Hello Friends,
We did a brain donation to Brain Support Network in order to further research and also to receive exact diagnosis of Sandy's condition. After three months, I received a letter from Mayo Clinic in Florida. Sandy's condition was Corticobasal Degeneration, not PSP. The neurologist had kind of gone back and forth between the two, eventually diagnosing him with PSP with CBD overlay. I am not surprised because one side was affected much more than the other. This was combined with a verification of MS, and mild case of hydrocephalus (he had surgery for this with a shunt implanted in his brain a couple of years ago). If that weren't enough, he had some indication of Alzheimer's, although it said it was more "age related" and wouldn't have been enough for a AD diagnosis. Sandy didn't have dementia although he had lost some cognition along the way.
I am glad that we made the decision to do the donation. It gives more clarity, validates the fact that we went through a really hard thing together (we weren't just being wimpy). Today I am organizing my files so I can eventually do my 2019 tax return. Just for fun, I'll give you a photo of the "pile" of medical receipts for 2019. I guess 2020 tax return won't be nearly as complicated.
Thinking of writing a booklet on the positives of having this disease. I can start with "less medical paperwork." Hope this doesn't offend anyone. Just having a little dark humor this morning.