Have you ever been on a Zoom call where the screen freezes. Well yesterday the person on the call with me thought the screen had frozen but in fact it was me!

I am aware that there are not many people with an advancing terminal disease who are writing about their journey in real time. I find myself in that position, and I feel it is important that people see patients with serious illness as full human beings rather than as objects to be cared for. I published a slightly different version of this on my PSP blog, but I wanted to share it more widely.

Below is a short video clip from the NBC show Zoey’s Extraordinary Playlist, which includes a storyline about the main character’s father, who has PSP, the same disease I have. The show beautifully captures something essential. Even when a patient can no longer communicate, they are still very much present. I want to build on that idea through my own story.

View this post on Instagram

A Day That Was Anything but Ordinary

To add my own experience, I want to share a single day from my life with PSP. Living with a terminal illness is not one dimensional or even three dimensional. It is surprisingly complex, often absurd, sometimes frightening, and sometimes unexpectedly funny. I want to give a Day in the Life account of an unusually strange day that is not completely unrepresentative of what PSP can do.

The patient is not a thing that needs to be cared for. I am a person with major challenges who is still living, thinking, laughing, and struggling through whatever each day brings.

For readers who may not know, PSP is Progressive Supranuclear Palsy, a rare and aggressive neurological disease that slowly affects balance, movement, vision, speech, and swallowing. There is no treatment and no cure. Most medical literature describes an average life expectancy of six to nine years from the onset of symptoms. I am now in year six.

This is what one day looks like.

It was just after midnight when I sat down to write this. The day had left me slightly bruised but also smiling at its absurdity. What should have been a simple Tuesday turned into a mix of achievement, fear, comedy, and reflection.

I woke at 2:34 in the morning after a little more than five hours of sleep. Garmin rewarded me with a sleep score of 69, which for me is excellent. It fits a pattern I have noticed of deeper exhaustion and the body pushing itself to rest more.

By 2:55 I was wide awake, alert, and oddly motivated. So I decided to test my new wheelchair and the wheelchair push tracker on my watch for the first time. I pushed myself 1,000 times in 39 minutes. A year ago that would have been a respectable 5k run for me. It felt wonderful to have a goal and reach it. In hindsight, it may have been too much.

After some brief yoga stretches and a shower, during which I almost managed to fall by trying to stand too quickly from the shower chair, I sat at the computer at 4 a.m. and wrote two things. One was a short post about the 1,000 pushes. The second was a longer piece for the Times of Israel on the situation in Bnei Brak. By 7:59 it was published as a Featured blog, which gave me a small but meaningful sense of purpose.

At 7:20 a friend pushed me to synagogue for morning prayers. Later I had coffee with my son before he traveled out of town. We had an unexpectedly enthusiastic conversation about subscriptions to The Economist. I resisted the urge to sign up on the spot, knowing how long it takes to arrive in Israel. Instead, I asked friends who are visiting soon to bring me recent issues. It felt like a normal, human moment, the kind I value more than ever, and I successfully dodged a very expensive impulse.

Work, Therapy and an Unexpected Blow

From 9:30 to 11:00, I had a video conference with former colleagues and a long‑time client as part of my work transition. It was calm, productive, and pleasantly free of stress.

My therapy session began at 11:00. I told my therapist how strong I had been feeling. Between preparations for the upcoming wedding and the exercise, I felt unusually stable. I even said I felt ready to handle whatever God might send my way. I felt content, almost on a plateau.

Halfway through the session a news alert appeared. Jesse Jackson, one of the few well‑known figures with PSP, had passed away. His path mirrored mine too closely. He was diagnosed with Parkinson’s in 2017, three years before my own 2020 diagnosis. He was re‑diagnosed with PSP in 2025, the same season as me. And now he was gone.

It hit me far harder than I expected. The entire energy of the session shifted in a moment. By the end, the message was clear. I must not get overconfident. PSP does not care how good I feel. But that does not mean I should stop feeling good when I can.

I spent the early afternoon with my sister. We had lunch, talked, and I took a short but refreshing nap. Later we went for a walk. She pushed me while I held the dog’s leash from the chair. It was peaceful until I told her something felt wrong. My leg was weak. My face felt strange.

By around 2:30 or 3, the feeling changed into something much more unsettling. My facial muscles began twitching uncontrollably. My speech slipped away. My daughter watched with that mixture of alarm and disbelief that only someone who loves you can show. We tried to laugh about her real fear being the wedding photos, but we were both worried. Eventually it faded, leaving me shaky but functioning again.

The episode was filmed, though it is not something I will ever show anyone. Afterward we ordered ice cream, partly for energy and partly because it is still my favorite indulgence, even though swallowing it requires real care.

At 4 o’clock I had a short scheduled video call with someone I had never met. As the conversation started, I felt the early signs of a full freeze. I pressed the panic button on my phone that alerts my family. Moments later my entire body locked.

The man continued talking. Eventually he paused and said the unforgettable line: “The screen appears to have frozen.”

I faded out of the conversation completely, unable to move, unable to speak, focusing only on the fact that I was frozen inside my own body.

Meanwhile at home the chain reaction began. My son called. I could not answer. He called my wife, whose phone was downstairs. When she passed me, she assumed I was listening to the call. When she came back, she understood that I was not moving at all. She and my daughter sat with me until I slowly thawed back into myself.

It took quite a while before I could speak normally again.

It was frightening and embarrassing. Yet there was also something almost comically absurd about it. How many times has a video call frozen. How many times has it actually been the person and not the screen.

I spent the late afternoon and early evening in bed listening to music and drifting in and out of sleep. Later I ate something and watched part of a movie with my youngest daughter. I moved slowly and deliberately. Every action required conscious effort. I was simply not myself for the rest of the day.

By 7:30 I was back in bed and slept until around 11.

A Late Night Moment of Clarity

When I woke up, I responded to a message from an old friend and did something for him and his son. It was impulsive, but this time I asked my wife first. That alone marks real progress.

On the phone I told him something that surprised even me. He wished that God would ignore the scientific predictions of my disease and give me many long years. I told him that I have come to understand that everything truly rests with God now. Science has no real answers for PSP. Maybe it never did. Maybe the only thing that changed was my illusion of control.

I said, “From your mouth to Heaven.” But I also know that whatever happens will ultimately be for the good, even if I cannot rationally explain how.

The Day Ends With Perspective

It is now past 1:30 in the morning. This day carried both pride and fear: pushing myself through the house in my wheelchair, a productive therapy session that turned into something else, meaningful work, a good deed I am proud of. And then there were the shadows: the facial spasms, the full freeze, the long hours of slowness and uncertainty. I can now see the pattern. The warning, the storm, and the slow recovery.

I am grateful for my blessings. I look forward to the coming weeks. But I do not know what tomorrow will bring. Perhaps a quiet, simple day. Perhaps something else entirely.

One last note before sleep. My Mac mouse is in the bedroom. Retrieving it requires more effort than it should. Walking a few meters tonight feels like climbing a hill. So I wrote this with only the keyboard and some dictation. It took far longer. A small frustration, but one that perfectly represents how PSP turns the simplest tasks into challenges.

Retirement, it turns out, is anything but boring.

© The Times of Israel (Blogs)