying thought).

>

>I am interested in following you group to see if I can clear up some of

>the mysteries that my family lives with. Particular to see if I can

>find out if there are a higher percentage of CJD victims that served in

>the military through out the 40’s and 50’s

>

>(I am also not sure if everyone in my family should stop donating

>blood.)

>

>Thank You,

>Joe Garvey

>

>

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

>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]

Steve:

Thanks for sharing your mother's symptoms. I certainly hope that it turns out

not to be CJD, but your story sounds exactly like my father's. He was 74 when

he died of CJD after having been ill only 5 weeks. Will she be tested for

nvCJD as well as " sporadic " CJD?

Please keep us posted and let me know if I can do anything to help.

Beverly G.

Texas

[Guest guest]

Steve,

Welcome to the group and for sharing your mother's symptoms with us. I

lost my mom Dec. 10, 98 from CJD. Her symptoms began at the end of October. I

hope and pray your mother does not have CJD.

You did mention something I had completely forgot about. I would drop in to

visit my mom often...many times unannounced, ironically her doors would also be

unlocked. She lived in the city and was very concious about security too. I

would mention this to her and she always had an answer. (She covered it up very

well.) One day she told me she went to bed and left the keys on the door,

another time she said she went to bed and " forgot to lock the house " ... This

was so unlike her. (Each day it seems I think of something else I overlooked.)

Please keep us informed about your mother. CJDVoice was (and is) a great

help to me during a very difficult time and I know you will find comfort here

also.

God Bless.

Suzanne

[Guest guest]

Steve:

My thoughts and prayers are with you and your family. we lost our 74 year

old mother to CJD on December 9, 1998. Your descriptions of the symptoms

sound so similar to our observations and reading them leads me to relive

some of those difficult moments.

I wish you, your mother, and your family peace

Chatel

At 10:54 PM 3/27/99 -0000, you wrote:

>Hi everyone

>

>I have been suscribing to CJDvoice for several weeks but have not

introduced myself. I am sorry for the delay, but I have been very busy recently.

>

>My name is Steve Griffiths and I live in South Wales UK.

>

>The reason I joined this mailing list is because my mother Enid has

recently undergone tests to see if she has CJD. I have not had any results

as yet but after reading through the mail I have recieved, I find her

symptoms are very much like those I have read about.

>

>Please read a brief description of my mothers recent symptoms.

>Until last August Enid who is 70 yrs old was still working at a local

opticians 1 day per week cleaning and generally helping out. Around this

time she moved in with one of my brothers while some renovation work was

being done to her house, this work went on for 3 months and during this time

we (myself, 2 brothers and sister) noticed that Enid was becoming slightly

confused but we thought that it was worry over her house and living in a

different house.

>However we convinced her to give up work and become a lady of lesiure to

which she agreed.

>At the beginning of Dec we had decorated her house, had new carpets laid

and she moved back in. On the first day I noticed she had not locked her

doors, this being very unusual for my mother as she had always been very

security concious. But I later found out she did not know how to turn the

key, this concerned me and I always called in to make sure she was doing

thing herself, but to my dismay she was not only forgetting the basics but

she did not seemed concerned.

>Within a week she started hallucinating during the day, and soon she became

incontinent, by christmas she could not make conversation because she could

not remember anything.

>On the 4th of Jan this year she was admitted to hospital for assesment, but

the docter still cannot diagnose her problem. Fluid from her spine has been

sent for testing to see if she has CJD and we awaiting the results.

>I visited her tonight and her limit of conversation is yes and no answers

to my questions, she laughs at things said to her and I think she

understands everything but cannot answer because her memory is failing her.

At present she is happy and recieves plenty of love from her family.

>

>Thanks for taking time to read this and when I recieve more information I

will write again.

>

>Bye for now

>

>Steve

>

>

>

>

>

>

>

>

>

>

>Hi everyone

>

>I have been suscribing to CJDvoice for several

>weeks but have not introduced myself. I am sorry for the delay, but I have

been

>very busy recently.

>

>My name is Steve Griffiths and I live in South

>Wales UK.

>

>The reason I joined this mailing list is

because

>my mother Enid has recently undergone tests to see if she has CJD. I have not

>had any results as yet but after reading through the mail I have recieved, I

>find her symptoms are very much like those I have read about.

>

>Please read a brief description of my mothers recent

>symptoms.

>Until last August Enid who is 70 yrs old was still

working at

>a local opticians 1 day per week cleaning and generally helping out. Around

this

>time she moved in with one of my brothers while some renovation work was being

>done to her house, this work went on for 3 months and during this time we

>(myself, 2 brothers and sister) noticed that Enid was becoming slightly

confused

>but we thought that it was worry over her house and living in a different

>house.

>However we convinced her to give up work and become a

lady of

>lesiure to which she agreed.

>At the beginning of Dec we had decorated her house, had new

>carpets laid and she moved back in. On the first day I noticed she had not

>locked her doors, this being very unusual for my mother as she had always been

>very security concious. But I later found out she did not know how to turn the

>key, this concerned me and I always called in to make sure she was doing thing

>herself, but to my dismay she was not only forgetting the basics but she

did not

>seemed concerned.

>Within a week she started hallucinating during the day, and

>soon she became incontinent, by christmas she could not make conversation

>because she could not remember anything.

>On the 4th of Jan this year she was admitted to hospital for

>assesment, but the docter still cannot diagnose her problem. Fluid from her

>spine has been sent for testing to see if she has CJD and we awaiting the

>results.

>I visited her tonight and her limit of conversation is

yes and

>no answers to my questions, she laughs at things said to her and I think she

>understands everything but cannot answer because her memory is failing her. At

>present she is happy and recieves plenty of love from her family.

>

>Thanks for taking time to read this and when I recieve more

>information I will write again.

>

>Bye for now

>

>Steve

>

>

>

[Guest guest]

I can't help but wonder about GUMMY BEARS, and gelatin. I Love those

things!!!!!!! Unfortunately, they contain gelatin too. Any

comments????

a

[Guest guest]

Please no! I eat them quite often also! I have a stash of them at my desk

for when I get that sweet tooth. I pop a couple in & that will satisfy my

sweet tooth.

I know that some things may sound silly like the stories regarding gelatin,

altoids,

beef etc. but.....when you have a chance of inheriting this disease (as I do)

& consuming these products, I think you hold an even greater chance of

getting this disease (or getting it quicker) - It's all too scary & it's all

a mystery - but......

the more we know, the better off we are!!

e

[Guest guest]

Hi ,

Well, this is a couple of days late, but welcome to the group! Look forward

to hearing more from you in the future. We may seem a little wacky at times,

but hey, that's what makes us special. And I'm sure you'll find a wealth

of information here, just like I have. Again, welcome.

Kristy, 43, Fountain Hills, AZ

[Guest guest]

Dear Cindy

Glad you found us here at the CJDVoice. You are welcome as family. We all

have been through what you have so recently endured. You'll find a

kindredship with us.

Shar

[Guest guest]

Thank you.

Cindy

Re: Introduction

>

>

>Dear Cindy

>

>Glad you found us here at the CJDVoice. You are welcome as family. We all

>have been through what you have so recently endured. You'll find a

>kindredship with us.

>

>Shar

>

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

>ONElist: Where Star Wars fans unite!

>http://www.onelist.com

>Find your Star Wars list today!

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

>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]

Cindy, welcome to CJDVoice. This is a wonderful supportive group. You will

find this group very informative. I've learned alot. My mom died of GSS

(similar to CJD) on

Jan. 23, 1999. She also had personality changes, hallucinations, & other

awful, dreadful symptoms.

Together we can make a difference & educate the public on this dreadful

disease.

Take care & have a nice day,

e

[Guest guest]

:

I must say that was one wonderfully written introduction. Bummer about

the computer, hope you've gotten it taken care of and as new as it was I

should think it didn't cost you anything for repairs.

Your story about your dad really hit home with me. I lost my Dad on May

6, 1996, he was only 57. Dad lived in West Virginia until he joined the

Army after high school. He was a hard working honest man that was proud of

what he did and what he had because he earned it. When I visited Dad in the

hospital he would grab the side of his head and tell me that something was

wrong " in there " . He was right, we just didn't know what it was at the

time. Dad fought for 18 months with definate symptoms of CJD. He loved

Dale Earnhardt and watched every race there was on TV. Once he was

watching a race while in the hospital and it was like he really thought he

was in the race himself. He kept telling me that they shouldn't have made

him race today because he just wasn't himself. Needless to say, the

dementia was effecting him by then. He was too young to lose him like we

did. My children will never get to know what a kind and proud man he was and

I will miss him deeply forever. I truly believe in my heart that someday,

somehow we wil get the answers we are looking for.

To find out information about the chat room, conference, message boards,

guest books, memorial calendars etc.... you can go to the

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

homepage. If you have any problems please email me at

LArmstr853@....

take care and welcome to CJD Voice.

Liz

[Guest guest]

, thanks for sharing your story. It seems,(like my mother) that alot of

your loved ones were healthy, vibrant & independent people before this

disease crippled them physically & mentally.

All of our stories are very similar. We all share a common bond. I pray for

the day that they will find a cure for this crippling disease. I wouldn't

want my worst enemy to go through what we went through. It's been 4 months

since my mother passed away & I still yearn for her love, acceptance,

friendship & warmth. It's not fair!

I want my mother back. I'm 32 yrs. old & can't even imagine how my 15 yr.

old & 12 yr. old brother & sister must feel. They (like myself) can never

hug or kiss my mother again. Tell her what a wonderful mother she was.

Laugh with her. Argue with her. She was so wonderful.

Does God know the pain that we're feeling? Does he care? How much longer

can we endure this? I miss her so deeply. She was a beautiful woman. I

pray for her.

What else can we do?

Well, take care & good night,

e

[Guest guest]

Hello all,

my name is Tonya and I am 34 yrs old wife and mother of 3. I have been an

Atkid since 12/14/98. To date I have lost 50 lbs. 55 lbs on a good week. I

really do love this way of life, but I havent been 100% faithful for the last

3 months. Good news is I havent really gained from these little

indiscretions, but I havent lost much either. I joined this list for a fresh

perspective and some active support. I am on a few other lists that are

supportive, but stray from the topic quite frequently. I am not very active

on those lists and mostly lurk. I do realize however, that the more active

you are the better you do on this way of life. I hope to be an active

participant on this list. Thank you for allowing me to join and I look

forward to conversing with you all.

Tonya

275/225/140

[Guest guest]

Tonya,

Welccome to the list!! This is a very active list and we all like to share

our highs and lows. Good Luck and let us know how your doing!!

Hugs

Penny---Ohio

173/158/130

Goal for Oct 31st-----150

http://members.xoom.com/Shadcat708/LC.html " >My Low carb links site

---http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html " >My Home

page--- http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

Welcome Tonya!

Sounds like you've done great! Everyone is so supportive here!

Cathy

262/252/150

248 by Oct 31

TMT33@... wrote:

> From: TMT33@...

>

> Hello all,

> my name is Tonya and I am 34 yrs old wife and mother of 3. I have been an

> Atkid since 12/14/98. To date I have lost 50 lbs. 55 lbs on a good week. I

> really do love this way of life, but I havent been 100% faithful for the last

> 3 months. Good news is I havent really gained from these little

> indiscretions, but I havent lost much either. I joined this list for a fresh

> perspective and some active support. I am on a few other lists that are

> supportive, but stray from the topic quite frequently. I am not very active

> on those lists and mostly lurk. I do realize however, that the more active

> you are the better you do on this way of life. I hope to be an active

> participant on this list. Thank you for allowing me to join and I look

> forward to conversing with you all.

>

> Tonya

> 275/225/140

>

> > Big and Beutiful is a state of mind, Never let anyone tell you different.

[Guest guest]

In a message dated 10/9/99 12:11:31 AM Eastern Daylight Time, TMT33@...

writes:

<<

Hello all,

my name is Tonya and I am 34 yrs old wife and mother of 3. I have been an

Atkid since 12/14/98. To date I have lost 50 lbs. >>

Hello and welcome to the list Tonya, congrats on your weight loss!

[Guest guest]

Alyce Ann,

Welcome to the list!!! You've come to the right place!

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

List Moderator

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

Hi Alyceann welcome to the list where in PA are you

I live in Wilmington DE.

--- alyceann45 alyceann45@...> wrote:

> Hi

> My name is AlyceAnn and I live in Pa with my 15 yr

> old son. I have 2

=====

Sue List Manager 310/260.5/180 255 by 10/31

Wilmington Delaware

Low carb link with info and recipes.http://members.xoom.com/Shadcat708/LC.html

[Guest guest]

,

WElcome to the list!!

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

List Moderator

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

In a message dated 10/12/99 12:31:50 AM Eastern Daylight Time,

alyceann45@... writes:

<< My name is AlyceAnn >>

Hello and welcome to the list AliceAnn!! You can do it this time!!!!!!!!!!!