Re: Another Loved One Lost - Jim Miles

January 10, 1999

Hello, to everyone. I'm new at this site.......sorry to say. My beautiful wife

Helen has the dreaded " prion " . After 4 months of intense tests it was finally

diagnosed by Dr. Gibbs at the NIH. Not that it would have mattered, but when

she had her first tap in Oct of last year, there was and elevated protien

........but the neurologist could not figure out why..........we then went to

the Strong Mem. Hospital in Rochester, N.Y. Dr. Counihan suspected CJ as I

overheard a conversation by him and another Dr.. At that time I never heard of

CJ . I came home and went on the net to search for the letters........CJ.I

didn't believe what I was looking at.....it couldn't be that she had CJ. One

in a million......no way..she must have some other problem. We had to return

to Rochester on the 23 of November for an EEG and another tap to be sent to

the NIH.....on Dec 8 we were told the it was positive..... and prepare

yourselves for the outcome.

We were also told at that time that she a varient of CJD because it has

attacked her cerebellum.......This was much more rare than the other types.

Perhaps one in 2-3 million.Her thinking and memory is just as sharp as it was

before the CJD set in. Just during the past few days I have noticed a laps in

memory. Her motor skills have gone completely......We talk to each other and

she understands but cannot get the words out. She knows what she would like to

say but cannot. One phrase that we both know and she still says fairly clearly

is " I love you " . I guess that is all that matters at this point . The deep

love that you both share and understand until the very end.

I want to thank all of you for the notes that I received over the past few

days. I also want to thank that wonderful person by the name of

" Dolly " ........you all know who she is. How could you not............without

her ...I don't know where I would be at this point. She is truly a GOD send to

me and has guided me thru one of the most difficult times in my entire life.

THANK YOU DOLLY

Bill Urdanick

January 11, 1999

You both are in my prayers.

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