Pathology Report

[Gingerw3]

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

[Inparadise]

My late husband also had Alzheimer’s in addition to PSP..........he was further along with the Alzheimer’s, yet he was only 68. There were three additional brain abnormalities, the significance of those I don’t know. I will always wonder if his use of marijuana and other drugs during his college years contributed to this.

[mjtogether]

I am sure my husband has PSP but I also feel there is "something else" going on. For my child and grandchildren sake, I am arranging for a brain donation/autopsy.

[Abrecheisen53]

Ginger, we too donated John's brain. John passed a year ago in September. We had the donation all set, and then Covid hit. Luckily, we did manage to find a pathologist to harvest the tissue. Never regretted our decision. John had 100% PSP. I also got it listed as cause of death on his death certificate. So important to represent for those research dollars.

The year ahead is also a journey. Take your time and don't let anyone rush you. Even a year out, if I hear a certain song I can start to cry. How lucky Jeff was to have you, and you him. Good luck to you. Alice

[AliBee1]

Thank you for posting Ginger and sharing the results of Jeff's brain pathology. Nigel donated his brain too and I agree it is the only way the doctors will ever get to really understand what is going on with PSP and CBD. Take care of yourself x