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This post is hard to write, but it feels important. It illustrates the reality of the PSP journey I’m on and hopefully helps others understand what this disease looks like in practice. When I look at the timeline, it’s hard to believe how much has changed in less than a year. I hope 2026 brings a better picture, though I have my doubts.
I gave up driving cars in February 2025 to avoid putting others at risk. In August, I started using my second “vehicle” — an electric wheelchair. It gave me independence and freedom, especially on Shabbat and regular days. Sadly, I feel the time to retire from that form of transport is approaching.
My neck muscles have become so stiff they feel like a tree trunk. Moving my head is increasingly difficult and frustrating. Worse still, while walking with my wife and dog on Shabbat, I had an episode. I don’t know if it was freezing, zoning out, or powering down, but I went into a trance like state and drove straight into a block and then a tree. My wife had to keep me moving by adjusting my knees, and a good friend came to the rescue.
This, along with the wedding fiasco last week where I froze and couldn’t drive the chair, signals that it’s probably time for a manual wheelchair and to restart the carer discussion — something I’ve been delaying with just one step left.
To give a sense of the PSP timeline, here’s the past year:
Mobility Milestones
• Jan 2025 – 5K Run (diagnosis)
• April 2025 – Started using a walker
• August 2025 – Electric wheelchair
• Jan/Feb 2026 – Likely move to manual wheelchair
Other Milestones
• Feb 2025 – PSP diagnosis, stopped driving cars
• March 2025 – Effectively retired (formal in June)
• May/June 2025 – Last foreign trips (Japan & UK)
• Nov/Dec 2025 – Moved downstairs, changed diet to avoid feeding tube, rigidity worsened, freezing episodes increased — but published first two books on Amazon 😊
This is my PSP journey in a nutshell. Who knows what 2026 will look like? Please G-d it will be slower and full of fun (aka absurd moments and time with friends & family).
I’m working on books 3 and 4, and despite everything, the rest of Shabbat was lovely with the kids — even though I lost every game of Chess and Splendor (except one!). I’ll keep trying to stay positive. There’s still so much to look forward to, and I think it’s important for others to understand the practical timeline patients and caregivers face.
Wishing everyone a good week!
