I was diagnosed with PSP (Progressive Supranuclear Palsy) in early 2025, but it could have been much earlier. Like many neurodegenerative diseases – PD, ALS, Alzheimer’s – it’s never 100% certain until autopsy. That uncertainty gave me three to five years of ignorant bliss, for which I’m grateful, but it’s terrible for the science of treating PSP and finding ways to manage it.
The Near-Miss in 2022
In December 2022, I wrote an blog ironically titled “It Could Have Been a Lot Worse.” At the time, I had not seen my private neurologist for about a year, and I almost cancelled because I felt great. But during that visit, he noticed worsening balance, ongoing choking, and – most importantly – clear signs of vertical eye palsy as my eyes didn’t follow his finger up and down. He ordered an MRI, suspecting PSP. As we left the meeting dazed, we did a quick Google search and were shocked by what we read (once we skipped over Google’s insistence that I wanted a Sony PlayStation). PSP has a much shorter life expectancy than PD and generally very unpleasant years. It was a massive shock, and we were given no support or explanation – just notes that said “suspected PSP.” Four weeks later, after the MRI (which I later learned is not conclusive), the doctors decided on balance not to change the diagnosis from PD. As I wrote then – I was so relieved.
Selfishly, NO
So, would I have wanted to know then?
Selfishly, NO. With no cure and no treatment (unlike PD), I’m grateful I had three years believing I was fighting a terrible but more manageable disease. I lived well: yoga, running – even a 10K – and life felt relatively normal.
Back then, I even wrote about the story of the Rabbi and the Goat:
“A farmer lives in a house with his wife, children, and grandparents. It’s so noisy he thinks he’ll go crazy. The rabbi advises him to bring his animals inside – first chickens, then goats, then sheep. The chaos gets worse. Finally, the rabbi tells him to take all the animals out. Suddenly, the house feels peaceful. I felt the same way: PD was still there and would continue, but after fearing PSP for a few days, PD seemed almost manageable.”
As I wrote then: “It’s a long game with good moments and less-than-good moments… humor and positivity are critical. I can’t say I always have them, but it’s my goal to live with this attitude.”
I traveled, worked, and enjoyed life until progression made it clear something far worse was happening. By early 2025, I was falling, struggling with my eyes, slowing on the Vyalev/Produodopa pump I had been so excited about, and other medications were not working. I was diagnosed when it became undeniable that it was not PD (see my blog summary of research on the transition from PD to PSP: [link](https://benlazpsp.com/2025/08/15/e35-hours-of-pivoting-and-my-deep-dive-into-the-transition-from-parkinsons-to-psp-p/)). I stopped working only when it was unavoidable. In hindsight, I was told at the right time – when escalation demanded action. For that, I thank the doctors who erred on the side of caution. Earlier diagnosis might have stolen those good years and created a self-fulfilling prophecy of decline.
But for the Greater Good, ABSOLUTELY YES
Here’s the vicious cycle: PSP is rarely diagnosed early because it often mimics PD (and even appears similar on a DaTSCAN). With no definitive test, by the time people are told, they’re often on the fast track to wheelchairs and rapid decline. That means there aren’t enough patients for trials. Fewer patients mean fewer trials, less research, and minimal investment in biomarkers or treatments. If early testing existed, maybe PSP would be treatable today.
So yes – for the sake of future patients – I wish I’d had a definitive answer sooner. Imagine what three extra years of research across patients like me could have done. That time was lost. In a different parallel universe, I might have been able to do something about it.
This is why support groups are filled with caregivers, not patients. By the time we know, it’s too late to contribute meaningfully. If we want to change the game for PSP and other atypical Parkinsonian disorders, early diagnosis must become a priority. The signs were clear in my old blog posts – balance issues, choking, vertical gaze palsy. Doctors saw them. But without a system for early detection, nothing happened. I don’t blame my doctors – who wants to give a determination of PSP when it’s too early and no test exists? The system prevents it, and for me personally, it was right. But for the disease, it’s a bad sign.
A Call to Action: Is Anyone Listening?
I don’t know if anyone in the medical or research community is listening. Most feedback I get is from caregivers and patients, not professionals – even though my blog has now reached 100,000 views. But I’ll keep saying it: early diagnosis is the key to breaking this cycle. If you have any influence, please push for it. It could change countless lives. Please share – it seems people don’t want to know or act (or they are doing so and keeping patients like me in the dark) which would be far better.
Am I wrong? Please challenge me. Do you have similar experiences? I’d love to hear.
