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One of the things that has surprised me most about living with Progressive Supranuclear Palsy is not the disease itself.
It’s how incredibly low-tech many of the ways I cope with it have become.
We’re living in an age of artificial intelligence, self-driving cars, robotic surgery and wearable computers. Yet every morning, one of the first and most important battles I fight is won not by cutting-edge technology, but by a packet of eye wipes from the local pharmacy.
That thought struck me again this morning.
I took off my sleep mask, opened my eyes and, as happens almost every day, couldn’t read the time on my watch. My eyelids were full of gunge, partially stuck together, my vision was blurred and they simply refused to focus. Before I could do anything else, I reached for the eye wipes beside my bed. Some people achieve the same result with good old-fashioned soap and water. I simply find the wipes easier.
Thirty seconds later, I could see.
As I put on my FL-41 rose-tinted glasses, which help with the photophobia PSP has given me, I found myself smiling at the irony. “Photophobia” sounds dramatic, but it simply means an extreme sensitivity to light. On some days, even ordinary indoor lighting can feel painfully bright.
For someone living with a complex neurological disease in 2026, almost everything I rely on to keep my eyes functioning would have been instantly recognisable decades ago. No artificial intelligence. No futuristic gadgets. Just a collection of surprisingly ordinary tools that somehow help me get through the day.
That made me curious, so I counted them.
Depending on how you classify them, I rely on thirteen different technologies and techniques to help me manage my eyes. Only one of them could reasonably be described as high-tech. The other twelve are gloriously, almost embarrassingly, low-tech.
PSP is relentless, and none of these things changes the disease itself. My eyes remain one of the biggest challenges I face, and over time they will almost certainly become more difficult to manage. But until science gives us better answers, these simple, everyday solutions are the best weapons I have.
So what does my rather unusual eye armoury contain?
It starts with the basics.
- Soap and water (or eye wipes)
Good old-fashioned soap and water, together with eyelid cleansing wipes, remove the overnight crusting that often seals my eyes shut. It’s hardly revolutionary medicine, but every morning they help me start the day seeing rather than guessing. - Eye masks
Years of business travel left me with what I thought was an absurd collection of airline eye masks. I never imagined retirement would reveal their true purpose. I probably have enough to last the rest of my life.
They now help protect my eyes whenever they simply need a rest, and I almost always sleep wearing one. Living in a sun filled country is great for many reason butt means the sunshine can be wonderfully bright for most people and utterly unbearable for me. Sometimes even polaroid sunglasses aren’t enough when I’m being wheeled to physiotherapy, so out comes an airline eye mask (sometimes two). Who knew that the most useful souvenir from years of international travel wouldn’t be the frequent flyer points?
- Polaroid Sunglasses
Outside, a good pair of sunglasses has become essential. I rarely leave home without them.
- FL-41 glasses
Indoors, my FL-41 glasses have become one of my closest companions, taking the edge off lighting that would otherwise leave me squinting or closing my eyes altogether.
- Baseball cap (and occasionally a towel!)
A baseball cap helps enormously with overhead sunlight or strong indoor light. When the sun comes in from the side, however, I’ve occasionally resorted to draping a towel over the side of my head. It isn’t exactly Paris Fashion Week, but it works. I’m still hoping to find a decent wide-brimmed hat that can retire the towel.
- Light switches
Then come the most overlooked pieces of technology in the house: light switches.
I’m become surprisingly strategic about turning lights on and off. Sometimes adding light helps. Sometimes removing it helps even more. I never used to think about lighting. Now I adjust it almost instinctively throughout the day.
- Lens cloth/cleaner
Keeping my glasses clean has also become more important than I ever appreciated. When your eyes are already struggling, fingerprints and smudges don’t merely annoy you. They become another obstacle. A simple lens cloth and cleaner have become unexpectedly valuable members of the team.
Not every solution is quite so simple.
- Botox
Every three months I receive Botox injections around my eyes through my neurology department. Most people associate Botox with cosmetic clinics. Mine has a rather less glamorous purpose. It helps reduce the involuntary eyelid closure caused by PSP, giving me back some precious hours of vision.
- Prism glasses
My prism glasses help compensate for some of the eye movement problems caused by PSP, particularly when I’m reading. They also enable me to see my phone much better, especially with the FL-41 covers on top.
- Computer settings
Alongside them, I’ve learned to adjust my computer’s brightness, contrast and screen resolution until my eyes are just about willing to cooperate.
- Larger phone fonts
Likewise, the larger font setting on my phone has steadily grown over the past few years. At this rate, the text will soon be bigger than the phone.
There is one piece of technology that genuinely surprised me.
- Garmin watch with a red flashlight
My Garmin sports watch has a built-in red flashlight.
I discovered it almost by accident, but it has become remarkably useful during the night. The soft red light lets me look around the bedroom without flooding the room with bright white light or waking my wife. I certainly didn’t buy the watch for that feature, but sometimes the unexpected extras turn out to be the most valuable ones.
- Eye drops
I should also include eye drops. They’re a perfectly legitimate part of my eye armoury, even if I have a slightly complicated relationship with them.
I know they help lubricate my eyes, wash away irritation and generally make things more comfortable. My neurologist would probably tell me I should use them more often.
The problem is that I hate putting them in.
I know I’m not alone. Lots of people dislike eye drops. So, despite knowing they help, I usually leave them until I really have to. It’s one of those occasions where knowing the right thing to do and actually doing it aren’t always the same.
- Espresso
Finally, there is the best item in the entire collection.
This morning my daughter handed me an espresso.
No, it doesn’t improve my eyesight.
But it definitely improves the outlook of the person trying to cope with it.
The truth is that none of these things treats PSP. None slows the disease. None prevents tomorrow morning from beginning exactly as today did.
Even as I write these words, I’m still struggling to see my computer screen clearly.
I’m sure there are more ideas out there, and I’d genuinely love to hear them. One thing I’ve learned through writing this blog is that patients often discover practical solutions long before they appear in medical leaflets. If you’ve found something that makes life easier, however ordinary it may seem, please share it.
When people think about neurological disease, they imagine breakthroughs in laboratories and futuristic medical devices.
I hope those breakthroughs come, and I pray they come soon.
But until then, my daily battle won’t be won by artificial intelligence.
It will be fought with eye wipes, soap and water, eye masks, Polaroid sunglasses, FL-41 glasses, a baseball cap, light switches, a lens cloth and cleaner, Botox, prism glasses, carefully adjusted computer settings, a Garmin watch’s red flashlight, eye drops… and, whenever possible, an excellent espresso.
That’s fourteen technologies and techniques in all.
Thirteen are wonderfully low-tech. One is unexpectedly high-tech.
And every single one of them helps me fight a disease for which there is still no cure.
The final irony is that, despite all this attention on my eyes, my eyes themselves are usually not the problem. The real culprit is my brain. PSP disrupts the messages travelling between my brain and my eyes, so perfectly healthy eyes can behave in decidedly unhealthy ways.
