No 100% Certainty Until Autopsy: PSP and Its Shared Challenge with Parkinson’s, Alzheimer’s, ALS, MS and More
About nine months ago when I was diagnosed as having “appears to be PSP”, the phrase “appears to be” was both a lifeline and a frustration. I held on to the hope that it could be something less invasive and less devastating. At the same time, it was annoying because after five years of thinking […]
Help! Is Anyone Listening? Why My PSP Delay Was Both a Blessing and a Curse
I was diagnosed with PSP (Progressive Supranuclear Palsy) in early 2025, but it could have been much earlier. Like many neurodegenerative diseases – PD, ALS, Alzheimer’s – it’s never 100% certain until autopsy. That uncertainty gave me three to five years of ignorant bliss, for which I’m grateful, but it’s terrible for the science of […]
PSP (PD/xyz) in context
No one can pretend that PSP is a friend. It’s not nice to watch yourself or a loved one decline at a horrific speed to a condition that, in its final stages, combines the worst of Parkinson’s and Alzheimer’s. I certainly don’t face it with joy, and it’s far from comedic – as the decline […]
Misdiagnosis – The Emotional Cost Biomarkers Could Spare
From theoretical science to the real world of emotion and consequences, misdiagnosis in neurodegenerative diseases like Progressive Supranuclear Palsy (PSP) carries a heavy toll. Yesterday, I shared a scientific perspective on biomarkers. Today, I’m speaking from the heart about my journey and the urgent need for change. The Rollercoaster of Misdiagnosis I often make it […]
A personal story from Cure PSP – The Gervais Family
A number of people have asked me what PSP is or isn’t, and I have about as much information as anyone else with Google and Gen AI. I just watched this video made by Cure PSP about a lovely Canadian family, and in particular the husband/father/grandfather Pierre and his wife Jocelyne. Pierre was initially diagnosed […]
“Be positive” The most annoying words but yet the key…my perspective
I have tried to write this 15 times… it is really hard to articulate, but it is something I have an overwhelming desire to talk about. It is something I think about so much and want to get it off my chest – you can choose to read, choose to delete, choose to disagree. It […]
March 2023 – PD…short update…choking, 40 becomes 20 and I really am British
I have started to feel that this blog is a little self-absorbing/self-indulgent and I have debated whether to keep it going, especially with all the other things going on in the country and the world which are all more fundamental. However, based on feedback from others, and the help this has been to me to […]