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I want to start with something that does not come naturally to me: a compliment. To myself. I genuinely hate this kind of thing. But on this occasion, I think it is warranted — and I am going to make you read why before I let myself enjoy it.
The Backdrop
PSP is a beast. Rating yourself against goals while living with this disease is nothing like measuring performance when you have a common cold, or even something more serious but recoverable. This is a progressive, relentless neurological condition that takes something new from you on a regular basis — and you do not get it back.
Since November 2025, when I set my five goals, there have been two ambulance trips. One, initially thought to be a stroke, turned out to be Bell’s palsy. Another was an actual suspected TIA (a mini-stroke) which is still being investigated (I refused to be hospitalized, which would have made the investigation quicker and I’m still waiting for the MRI) — and yesterday, a smaller similar event. Here is what best captures how crazy my world has become: that possible TIA was about the tenth most important thing in my day. Reflect on that for a moment.
Life has narrowed. I have stepped back from crowds, noise, and large gatherings. I use diapers and am wheeled to the bathroom. I am fully aware there is less to come, not more — PSP does not reverse, and I am not naive about the direction of travel. The question has never been whether things will get harder. It is how I live in the time that remains.
That is the backdrop. That is why the word “proud” carries weight.
A Note on Selfishness
I have continually wondered whether this blog is self-indulgent — a platform built for myself, about myself which perhaps causes too much pain for my family. I keep checking with them and arriving at the same answer: if even one person with PSP feels less alone, if one caregiver finds a phrase that names what they are going through, it is not selfishness. It is connection. Writing has always been how I process the world and selfishly my therapy, and also sharing it openly is perhaps the most useful thing I can still do. I wanted to name the question, because intellectual honesty demands it.
Why Goals, Not Tactics
In November I chose goals over tactics deliberately. Tactics — books written, events attended — are hostages to a disease that respects no timetable. Goals are different. They are a wider-angle lens on what a good life looks like regardless of what any given week brings. On the hardest days, they still hold. They were never built around capability. They were built around character and attitude.
The Five Goals — and Where I Stand
Faith
My faith is rock solid. Despite the progression, despite the fear, I have maintained a general sense of calm. There have been moments of panic — but they pass, and the foundation holds. This goal: exceeded.
Family First
I score this as met, and I want to be honest about why I resist higher. This period contained the most beautiful day of my life — my daughter’s wedding. I was there. I was present. It was everything a father could hope for. And yet I know I could be more patient, more present in the quieter moments and occassionally listen more. My family carries this illness alongside me, and their suffering is real. This goal: met, with love, humility, and a little self-criticism. I honestly wish this wasn’t happening to them.
Purpose
Over 50,000 views, 32,000 individual visitors, and four books written—having just released the fourth—whilst mainly relying on dictation software — while living with PSP. I say this not to boast, but to make a point: purpose is one of the most powerful medicines available to any of us. This goal: exceeded, and then some.
Positivity and Joy
I know how this sounds given everything above. And yet I would rank this among the most positive periods of my life — sincerely. Yes, it requires ice cream and involves navigating panic attacks. But I attended my daughter’s wedding. I published four books. I have laughed, rested, and been surrounded by people I love. Positivity is not the absence of difficulty. It is a choice made in spite of it. This goal: exceeded.
Dignity
This is the goal I am most surprised to score as exceeded. The reality of my daily care would once have seemed unimaginable to me. And yet I feel dignified. My new carer has been a genuine blessing. I am not such a burden. I am not a “they.” Whatever indignities the disease imposes on my body, my sense of self remains intact. This goal: exceeded.
The Honest Summary
Four exceeded, one met — and I hold Family First with honesty and an intention to do better. I am not setting new tactics; this disease will not respect them. The five goals stay exactly as they are, because they have given me something more valuable than a to-do list: perspective, a wider picture, and a reason to keep going that is bigger than any single day.
Yesterday gave me a shock — the tenth most important thing that happened. Today I am still here, still writing, still grateful. I know there is less road ahead than behind, and I know the gradient is steepening. But right now, in this moment, I am proud of how I have walked it.
That, I think, is worth a small pat on the back.
