HELP

March 12, 1999

Hi Betty,

My mother had her gallbladder out in the mid 80's. Recently my sister,

brother-in-law and I met with the first hospital my mom went to when we

first noticed her displaying symptoms of forgetfullness, etc., to discuss

the inappropriate care and treatment she received while there. One question

I asked was whether or not they used dura mater when my mom had her

gallbladder out there. We were told that was a long time ago and there was

no way to check.

My mother went to Portugal in the mid 80's, so I often wonder if she

ate beef there....(she ate mostly chicken or fish)...So I will never know.

I do believe she ate whatever is was that caused CJD....this is something I

just feel in my heart... But again, I will never know. There is no closure

to this, THE DEVIL'S DISEASE...

Thank you and God Bless you all.....

Suzanne

help

From: BBWELLS@... (BETTY WELLS)

Good Morning everyone:

Would somene please expain to me what DURA MATER is? MY husband had

" grafts " created for his dialysis access. I understood that if his own

vessels were used it is called a FISTULA. They went in many times and

re-built. Then I kept hearing the word his GRAFT. I wonder if that was

just an error in the word they used since so many had grafts or if he

really ha a GRAFT. And if so...what was tht graft made of???

Thanks for you help and have a blessed day!

Betty

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March 12, 1999

Suzanne,

When you say DURA MATER are you referring to human DM or animal DM???

That is my oncern.

Anoher concer is that my husbands " neat " intake was increased about 1

year before his diagnosis/death. He ate 2 pieces of meat instead of

one, because his PROTEIN level had dropped. And naturaly no protein

level no life.

As you can see...with all the surgeries, blood transfusions, extra

meats, constant dealing with needles, tubing....wewill never know the

exact cause or reason, but I sure would like to shake the trees and look

under all the rocks and try to find some of the answers. And in the

process help someone else

I fear for hs sons. They are precious young men, but they see no reason

to fear. His oldest was there with him through those last horrifing

days and yet when the neurologist began asking questions about my

husbands family, the son could not see why? They were warned about

diabetes (and one became one) they were warned about heart

problems...soooo.....

why ot CJD? Thye truly do not believe it can be trnsmitted or passed on

from one to another.

I have given all my children and his 2 children all of the written info

I gave to the doctors, nurses and medical personel at Conway Hospital.

And I am sure they read it I guess it's normal that the stepmother

doesn't know. I don't ean that in an ugly,way, they are like y own

children and I love them and they love me.

Guess I am trying to read their mind and find out jst what their

reasoning for not fearing this killing DEMON CJD.

Okay now I feel better since I got that off my chest.

Thanks everybody for listening and than you Suzanne. You sure are a

blessing to me.

Betty

March 12, 1999

Suzanne,

When you say DURA MATER are you referring to human DM or animal DM???

That is my oncern.

Anoher concer is that my husbands " neat " intake was increased about 1

year before his diagnosis/death. He ate 2 pieces of meat instead of

one, because his PROTEIN level had dropped. And naturaly no protein

level no life.

As you can see...with all the surgeries, blood transfusions, extra

meats, constant dealing with needles, tubing....wewill never know the

exact cause or reason, but I sure would like to shake the trees and look

under all the rocks and try to find some of the answers. And in the

process help someone else

I fear for hs sons. They are precious young men, but they see no reason

to fear. His oldest was there with him through those last horrifing

days and yet when the neurologist began asking questions about my

husbands family, the son could not see why? They were warned about

diabetes (and one became one) they were warned about heart

problems...soooo.....

why ot CJD? Thye truly do not believe it can be trnsmitted or passed on

from one to another.

I have given all my children and his 2 children all of the written info

I gave to the doctors, nurses and medical personel at Conway Hospital.

And I am sure they read it I guess it's normal that the stepmother

doesn't know. I don't ean that in an ugly,way, they are like y own

children and I love them and they love me.

Guess I am trying to read their mind and find out jst what their

reasoning for not fearing this killing DEMON CJD.

Okay now I feel better since I got that off my chest.

Thanks everybody for listening and than you Suzanne. You sure are a

blessing to me.

Betty

March 12, 1999

Betty,

From what I heard....it's human. Can anyone tell me where they get

this? Does dura mater come from bodies that are organ donors?

Thanks for your help.

Suzanne

Re: help

From: BBWELLS@... (BETTY WELLS)

Suzanne,

When you say DURA MATER are you referring to human DM or animal DM???

That is my oncern.

Anoher concer is that my husbands " neat " intake was increased about 1

year before his diagnosis/death. He ate 2 pieces of meat instead of

one, because his PROTEIN level had dropped. And naturaly no protein

level no life.

As you can see...with all the surgeries, blood transfusions, extra

meats, constant dealing with needles, tubing....wewill never know the

exact cause or reason, but I sure would like to shake the trees and look

under all the rocks and try to find some of the answers. And in the

process help someone else

I fear for hs sons. They are precious young men, but they see no reason

to fear. His oldest was there with him through those last horrifing

days and yet when the neurologist began asking questions about my

husbands family, the son could not see why? They were warned about

diabetes (and one became one) they were warned about heart

problems...soooo.....

why ot CJD? Thye truly do not believe it can be trnsmitted or passed on

from one to another.

I have given all my children and his 2 children all of the written info

I gave to the doctors, nurses and medical personel at Conway Hospital.

And I am sure they read it I guess it's normal that the stepmother

doesn't know. I don't ean that in an ugly,way, they are like y own

children and I love them and they love me.

Guess I am trying to read their mind and find out jst what their

reasoning for not fearing this killing DEMON CJD.

Okay now I feel better since I got that off my chest.

Thanks everybody for listening and than you Suzanne. You sure are a

blessing to me.

Betty

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March 12, 1999

Suzanne,

Don't let that hospital put you off that easily. I asked my surgeon if she

thought that Mass General would still have my mother's surgical records from

1978 and whether they would say if dura mater or dura plasty was used, and she

said she was sure that they would. I think Taunton doesn't want a law suit.

Sheryl

March 24, 1999

Betty,

Call your Congressman's office, explain the situation and ask him if you could

get your husband's records without paying for them. He should have a local

office.............Pat

May 22, 1999

Hi Lois,

Sorry to hear about your trouble with the band. I hope that you are

allright by now.

I never tried to jump and have no garten to walk around, but I already

expanded my chest as much as I could, and breathed deeply, and it

worked.

Wishing you all the best !

Take care,

Marina

May 27, 1999

In a message dated 5/27/99 12:42:00 AM !!!First Boot!!!, RKimb93855@...

writes:

<< Has anyone else had their symptoms get worse with age? If I start thinking

about it I will start getting the spasms. Is this common or am I nuts? Is

this a prequel to Parkinsons?

K >>

Yes, RLS usually worsens with age! Something to look forward to, eh?

Yes, thinking about my RLS seems to focus my " mind " on it; hence,

distractions do help my RLS.....uh oh, back to the mental thing, huh?

NO.....RLS has " nothing " to do with Parkinsons.....separate animals.

IMHO

RAINBOWPED@...

October 18, 1999

Cyndi --

First, welcome and good luck! This is a great group of folks with lots of

ideas and suggestions.

Second, my guess is that " I might barf " feeling will go away as soon as your

body figures out that you're not doing anything dangerous. In the meantime,

you might consider eating less at a sitting (even if you're not really eating

a lot now), AND eating more often. Low carb meals are often more protein

heavy and thus more dense than carb-rich meals. Sometimes, when your body is

used to one way of eating, a sudden change can be a shock.

Hope this helps,

Gail

Chicago

In a message dated 10/18/99 8:59:24 PM Central Daylight Time,

cyndibear@... writes:

> I just started the induction today. I was wondering when the I might barf

> feeling will go away? I get it shorty after I eat.

> Cyndi

>

November 8, 1999

I know how you feel..I lost my husband and I know the pain, I did the same thing

I ate from depression. my husbands birthday is

Nov. 15 (3rd with out him) what I plan on doing is taking along drive and

remembering the good things and funny things he did,

HUGS

Juli

HELP

Please excuse this slightly off topic post. I am in desperate need of some

encouragement. I have been dangerously close to cheating the last few days and

tomorrow will be an extremely hard day for me. It is the 3rd anniversary of the

death of my 25 y/o son. Food has always been my answer to depression. Which is

probably why I have over 75 pounds to lose. To top it all off, my weigh in today

brought me 4 additional pounds!!! I promise I have stayed with my plan and not

cheated. I don't know what it is. Possibly just depression, but that sure

doesn't make me any less depressed. I am trying really hard to stay away from

those carbs, but they are sure calling my name. Anyways, thanks for letting me

get some of this off of my chest.

Threeds

It isn't always enough to be forgiven by others. Sometimes you need

to learn to forgive yourself.

November 8, 1999

Threeds

my sympathy for you loss I'm a depression eater too, as well as a boredom,

happy and any other occassion. Maybe it'll help to have some legal treats on

hand? Or how about doing one of those " break " diets for the day? Best

wishes to you

Sue

November 8, 1999

Threeds.........I'm so sorry for your pain...I wish I could say something to

help you..But I'm at a loss for words..............Judi

November 8, 1999

Threeds,

You have a tough week ahead of you! I can't imagine what you could be going

through!! You have to stay true to your self. I can tell you that you really

want to break the cycle of food being your comfort, You can still eat, just

stick with the free stuff, I know it isn't as exciting, but it is better for

you!! Try sticking with the list a little closer, maybe someone will say

something to help you!! I will be praying for you!! There are times when I

could so easily cheat, but I get online and read the posts and I feel a

better. I hope this helped!!! I wish I could say or do more to help!! let me

know how your doing!!

Hugs

Penny---Ohio

173/156/130

Goal for TG ----- 154

!!!!!!!!Go Dolphins!!!!!!!!!

List Owner---ICQ#51429926

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

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

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

November 8, 1999

In a message dated 11/8/99 7:35:22 PM Pacific Standard Time,

threeds@... writes:

<< I am in desperate need of some encouragement. I >>

When it gets really bad try going to the chat site mentioned to vent somemore

im sure oneof us will be there to listen.

November 8, 1999

In a message dated 11/9/1999 12:13:35 AM Eastern Standard Time,

PRICELIS1@... writes:

<< When it gets really bad try going to the chat site mentioned to vent

somemore

im sure oneof us will be there to listen. >>

Thats a great idea, Just post on the list that you need to chat, If I can't

be there maybe someone can!!

Hugs

Penny---Ohio

173/156/130

Goal for TG ----- 154

!!!!!!!!Go Dolphins!!!!!!!!!

List Owner---ICQ#51429926

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

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

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

November 9, 1999

In a message dated 11/8/99 9:35:24 PM Central Standard Time,

threeds@... writes:

<< I have been dangerously close to cheating the last few days and tomorrow

will be an extremely hard day for me. It is the 3rd anniversary of the death

of my 25 y/o son. >>

Dear Threeds:

My thoughts and prayers are with you today as you

remember your precious son's life and death. No one can know the pain of

losing a child unless they have been there themselves ( I have lost 2 sons).

Food also has been my consolation and refuge. I hope you will find other

ways to console yourself today, for you know tomorrow you will feel horrid

physically by turning to carbs. Call up a good friend, one you can talk to.

I have found that talking has really helped me. My poor best friend has

listened to me telling my stories and feelings time after time, and that has

really helped me.

Take care, and know I am thinking of you.

Grace

206+/188/150

started 9/8/99

18+ pounds gone forever!

November 9, 1999

In a message dated 11/9/1999 8:34:52 AM Eastern Standard Time, Meboz@...

writes:

<< My poor best friend has

listened to me telling my stories and feelings time after time, and that has

really helped me. >>

Grace,

Sorry for your loss too!! You have a great friend!! )

Hugs

Penny---Ohio

173/156/130

Goal for TG ----- 154

!!!!!!!!Go Dolphins!!!!!!!!!

List Owner---ICQ#51429926

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

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

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

November 9, 1999

Threeds --

My deepest condolences on your loss. I think your post wasn't off topic. It

was about you, and about you and food. That close enough for me.

Take care of yourself. If there's anything I can do, scoot a note my way.

I'll keep a good thought for you.

Hugs,

Gail

Chicago

In a message dated 11/8/99 9:35:47 PM Central Standard Time,

threeds@... writes:

> Please excuse this slightly off topic post. I am in desperate need of some

> encouragement. I have been dangerously close to cheating the last few days

> and tomorrow will be an extremely hard day for me. It is the 3rd

anniversary

> of the death of my 25 y/o son. Food has always been my answer to depression.

December 1, 1999

Hello guys this is Tina mom to Alyssa and well we are still having problems.

the vomiting is almost none exisit. but now there are other things going

on. I still can't get her rate up above 45 then she throws up, so I leave it

at 45 the thing is she is not getting enough calories she has no energy, and

she drinks a lot of water over a gallon a day, still can't get the rate up

even with out water, her lips are cracked, and they had to do some work up

stuff on her and her pee pee is so dilutited nothing showed up and her

calsium level is too high and her acid is too high in her blood I still don't

know what that means but the docter is concerned and said this is going to

reguire more testing she is still losing weight not alot but I thought she

had gained but she is at 30 3/4 oz she doesn't even look like the same child.

then medicaid denied home health care so ALyssa is home bound and now what?

Didn't some one talk about this before? I can't remember what was said but

someething about it being law if a child is tube fed there is a number of

hours a month required? Please help I feel scared now. have you guys felt

so scared that you didn't have any control? thanks Tina Mom to Alyssa

December 1, 1999