Re: Can someone give me some guidance

[Guest guest]

Hi a,

I am just basing this reply on my Mom who was 70 at the time of the

disease. It seems from the discussions that we have had here that the

younger victims have to go through the stages longer.

Mom was probably four weeks into the symptoms when she was at the stage

is at now. It was very hard getting her to eat anything after two

weeks when she was still at home. Always said everything tasted like

cardboard.Then we hand fed her in the hospital when it got to the point

that she couldn't hold anything,

till we had a feeding tube put in. The best thing that worked for us were

the ensure drinks and mixed them with part milk to make them not so thick.

She could drink from a straw for a while.

She unfortunatly only lasted two and a half weeks after this stage. She

was always able to move her arms and legs but not push herself up. Has he

had the stage where he is very sensitive to touch, light, sound? They need

to keep the noises down and the curtains closed in the room and we usually

just held her hand gently and spoke quietly. This stage lasted at the most

a week but I don't think that long. People think they have to talk loud

because the patient can't respond. One time the phone rang in the room and

she was so startled that she almost threw herself out of the bed. When she

was moved to change bedding or something she would just moan because she

was so sensitive to everything. This happens because the central nervous

system is affected from what I understand.

I hope this helps some.

Robin

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>

> To: CJDVoice (AT) onelist (DOT) com

> Subject: Can someone give me some guidance

> Date: Thursday, November 12, 1998 12:24 PM

>

>

>

> To All:

>

> I received this, this morning and was wondering if someone in the group

can

> help me send this person some help.

> ____________________________________

> has been in hospital for over a month now and is soon to

> be moved to a paliative care facility. michael and his family are

wanting

> as detailed information as they can possibly find as to what the

cronology

> to death will progress like, from state to state

>

> -now needs help to eat (his hands can no longer control

> the use of utensils, the holding of a glass, picking up a phone, etc.).

he

> can't walk. requires help to get from his bed to anywhere. if he leaves

> his room, it is by wheelchair. he can speak two or three word sentences

> (words become mumbles from there on). he sleeps a great deal. he can

get

> quite aggitated. the last few days, he has begun to refuse to eat dinner

> (though he manages breakfast and lunch).

>

> -the doctors give him perhaps 5 months, but neither of his neurologists

> have

> ever treated a CJD patient

> _________________________________

>

> If anyone can send me information to pass on to these people it would be

> greatly appreciated.

>

> Sincerly

> a G.

>

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

>