This Week, PSP Lost

There’s no treatment or cure for PSP – but that doesn’t mean you lose. This week was a clear win for me.

I’ve been reflecting on the past few days. PSP showed up in many ways – eye issues, pain, falling – but it didn’t define my week. If I had to guess, it took up less than 0.1% of my mindspace.

Why? Because I had a good week.

Friends came from abroad and stayed with us – twice. I did some meaningful work. I laughed with my kids, family and friends. The wheelchair worked, and I got out and about. I made it to prayers every day. I played some great chess games (and lost five in a row – but losing to my son is a win in itself).

PSP was there, but it was background noise.

And yet, one PSP moment stood out – for good reasons. I fell while getting out of my chair at the outlet mall. A young worker from the frozen yogurt smoothie store ran out with a glass of cold water, hoping we were okay. It was incredibly kind. I had convinced myself no one saw me fall – but she proved me wrong, in the best way. It was one of the sweetest moments I’ve experienced in a long time.

Of course, the decline is real. And it’s clear that the medications I’m still on – left over from my earlier Parkinson’s diagnosis – aren’t having any real effect. I stay on them mostly out of caution, worried about withdrawal symptoms, at least until I can sit down and discuss it properly with my neurologist.

Technically, I could say there’s no real update this week. But that wouldn’t be accurate. Yes, I’m living through a decline – even if it feels like PSP is in the background. I’m still living.

Wishing everyone a lovely and as healthy a weekend as possible. In the words of my neurologist, who sadly passed away:

“Make sure PD/PSP/xxx is part of your life and doesn’t become your life.”

This week, I did just that.
For me, this is the real win  –  1 for Quality of Life, 0 for PSP.