I have often thought about describing a day to give people insight into life with PSP. Today is the first day of 2026, so it feels like the right time.
As I reflect, it was a day of tremendous highs and lows.
The morning started fairly normally. I woke up very unstable at an early hour, but after yoga and coffee I felt okay. We had close friends from the UK staying with us, and breakfast was lovely. Yesterday my friend told me there was nothing wrong with my cognition because I did well in a chess game.
Later, the day was filled with good things. Another close friend and her mother visited, and I gave a lecture to a colleague pro bono via Zoom.
More importantly, my second book was published. It should have been a special day. The book shares my experiences with PSP as a patient, and I believe it can make a real difference.
But the day was overshadowed by my mistake. I know that sounds harsh, but it fits.
At the end of breakfast, I told my friend I didn’t feel good and maybe shouldn’t get up. But I did. I stood and began walking toward the toilet with my walker, moving slower than ever. After four meters, I froze completely. Standing there, I was in real danger of falling. My wife and two friends propped me up for what felt like hours but was only minutes. I was fully conscious yet unable to move.
Eventually, I signaled with one hand to sit me in the wheelchair. They lowered me into the chair, and I sat with my eyes closed, exhausted. It took hours to recover, and now I must use my wheelchair indoors because the walker is no longer an option.
It was hard for my friends to see me so overtaken by the disease, but their advice was helpful. They spoke objectively about the need for care support and reminded me that my decision to get up was unwise. I could have prevented this by listening to myself.
I am big—six foot five and bulky—and it took three people to hold me up.
I am exhausted now. The day was good in many ways. I saw friends and gave a lecture, but it was another sign of how invasive PSP is and how it is gaining on me. Powerdowns and freezing of gait are becoming more frequent, and I hate it. It makes me afraid to go out, worried I will freeze in public.
My second book is out, and the timing feels right. It justifies my urgency to share my views on PSP. I am not a salesperson, but since it launched today, I have included a photo of the links. I am proud of this achievement.
By evening, I am calmer. I write this after dinner, sitting upright for an hour as instructed by the swallow expert to reduce choking risk.
PSP is horrible, but I will share the message I sent to support groups last night:
“Saying Happy New Year as a PSP patient to a PSP group feels wrong on many levels. We know it will not be happy in the traditional sense for so many in the community, including ourselves. BUT I want to wish each person a New Year with as much happiness as possible under the circumstances—more peace, more moments of connection and calm. Truly sending my love to all ahead of this milestone, my first as a confirmed patient.”
