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Dear Sheryl

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First of all I would like to tell you how sorry I feel for you and your

family.

My husband died of CJD almost 3 years ago - we live in RI.

My husband had CJD for 5 years, he specifically said that he did not want a

feeding tube. His eating habits went from regular to just Ensure until he

could not swallow anything an that was only in the last week of his life.

As for the fever, in my experience with my husband, it is completely normal

and part of the process. I spent many hours with my husband putting cool

towels all over his body to bring down his temperature, always thinking that

each bout with high temps (pneumonia) was going to be the cause of his

demise. But he always came out of them and in the end it was not the

ultimate cause of his death. But that said, I also know that there are not

two cases that seem to be alike.

I think that what ever you and your family decide to do is the best way. Do

not feel as if there is a manual to follow just follow your heart. God

Bless.

Jackie Laplante

ext.309

duration

From: STrai6098@...

My mother was recently diagnosed with CJD after a rapid deterioration

taking

place over the last 3 -4 weeks. She is presently in a wonderful nursing

home

south of Boston, MA. My father authorized a feeding tube before she left

the

hospital for the home, and at present, this is the only way that she can

receive nourishment since she is no longer able to swallow. She is 67 years

old, and before the onset of CJD was a healthy woman. As of today she is

bedridden, incontinent, and unable to eat or drink, or communicate. Her

eyes,

when open, have a dead look to them. She twitches and jerks and has been

running a temperature of 100 - 102 since last Thursday. I was wondering if

anyone knows if the fever is a symptom of CJD, since one of the nurses

suggested that what's left of her brain may no longer be able to control

body

temperature. A month ago that would have sounded bizarre to me, but now

nothing seems too bizarre or horrific. Also, could anyone out there tell us

how much time they think my mother has to live based on their experience?

Has

anyone else done the feeding tube route? Thank you in advance for any help

you can give.

Sheryl

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