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This afternoon I warned my therapist that I thought I was going to write a blog post about something we had just discussed and that I had only just realised.
She smiled.
Clearly, she already knew there was very little chance I wasn’t.
As I sat down to write, or rather to dictate, I hesitated over one word: miracle.
It is a very big word, and in my situation it is one I use with care. I still have PSP. I know how quickly things can change, and I know there are many people living with this disease whose experience is very different from mine. Some have lost cognitive abilities that I still have, and I never want anything I write to sound as though I take that for granted or fail to recognise the reality of their journey.
So perhaps gift is the better word.
It is a gift which my faith tells me came for a reason.
Not because I have escaped PSP. Far from it.
Physically, the disease has moved with frightening speed. I need a wheelchair. I have a live-in carer. My behaviour is affected, as are my vision, balance, speech, swallowing and countless other parts of daily life. I have retired and stopped driving. None of that feels like a gift, and I would never pretend otherwise.
But there is another side to this journey that I have only recently stopped to appreciate.
From the moment I was diagnosed, one part of PSP frightened me more than any other: the possibility of losing my mind. That fear was not irrational. PSP shares its underlying tau pathology with Alzheimer’s disease, and a recent narrative review concluded that around 70% of people with PSP eventually progress to dementia, although the risk varies between different PSP subtypes. My probable subtype, PSP-P, often preserves cognition for longer than other variants. But reassurance is not a promise, and I braced for the worst.
I assumed my body and mind would go together.
They haven’t.
Nearly eighteen months later, my body has deteriorated dramatically, but my mind has, so far, been left broadly alone. I can still engage with people, wrestle with ideas, follow complex conversations, lose at chess for entirely non-medical reasons and, perhaps most importantly, keep writing.
Or, more accurately, keep dictating.
My fingers often refuse to cooperate these days, but my voice and a little AI software still get the words onto the page. Over the last four or five months alone, I have dictated around 335,000 words. They are not perfect words, and they are not always elegant ones either, but together they have become several books, hundreds of blog posts and countless conversations with people around the world.
Until today, I had almost taken all of that for granted.
My therapist gently suggested that perhaps I shouldn’t.
The more I reflected on it, the more I realised she was right.
Every person with this disease travels a different road. Mine has brought enormous physical losses. But it has also allowed me, at least for now, to keep telling my story. I am still the one telling the story, not only the one it is happening to.
That is not something I earned. It is certainly not something I can assume will always be there.
Will it last?
I have absolutely no idea.
Tomorrow may be different. Next month may be different. Next year, if I am blessed to have one, may be different again. PSP is not a disease that lets you make promises to yourself.
Perhaps that is exactly why I should stop treating today as ordinary.
I spend a great deal of my writing describing the losses this disease brings, because they are real, they are painful, and they deserve to be named. But if I am going to be honest about the losses, I should be just as honest about the gifts.
For me, the gift is this.
Today, I can still think, reflect, create and tell my own story.
I cannot choose what PSP takes from me tomorrow, and I do not know how long this privilege will remain.
I only know that today it is still here.
And amongst the pain, that feels like an extraordinary gift.
1. Moore KS, Stipho YS, Niemann N, et al. Dementia in Progressive Supranuclear Palsy: A Narrative Review. Neurology and Therapy. 2026;15:479-496. https://doi.org/10.1007/s40120-025-00884-x
