|
Getting your Trinity Audio player ready...
|
I promise this is not fictional!!! I wish it were!!!
It is just after midnight, and I’m sitting here slightly bruised by the day but also smiling at the absurdity of it. What should have been a quiet, uneventful Tuesday instead became a strange combination of achievement, fear, comedy and reflection. It is hard to describe PSP to anyone who hasn’t lived it, but maybe this 24 hours will give a glimpse into what one early – but advancing rapidly – stage journey really looks like.
A Very Early Start
I woke at 2:34 in the morning after a little over five hours of sleep. Garmin awarded me a sleep score of 69, which given my sleep challenges is excellent although it is part of a pattern I have noticed and measured reflecting much more exhaustion than before and the need for the body to rest.
I was awake, alert and oddly motivated, so at 2:55 I decided to test my new wheelchair and the “wheelchair push” tracking on my new 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 hit it. Maybe in hindsight I overdid it.
After some brief yoga stretched and a shower (after which I almost tumbled when I was overconfident and tried to get up from the shower chair without using the bars), I found myself at the computer at 4 in the morning writing two things: a brief post about the 1,000 pushes and a longer piece for the Times of Israel. The TOI article was later featured as a top blog, and gave me a sense of purpose in putting pen on an issue that really worries me.
Morning Moments
By 7:20 a friend had pushed me to synagogue for morning prayers. At 7:59, my TOI post was published. It gave the morning a satisfying start.
A little later I sat for coffee with my son before he travelled out of town. We had a surprisingly enthusiastic conversation about subscriptions to The Economist. I managed to resist the impulse to sign up on the spot, knowing how long it takes to arrive in Israel. Instead, I asked some friends who are flying in soon to bring recent copies, which I will happily pay for. It felt like an ordinary, human moment that I cherish more these days and I skilfully dodged a very expensive impulse..
Work, Therapy and an Unexpected Punch
I had a video conference from 9:30 to 11 with my former colleagues and a long-time client as part of my transition (I do a couple of hours a week health depending). It was a good call. Calm, productive and pleasantly free of stress.
My therapy session began at 11. I told my therapist how good I’ve been feeling. Between preparations for the upcoming wedding and the exercise I had felt unusually strong. I even said I was ready to deal with whatever God decides to send my way but that for now I felt a sort of plateau and contentment.
Halfway through the session I saw a news alert: Jesse Jackson, one of the only famous figures known to have PSP, had passed away. His path mirrored mine too closely. He had been diagnosed with Parkinson’s in 2017, a 3 year difference from my 2020 diagnosis. He was re-diagnosed with PSP in 2025, the same season as me. And now he was gone.
It hit me much harder than I expected. The change in the session was profound. Therapy ended with a revised outcome – a simple truth: I must not get overconfident. PSP strikes when I least expect it, and today’s news was a reminder, but that shouldn’t stop me feeling positive.
The Afternoon That Shifted Suddenly
I spent the early afternoon with my sister, who was with me for the day. 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 and my face felt strange in a way I couldn’t explain.
Not long after, around 2:30 or 3, the strange feeling changed into something far more unsettling. My facial muscles began twitching uncontrollably. My speech slipped away from me. My daughter looked at me with that mix of alarm and disbelief that only a loved one can wear. We tried to laugh about her real fear being the wedding photos, but there was no denying it was frightening. Eventually it faded, leaving me unsettled but functional again.
The video shows it clearly but is not for show to anyone! We reached for an order of Ice Cream to boost my energy levels (ok – to binge on my favorite food which I have to take real care not to choke on).
The Freeze
At 4 o’clock I had a short pre-arranged video call with someone I had never met. As the conversation began, I felt the early signs of a full freeze coming. I pressed the panic button on my phone that alerts family members. Moments later my entire body froze.
The man on the other side continued talking. Eventually he paused and said the unforgettable line: “The screen appears to have frozen.”
It had not. It was me. The call ended after a while (I faded away from listening I am embarrassed to say as I focused on myself and the knowledge I was frozen).
At home, the chain reaction had begun. My son called, and I couldn’t answer. He then called my wife, whose phone was downstairs. She walked past me, thought I was simply paying attention to the call, and continued walking. When she came back through the room she realized I wasn’t moving at all. She and my daughter sat with me as I slowly thawed back into myself.
It took a while before I could speak properly again.
It was terrifying and embarrassing, yes, but there was also something almost absurdly comic about the situation. Only PSP could turn a Zoom call into comedy – how many times does the screen freeze – how many times has it actually been find but the person on the call themselves has frozen.
Evening Slowdown
I spent the later afternoon and early evening in bed listening to music and eventually falling asleep, then had some food, and watched part of a movie with my youngest daughter. I moved slowly, deliberately, every action requiring 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 11pm.
A Late Night Moment of Clarity
At 11 I did something for an old friend and his son following a message I only saw when I woke up. It was completely impulsive, but this time I consulted my wife first. That in itself marks a significant change for me.
On the phone I told my friend something that surprised me in its honesty. He wished for God to 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 doesn’t have answers for PSP. But perhaps it never did. Perhaps the only thing that changed was my illusion of control. I said “From his mouth to Heaven” but I know that whatever way it turns out is ultimately for the good (in a way I believe but simply can’t rationally explain as in fact I don’t think people can especially with something like PSP).
The Day Ends With Perspective
It is now 1:34 in the morning. It was a day of highs and lows: the pride of flying through the house in my wheelchair, a productive but disrupted therapy call, meaningful work, a good act I am proud of. And at the same time there were glimpses of the fear that PSP brings: facial muscles that go haywire, a full-body freeze, hours of slowness and uncertainty. I now see that it built over the day from the walk to the freeze back to the slowness in a way which is actually consistent with other times – a warning, the storm and the recovery.
I am grateful for all my blessings. I am looking forward to the coming weeks. And yet I simply do not know what comes next. Perhaps a quiet and calm day tomorrow. Perhaps something else entirely.
For now, I hope for finish this and go back and rest.
One final thought before sleep. I left my Mac mouse in the bedroom. Retrieving it requires far more effort than it should. Getting out of the chair and going a few meters feels like climbing a hill tonight. So I wrote this without it using the keyboard and some dictation – it took much longer. A tiny frustration, but one that perfectly reflects what PSP can do to the simplest tasks.
Retirement, it turns out, is anything but boring.
