Dead Man Walking – To the Professional

Before PSP, I was a partner at a Big 4 consulting firm and Head of Consulting in my country. I wasn’t well known, but I was respected. I had a voice.

Now, everything feels different. I’m not talking about other patients or caregivers—they’ve been incredible. I’m talking about the authorities and the medical profession. The silence and apathy are staggering.

I’ve tried to make a difference: sharing my experience as a patient—the fears, the falls, the positives—but it feels like no one is listening. Not a single medical professional outside of friends has reached out. Not a single one, despite publishing two books and writing blogs read and viewed 114,000 times. Yes, I am stubborn and relentless.

Two major charities do great work, but even they have shut me down. One refused to share my post because I mentioned faith. Another deleted my post about donating proceeds from my book Weathering the Storm – Living with PSP. They plan to feature me in two months, but I don’t have two months to wait. That’s the reality. I fully understand that charities have their rules and I truly understand the way they work—I have been a Treasurer of a UK Registered charity some years ago.

There is no treatment for PSP. No solutions. No hope to offer. I’ve seen videos of people at my stage, and their obituaries appear two to three years later. That’s my world. I am, quite literally, a dead man walking.

From a corporate perspective, I understand why people don’t engage. By the time discussions happen, my voice may be gone. But that leaves me in a strange place—I want to do something positive for PSP, yet I feel blocked at every turn.

I may be misjudging things, and I don’t intend to, but this is how I feel. You can judge with facts, but feelings are feelings. PSP is what I have, and it’s gaining on me. That’s why this matters.

If I were in the PSP “business”, I’d harness patients like me to share real experiences. I’d use resources like my book—not for profit, but to inform health workers and raise awareness. Instead, posts are ignored or deleted.

I have nothing but respect for those working in this field. But that doesn’t change how I feel: brushed off, sidelined, and running out of time.

I’m here to help—if anyone will listen. And in the spirit of transparency, here’s my book (all proceeds go to charity, with full audit trail):

• UK: https://www.amazon.co.uk/dp/B0GDFZKLTG
• US: https://www.amazon.com/dp/B0GDFZKLTG
• Kindle: https://www.amazon.com/dp/B0GD96Y1GT

I hope by the way to be proven wrong!