Hello everyone,
I received the pathology report on Jeff's brain yesterday. It showed he certainly had PSP, but an atypical type. They found pathology in parts of the brain that can cause symptoms from frontotemporal dementia and/or corticobasal syndrome. That pretty much fits his diagnosis of a behavioral variant of PSP and explains the sexual violence and other off symptoms.
In addition, they found he had stage 1 Alzeimers.
So for those of you still in this battle and some days you ask yourself, is this part if the disease? Am I crazy? I would like to tell you that you are not crazy. There is something wrong in your loved ones brain that they cannot tell you about and you cannot see and maybe even the doctors cannot understand. The disease can be in places of the brain that causes symptoms all over the map.
It is my hope that Jeff's donation will help with diagnosis and treatment of this disease. Because clearly he had it, but in a different way, so maybe that will help doctors think about it differently.
If anyone would like to see the actual report or would like to talk about my experience with the brain donation process, please private message me.
Keep fighting fellow warriors!
Ginger