Laura's Story

My name is Laura. I am 42. I live in Connecticut. My father died of CJD on August 21, 1982, 16 years ago. He ws 52. We lived in Westchester County, NY at that time.

My father was diagnossed in October of 1979 with "Jakob- Creutzfeldt Disease". He was acting "different" - memory loss, agression, he changed - prior to that he was a loving, caring, healthy man! The onset of CJD came so suddenly - I remember he went in the hospital for tests - and he was never the same. The doctors tried to explain to us (My Mom and 2 sisters) what CJD was - but it was very unclear.... the cause, the prognosis, CJD itself... We were able to care for him at home for 2 years. Those are memories I don't like to think about - they hurt.... My Dad was my best friend, my mentor - I watched him turn into this horrible person - he kept deteriorating in front of our eyes - and there was nothing the doctors could do to make it any better.

My father had been in the Korean War - they said that is probably where he contacted it - from meat he had eaten there. They told us it was a progressive virus, that started in the brain and worked it's way through his complete nervous system.

That was apparent - I remember I would make him tea - he always drank tea after 6:00/pm - he would take the hot, hot tea and just chug it down.... He became increasingly aggressive, sometimes violent - those are real bad memories......

The doctors tried all kinds of drugs, herbs, vitamins - he even had a prescription for pot!!! That was a litle unique - My Mom and I took turns lighting a pipe for him!!!! It seemed to help his moods and his eyesight - which for a reason no one could tell us was blurring -

When we were unable to care for him in the home - he was admitted to the VA Hospital in Montrose, NY. His Doctor's name was Dr. Vincent Pasqua. Dr. Pasqua was reseqrching CJD at that time and was "thrilled" to have Dad as a patient - Dr. Pasqua really didn't shed anymore light on CJD for us - he ran a lot of tests, but we were told from the beginning there was no cure - no treatment to help - duration could be 3 weeks to 5 years.

My Mom and I took shifts going to the hospital daily to care for Dad - he was like a zombie at this time, but I kept talking to him, all the time, filling him in on my life, and what was going on around him - he failed to recognize me - he thought I was my Mom -

Dad died of "acute respiratory distress" due to Jakob-Creutzfeldt Disease. That is what his death certificate says. They asked if we wanted him flown up to Boston Medical University for an autopsy - we choose not to - we didn't know back then - they didn't know back then - they told us if we did the autopsy - they would do a brain biopsy for research - my Mom choose not too.

They told us it was not hereditary - but after Dad's death they made us all go for blood tests.

It has been 16 years since my Dad's death - and no one I ever spoke to knew of CJD - thank God for CJD Voice and all of you - I am so happy to be learning so much from all of you!

Thank you - thank you for letting me join your group - for allowing me to share my experiences and my sorrows with you - and for allowing me into your lives to share your experiences and your sorrows - and to learn and grow together to fight the CJD demon!!!

Back to THE MANY FACES OF CJD