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My name is carolyn-marie. My husband has cjd. I am caring for him at home. He

is 57 and was in near perfect health until July l998. His began with blurry

vision and we went the rounds of MRIs,EEGs,angiograms, spinal taps and was

originally diagnosed as a stroke. When he did not improve or stabilize we went

to Hopkins in Baltimore. Eventually, after a brain biopsy we were told it

was pretty certain to be cjd. We were not told of the horrible consequences of

this disease. In fact, we were treated less than human by the medical

professionals in all the four hospitals we went to. On September 28,l998,

without prior warning, he stopped talking, walking, eating, or drinking. I wish

I had known he would stop talking. We had so much left unsaid. I brought him

home from the last hospital in early November where with the help of family we

are caring for him at home. When he made it through Thanksgiving we gave thanks

to still have him. When he made it through Christmas, I knew the real meaning

of Christmas. We love him dearly. He is the one we all leaned on, he kept our

family safe. I will never feel safe again. If he could come down with this

horrible disease, anyone could. Ten years ago he had a detached retina surgery.

I know, without a doubt, that is how he contracted the disease. His local

neurologist said it was from eating meat. I thought that kind of cjd wasn't

supposed to be in America. He supposedly contacted the CDC. I don't think he

did. I don't think he gives a damn how he got it, just to be honest about it.

Well that is my story. I am bitter, and angry that this could happen to him. I

want to do something about it. There isn't much I can do now, since I spend

every moment I have caring for him, but in the future I plan to contact my

senators, representatives and anyone else I can. Thank you for this outlet and

for all the information.