The First ‘P’ in PSP Stands for Progressive: 5K → Walker → Wheelchair in 190 Days
As I write this, I remain positive about life, despite what I’m about to share. I truly enjoyed my weekend with my daughter. My nature is optimistic—but I can’t pretend the pace of my PSP journey isn’t frightening.
It’s hard to believe that just 102 days ago, I reluctantly began using a walker. It was a tough transition, driven by necessity. I’ve tried to make the best of it—taking it with me to Osaka and London—but it hasn’t been easy. Even harder to accept is that only 88 days before that, on January 31, 2025, I ran my last 5K (some would say “walked” 😉—it took 43.4 minutes).
Then came this Friday night. For the first time outside of airport transfers, I had to use a wheelchair. I walked to synagogue—very slowly, shuffling. On the way home, I couldn’t continue. My legs simply wouldn’t move. A kind friend was walking with me, and my daughter met us and fetched the wheelchair we had rented “just in case.” It was a moment I had dreaded. Despite my best efforts and total dedication, it came just 102 days after I started using a walker.
I haven’t surrendered to the wheelchair. On Saturday morning, after a good sleep, I managed to walk to and from synagogue with my walker—painfully slowly. But I know the wheelchair is likely to become part of my reality—hopefully not for a while, but at some point. I’ve consistently fought against the statistics of PSP, and I will continue to do so. But the speed of change is truly frightening.
Sadly, this is the reality of today, but hopefully, tomorrow will be better, and I will push off the next use of the wheelchair for a long time. And yet, there are moments of light. On Saturday morning, when I arrived at synagogue, they asked me to lead the prayers. Standing—leaning heavily on my walker—I was able to do it. So I fight on.
And yes, humor helps. After years of rarely changing cars, I now find myself constantly upgrading my “wheels.” In this PSP period, I’ve gone from walking, to a cane, to a walker, and now to a wheelchair. I think there may even be an electric model at some point.
I try to write in a way that reflects my positive approach to life, albeit admittedly with the occasional detour down “depressing lane,” and with a sense of realism that helps me prepare for potential changes without letting them feel inevitable. It’s important to acknowledge the seriousness of PSP and accept that the foe is formidable. As optimistic as I am, the sheer pace and scale of change is what makes PSP so terrifying.
And as strange as it may seem to others—we are still ahead of the true storm. For now, I can get around, and my cognition is intact. Somewhere over the horizon is the real storm, but for now, I live in the moment and focus on doing what I can to the maximum with tremendous gratitude to G-d for the blessings I have.
I started this blog for myself—to help process and deal with the changes. It’s helping me, and I believe it’s giving others an important window into what this journey looks like.
