Mondays with M – Moments that remind me of Daddy and What is CJD?

Mom and DadYesterday was Father’s Day, and I loved seeing your pictures with your Dad!  I saw lots and lots of you as infants with your dad …. LOTS of you showed photos on your wedding day … I read lots of fatherly advice … I noted that a lot of dads were already in heaven and  were missed dearly.  It made me think a lot about my own dad.  A lot of people knew my dad, Tom.  He was quite outgoing, was active in his antique car association and always had an open garage full of anybody who wanted to stop by.  But this post is not to tell you about the things that you already know about his life.  What I do want to tell you is something that not a lot of people know about, which is how he died.  Five years ago my dad died of Creutzfeldt-Jakob disease.  What is that you ask?  That’s just the problem.  Not many people know what that is, including many of the doctors who were trying to treat him.

Approximately 3 months before his death, my otherwise healthy dad fell for no apparent reason.  Within a matter of weeks, he became confused, unable to walk and looked much like an advanced stage Alzheimer’s patient.   As a matter of fact, when he was brought to the emergency room once after a bad fall, the staff told my mom there was nothing they could do for Alzheimer’s.  I can understand that if you did not know the history how one might think that … but we had to explain that this state of dementia was new and extremely rapid.  Weeks spent waiting for neurological appointments were only adding to the frustration, as he was deteriorating at a rate where mere days were making a difference.

After searching and combing the Internet looking for information, our family discovered the CJD Foundation and suspected that this might be Dad’s diagnosis.  According to their literature:  “The main indications leading to a possible diagnosis of CJD are rapid dementia and one or many of a range of neurological symptoms including unsteady gait, hallucinations and sudden jerking movements. “

Within days of discovering the CJD Foundation, Dad passed away, but the CJD Foundation was able to help us arrange an autopsy that did, indeed confirm that he suffered the sporadic form of CJD.  We were told that this disease is rare, only affecting about 1 in a million people.  I am personally suspicious of that statistic, given that so many of the healthcare workers that we encountered were simply treating Dad as an Alzheimer’s patient.  I had to fight to get “Alzheimer’s” taken off of his death certificate.  I believe that with appropriate awareness, it is possible that there are many more cases of undetected CJD that just go misdiagnosed.  I further believe that it is only with awareness that a cure can ever be found.

In the five years since Dad has passed, there has been much new information and educational materials released with regard to CJD.  A great video that goes into detail about CJD, it’s possible causes and transmissiblity can be found HERE.  It’s 32 minutes long … but it’s worth the watch to gather information.  Please, do it for me … in honor of my Dad.

Father's Day

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