We recently lost Rick to CJD. Until July- I had never heard of it. What I was familiar with, was all the horrible symptoms that go along with this devastating disease. In a very short amount of time with no 2 days being the same, we lost the battle. Our battle against time....as no doctor (until the very end), looked beyond "the normal". Every blood test, every CT/MRI came back clean. Unremarkable is the medical term. I filled a notebook with notes I started taking when all these odd behavioral changes started , thinking sharing it with doctors would be helpful.. It wasn't. Oh sure, the doctors that it was great that I was documenting all the extremely bizarre behavior and mental changes happening, but in the end, it meant nothing. See there is no treatment for CJD. No cure. CJD in my opinion is like a category 5 tornado. It disrupts life as you know it in a very short amount of time. It's devastating and you can't stop it from happening. When it's happening, you're terrified and confused. Our family spent 7 months living in constant fear of what the next day would bring. We didn't officially get the CJD diagnosis until 1 day before he passed. To be completely honest, had his last MRI (performed weeks prior to his passing) not shown anything....we would never gotten the diagnosis. The MRI revealed extensive brain damage. For weeks (while inpatient in the hospital), the doctors asked many questions about past head trauma. Stroke. Heart attack. None of which Rick had. Then finally, a spinal tap was done. Revealing incredibly high TAU protein levels. Prion disease. CJD. Unrecoverable. Devastating. The entire duration of this, Rick went untreated, as no doctor would prescribe anything until they could "narrow down" what type of dementia he had, if it even was dementia.  As many doctors said, a healthy man of 55 is too young to have any type of progressive dementia- that doesn't have a family history of it. The thing is.... dementia is a by product of something bigger, and we ran out of time being on the waitlist to see specialists. He was hospitalized before we had any answer as to what was happening to him.
I will be forever grateful, for that last MRI. Forever grateful to anyone, helping to find a cure. Please help us raise $10,000. To have a research grant created in Rick's name. To leave a legacy for an amazing human. A man who will forever be missed.