Condolences to you and goobster. My father in law was diagnosed with CJD in 2020. It was during this shit time when Melbourne was in lockdown. He lived in Staten Island, which meant it was impossible for his daughter to fly out to say goodbye to him. He got unwell, then went into delirium, then became unresponsive, and all she could do was speak to him over the phone while his wife held it to his ear. And then it was just a matter of weeks or a couple of months until he died, with her calling his wife and her brother every couple of days to touch base. Six weeks later, she's sitting at her desk at our new apartment, two minutes out from a very tense zoom meeting with her very tense boss, when her phone rings from her father's number. She thinks "this is it" and picks up the phone, expecting to receive the news we'd all been expecting. It was her father, calling with a question about documentation she'd mailed to his wife while he was in decline (the conversation literally started in the form: "Hey, that x you sent me, does it relate to z or y?"). He had no memory of what had happened to him for the past two months, but he was back to normal, except that two months in a hospital bed had left him unable to walk. The doctors also had no explanation for what had happened to him. Anyway, he eventually passed away 18 months later (he'd lived a big life; his body was falling apart). Because he'd been diagnosed with CJD a year and a half earlier, that remained the official cause of death, even though it very clearly wasn't any form of CJD I've heard of. And of course, because his official cause of death is CJD, his daughter, who has a rare blood type and a regular blood donor, is now unable to donate blood. Six months after this, a family friend of my mother's died ... of CJD. So now I've known two people who've died "of CJD". The whole experience has left me wondering how many deaths attributed to CJD are actually something else that can't be accounted for.
The interesting thing is the test for CJD is "do we detect prions in one of these three places", one of which is cerebrospinal fluid, which so far as I can tell needs to be done at the CDC because that test took three weeks. The lame thing is the interfamilial recriminations created around "if the doctors haven't figured it out it's obvious you're failing" aimed at my aunt. I don't know that we'll ever recover. My wife and I did a fair amount of looking over doctor's notes and lab requisitions just so we could say "yeah, looks like they're doing all the things and the studies they're referencing aren't ones you find casually, these guys are really digging" and it STILL wasn't enough. I actually suggested Jedi-mind-tricking my other aunt into inviting my sister out with her just so she had someone to ricochet off of without tearing the fucking family apart (it appears to have worked). So it wasn't so much just the ridiculously bad illness? It was the nature of everyone in the family to go HELP HARDER and figure out a way to blame the people on the ground. "Oops, I guess it wasn't mad cow" is so far out of the probability fan that it sounds like a Mr. Bean episode. There were so.many.people behaving badly and no provisional diagnosis would shut them the fuck up.
That sounds fucking awful. I'm sorry, dude. Daughter from California Syndrome?