PSP Power Downs

I’m going to disappoint my mother-in-law (never a good idea!) because we discussed last night that I’d write about the word “OK,” how we use it to dodge hard conversations, smooth over discomfort, and move on to easier topics. I even planned to dive into its quirky Boston origins in the mid-19th century. (Nerd, I am!) Honestly, I always assumed “OK” was a British idiom, something designed to help people like me avoid talking about personal stuff. The fact that it’s an American term is astonishing. Maybe Brits and Americans aren’t so different after all, but then again 🙂

But here’s the thing: I can’t write about “everything’s okay” today. Because right now, things aren’t. Instead, I want to share something unusual, something not many people know about PSP, but that’s become a big part of my life (in my own words): Power Downs.

I’ve written a lot recently about freezing episodes (Freezing of Gait, or FOG). This ‘Power Down’ feels similar in some ways, but at the same time, it is very, very different. Freezing was like hitting pause on my feet; power downs are like the whole system slipping into standby mode.

What’s a Power Down? In patient forums, I’ve seen others describe this feeling as “shutdowns,” “hitting the wall,” or simply “crashing.” Personally, I like “Power Downs.”

Imagine your body suddenly deciding to conserve energy like a phone slipping into low-power mode. That’s what happens to me. It happened yesterday, and twice in the past week and a half. Everything slows. Speech becomes almost impossible. My eyes close without permission. Moving feels like wading through treacle, if not simply impossible.

It’s exactly like that phone battery metaphor: with some rest, a moment eventually comes where I have enough power to feel alert again, but a “dazed” feeling lingers for hours afterwards.

The Science Bit (Or My Best Guess) The truth is, I don’t know the exact cause. I’m not a scientist. Maybe it is severe fatigue, maybe it is a neurological block, or maybe it’s a mix of both. While I call them “Power Downs,” doctors might call it severe “Central Fatigue” or “Akinesia.” There isn’t a perfect study on my specific experience, but many people with PSP report this kind of debilitating energy loss or sudden crashes—including fatigue in around 70–80% of cases in some studies, from what I understand but don’t quote me. It’s comforting to know others experience something similar, even if they maybe don’t have a cool name for it yet.

I do know from the limited study I have done (ok, I have done a little more than that), that some researchers link these symptoms to the tau protein (the same culprit found in Alzheimer’s) messing with circuits in the brainstem and basal ganglia. Whether it’s the battery draining (fatigue) or the starter motor failing (akinesia), the result is the same for me: a total halt.

Symptoms often include:

• Slowed movement and thought (bradykinesia/bradyphrenia)
• Speech difficulty (hypophonia or even anarthria)
• Forced eyelid closure (known as Apraxia of Eyelid Opening, or AEO)

The Unpredictability Factor The mental impact is becoming a significant issue, precisely because these shutdowns don’t always follow logic. Yesterday, I had a perfectly normal morning – good sleep, coffee with friends – before it hit. Another episode happened at my sister’s house after a long but relaxing day. Another day, a smoothie out with a friend, and then boom: three hours of near-total immobility. No warning, no clear trigger.

That unpredictability is exhausting in itself. It is threatening to make me want to stay at home more of the time, just to be safe.

Living With Power Downs So what do you do when your body decides to hit standby? I am only starting to learn, but I think the truth is simply common sense.

• Before it happens: Do the basics – prioritize sleep, hydration, and food. Listen to your body and try to spot the signs before the shutdown hits.
• When it happens: Get yourself out of immediate danger (falling, choking, or whatever the risk is) as best you can. Even if it means going to sit on a chair or the floor.
• Afterwards: Just give yourself time to recover.

I am not aware of any magic fix – but please share with me if you do have one.

It is just one of the very annoying impacts PSP is having on me. Sadly, it threatens my mental state as I am keen to stick close to the house to avoid it happening in public. As I wrote about yesterday, it has a wider implication on the family as they see yet more signs of the PSP gaining ground.

Why Share This? Sadly, as guilty as I feel (for no rational reason), I can’t avoid my family seeing the PSP changes. It is a terrible load for them, but I can’t help that.

I’m writing this because power downs aren’t just “being tired.” They’re a full-system slowdown that changes how you live. And if you’re dealing with PSP, knowing you’re not alone matters. It sounds so strange that people may simply not believe it, but whatever the technical term, I can clearly say that this is part of my reality now, one more layer of complexity in a condition that keeps surprising me.

If you’re living with PSP, please share your stories with me and any coping mechanisms you’ve found.