r/CJD

my uncle recently got diagnosed with CJD. he started having some memory issues last fall. they were worried he had a brain tumor or something so he got a bunch of scans and diagnosed him with CJD. He got a spinal tap and the T-Tau protein came back positive but they got blood in the 14-3-3 so they couldn’t test it. He went 2 more times and they got blood in it again. But 4 drs have not diagnosed him with CJD based off his brain scan, symptoms, and the t-tau protein being high. what’s weird to me is he started having symptoms last fall and as of rn he can still drive and talk semi normal. He has some loss of motor skills and memory issues but some days he’s perfectly normal. Every post I’ve seen with this disease they die within a few weeks maybe months of being diagnosed. I am just very confused. They gave him 6-12 months. So crazy that he seems semi normal and was given less than a year to live. Anyone has this experience with the slow progression?

hi, i saw this in the FAQ and wanted to gently challenge it:

Your loved one will not be in any physical pain, but both you and them will likely have mental distress.

My dad is in the endstages of CJD. He's had really intense headaches and they get really bad really fast. He's also had pain from the muscle spasms and a lot of discomfort from being bedbound. We've had to fight a lot for appropriate pain control and he was very frustrated with this.

Any way to change this FAQ? Yes it's not an incredibly painful way to go but he absolutely is having headaches that weren't there before.