Fw: Your message from the chat room

[Guest guest]

Hi all,

Remember when I asked if anyone had written to the message from Ron in the

chat room? I got a reply from him this morning and I want to share it with

you. It will sound familar to all of us.

Robin

----------

>

> To: robtom@...

> Subject: Re: Your message from the chat room

> Date: Saturday, October 24, 1998 1:02 AM

>

> At 11:15 AM 10/22/98 -0500, you wrote:

> >Hi Ron,

> >

> >I am sorry I didn't get back to you right away, I am Robin and I take

care

> >of the Chat

> >Room on CJD Voice.

> >

> >I am sorry about your father, how long has he had the symptoms? Have

you

> >had problems getting a diagnosis?

>

> Dear Robin,

>

> Thank you for responding to my post on the chat room.

>

> We first started really noticing symptoms the last of april this year.

It

> took several Dr's and Several trips to two seperate Hospitals before we

> received a diagnosis.

>

> We were fearful about possible prostate cancer last year when tests kept

> comming back that were suspicious. It turns out he did not have any

cancer.

>

> He was very irritated at times which was very unusual for him. He was

very

> tense and nervous about driving the car and being away from home.

>

> I knew he was acting a little strange but I just supposed it was the

> preasure he was under worring about possible cancer.

>

> My mother was in a kind of a denial about his symptoms at first and kept

> making excuses for him until the end of April when it became to much for

her.

>

> She brought my father to my sisters house in Arkansas from Sikeston

> Missouri to see his DR. He stopped talking much because he was unable to

> put together sentences. I think it was because he couldn't come up with

> the right words.

>

> The first time he went to the Dr. He answered most of the questions very

> well and was sent home with a Prozak prescription. j We were told it was

> stress and said to call if there were any changes.

>

> He got worse. He was sent to Memphis and had extensive blood tests. One

> of the tests came back positive for lime disease and he was placed on a

21

> day round of antibiotics which were told would take care of things.

>

> Every day there were noticable changes as dad grew worse. From one week

to

> the next he forgopt who the president was. the next week he thought I was

> his father. A few days later he said he knew I was somebody close but

had

> no idea who I was. a few days later he stopped swollowing his food and

> would just hold it in his mouth for hours. He forgot how to walk and he

> lost controle of his bodily functions.

>

> I never knew if he was paranoid until he lost most of his controle. He

was

> easily frightened by sudden movements by the nurses or others around him.

> At one point tried to keep hiding in his pillow on the hospital bed. Of

> late he has stopped making most of his expressions.

>

> Sometimes he still seems to look angry or like he is trying to figure

> something out. He no longer really looks at anyone or anything and can

no

> longer grasp with his hands, turn over, or move his head from side to

side.

> He is like a tiny infant.

>

> The Dr's have been able to get most all of his shaking under controle by

> using certain medications.

>

> My mother has lost Hospice care for him because when he developed

Pnewmonia

> she took him to the Hospital. They told her if she took him to the

hospital

> it would be extending the life of a terminal patient and that was against

> their rules.

>

> If he lives long enough, My mother will celebrate their 50th. wedding

> anniversary in December.

>

> I am sorry I wrote so long a letter but it was nice talking to someone,

> even in an E-mail.

>

> Thanks.

>

>

> Ron Lawson

>

> Check out my Web pages: http://www.home.aeneas.net/~rlawson/>

> if that doesn't work try: http://home.aeneas.net/~rlawson/>

>

> " If you keep doing what your doing, you'll keep getting what your

getting "

> (unknown)

>

> " Death and life are in the power of the tongue " (The Bible)