In the symptom race that is PSP, my eyes are pulling ahead of balance and slowness. In fact, they’ve become a real concern.
I remember it as clear as day, funny and shocking at the same time. When I was first diagnosed with “Parkinsonism” in 2020, I went to the eye clinic for a half-day tour of various machines. I was complaining of blurred vision, and they checked it out thoroughly. Their conclusion was a mix of good and bad news. The good news: it had nothing to do with my eyes, my eyes were in great shape. The bad news: it was neurological. The brain was the problem. Not exactly a comforting result.
Tangentially, my vision has always been a bit of an issue, but usually due to a lack of concentration. I once walked straight into a lamppost and, in true British fashion, said “Sorry” to it. Sadly, it’s no longer just incompetence or inattention.
More than two years ago, doctors diagnosed me with Vertical Eye Palsy, meaning I can’t move my eyes up or down without moving my head. I first noticed it while driving: I couldn’t see the traffic lights when I was the first car at the junction and had to lift my head to look up. The same happened when trying to do up my belt or inject the pump when I was on it, I simply couldn’t look down.
Since then, the symptoms have progressed. My eyes are blurry and watery almost constantly, and I often struggle to read. I also experience light sensitivity. To give a practical example: without my glasses (which are for long-distance vision), I can’t see the words I’m typing on my laptop right now. With my glasses, I can’t read a book up close, I have to use prism reading glasses or squint with one eye.
My eyelids involuntarily close or narrow, especially when I’m active, like at the gym or during Pilates. I had a funny exchange with my Pilates trainer: she said my eyes were closed, and I insisted they were open. We went back and forth until she took a photo. See for yourself, I think it’s fair to say she was right.
On Yom Kippur, I actually came home from synagogue because I couldn’t read the prayer book, it was just too blurry.
So, bottom line: I’ve lost one sense, smell. A second, taste, is significantly degraded. And now, one of the big ones, vision, is clearly under threat.
That said, I want to be clear, this isn’t a critical problem at the moment. It’s annoying, and yes, it’s scary when I think about the future. But right now, it’s liveable. I’m adapting, and I’m grateful for the tools and strategies that help me manage day to day.
The good news is that it is sporadic (except for the eye palsy) and there are ways to compensate: eye drops, eye movement exercises, and prism glasses. But PSP is a degenerative, progressive disease, so improvement isn’t likely. Still, it’s early days, and I’m hopeful I have a long road ahead.
Why am I writing this?
- To share a major symptom of PSP, Vertical Eye Palsy, along with backward falling, which are probably the two most telling signs.
- Because it’s hard to be precise about these symptoms. Often, it’s more a feeling that something’s wrong than clear test results. Neurological eye issues are difficult to test for, and specialist visits are rare.
- Most importantly, it was blurred vision that made me voluntarily give up driving. I realized I was a hazard on the road if I couldn’t see clearly, especially traffic lights. Too many people drive when they probably shouldn’t. Maybe this will prompt someone in a similar situation to think twice.
- I’ve noticed that when I’m rested and not stressed (and not fasting 😊), my vision improves. It’s clear that my environment affects my symptoms.
- For years, I traveled constantly and collected countless amenity kits from business class flights. I never imagined how useful those eye masks would be. I’m grateful I saved them; time with an eye mask and a cold compress is the most relaxing solution I’ve found so far.
This journey with PSP has taught me to find gratitude in small things—like those eye masks or the ability to adapt to new challenges. It’s also deepened my appreciation for gifts I once took for granted, like sight. Every day, as part of my morning prayers, I recite the blessing, “Blessed … Who Gives Sight to the Blind.” I used to say it without much thought, but now it resonates deeply. Good eyesight is a true gift, one that impacts so much—reading, making eye contact, or simply navigating the world. When I sit with my eye mask on, feeling the weight of what I’m losing, I’m reminded of how much I still have. Faith gives me the strength to face this challenge, not by erasing the fear or frustration, but by grounding me in hope and resilience. I know I can cope because I’m not alone in this.
