Conference

March 17, 1999

Robin, That is great that Dr. Ghetti is helping with the conference.

Thank you for putting me intouch with Francine, His coordinator. I want

you to know I left her a voice mail, she called and left me a vioce

message, cause I had left my desk (this was within 15 minutes) then

within an hour Dr. Ghetti was calling my office. He was very kind and

VERY interested in my dad's case. He ask many questions, which I need to

find answers for. But I plan to send blood and CSF to him on April 7

when Dad comes back to to have his spinal tap done for 14-3-3.

Thanks again for sending me his name.

I have family in Indianopolis, so if dad is still ok by then I would

like to come to atleast hear the speakers and as many questions. I am

willing to pay the $22.00 or more if need be. I plan to ask my sisters

if they would like to come too. What a wonderful way to meet those who

are supporting my emotional needs.

Breif update on my dad. I spoke with Dr. Duntley his neurologist. He has

agreed to tell mom and dad he thinks dad has a fatal brain disease. So

hospice can come in, but he is still reluctant to say CJD to them. He

wants " proof " But at least he is being honest with me. Dad still is

having difficulty swallowing. His new symptom over the past week is he

is acting very child like. He is having to be told what to do and how to

do it. Mom says it is strange to watch. He has develope bruises on the

back of his hands. It may be a side effect of Depakote, Has anyone else

ever seen small bruising on their loved ones. His memoryis still poor,

and the seizures are still there too. I pray come April 7 we'll finally

get a positive sign. We are repeating the MRI and EEG on that day too.

It will take us about 10 days I am told to get the results to the

14-3-3. It has to go to CA. Right now we still have him with us. but I

know in time it is going to get hard for all of us. I want to thank

everyone that has contacted me and spoken to me. Your kind words, advice

and support will always be welcome and remembered.

--

God Bless You

Kathy

ICQ 2551093

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