Re DEE at CJD Voice Discussion Group

March 1, 1999

Hi,

Thank you all for your support and information. My brother-in-law is the 27yr

with CJD. Dolly and Mel called my sister, , last night. I hope she can

get thru this horrible situation. They live in Miami, OK, USA.

DEE(nickname for )

March 1, 1999

Hi,

Thank you all for your support and information. My brother-in-law is the 27yr

with CJD. Dolly and Mel called my sister, , last night. I hope she can

get thru this horrible situation. They live in Miami, OK, USA.

DEE(nickname for )

March 1, 1999

Oh no. Another Florida case. Is there any connection to the Winn Dixie where

the butcher died two years ago? We have a cluster in Florida in a short

period of time. This one is definitely not due to age. When will the

authorities wake up??

My father in law has begun the " fight " to get my mother in law's death

certificate corrected so that it will read CJD and not cardio-pulmonary

disease. The doctor at the nursing home had seen her twice, both times picked

her wrist up, dropped it and walked out. He, of course, was the one with the

" knowledge " of her condition and signed the death certificate. He, of course,

billed us (and Medicare) $120 for each " visit " . He never even returned one of

my father in laws calls nor made himself available to him while at the nursing

home. He never talked to the neurologist nor consulted with anyone on the

diagnosis. Anyway, it is very important to us that we get the cause changed

to help document the prevalence of CJD.

I will email Dee privately to let her know what we found out about Florida,

Medicaid assistance, etc. Sounds like they might need a place to start. No

sense boring everyone.

Vicki

March 1, 1999

Dee, I may have spoken to your sister " J " last night, please email me privately

and let me know where you live - state. The facts are very similar. . If it

is the same person,

we had a long tolk, and yes she will need a lot of help. Mel in SLC

Lynette Dumble wrote:

>

> At 06:59 PM 2/28/99 -0600, you wrote:

> >

> > From: Terry/MADSON: --- check this out, it's on the

> > Dear Terry,

>

> Any clue whether Dee is from US, UK or elsewhere? Sounds perhaps US, as

> national health would pick up the bills in the UK!

> Cheers etc., Lynette.

> >

> >>

> >> CHEDPEP@...>DEE

> >> 27YR with CJD

> >> Sat Feb 27 23:03:41 1999

> >> Hi. My sister's husband was just diagnosed today with CJD. He started

> having

> >> memory loss around Nov-Dec. 1998. He is only 27yrs. He worked at a Co-Op in

> >> a small town. He drove a fertilizer truck. He also lived on a farm. The

> >> doctor's said she could bring him home this week. He doesn't remember his

> >> wife at times. He doesn't have control of his bowels. He doesn't feed

> >> himself, most of the time. They have two small children. They won't be able

> >> to pay the hospital bills. So you know the can't afford much quality care.

> >> Please help, we need all the support we can get.

> >>

> >> Dee

> >

>

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LArmstr853@..., Pat at Ape826@..., Dolly at DBC006@... or Beverly G

at Bevalso@....

March 1, 1999

Vicki:

This case is not in FLORIDA... it is in Oklahoma. " DEE " is ... the

sister to . 's husband, Jay, has CJD and is 27 years old.

I have talked with and also . I asked Mel Steiger to work with

and help her. He has agreed to do so.

I am writing a group email tonight that will explain this case in more

detail.

Dolly

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

Subj: Re: Re " DEE " at CJD Voice Discussion Group

Date: 3/1/99 4:36:09 PM Eastern Standard Time

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