From F9 to 🔄: My Battle with Impatience in a PSP World

I’ve always been the person who hits refresh. Waiting for a payment to clear? Refresh. Waiting for an email? Refresh. But PSP, and the dopamine-related drugs I am on, have made it so much worse.

Now, as I wait to hear if my book is accepted by KDP, I’ve checked at least a hundred times. It’s not just impatience – it’s torture. 72 hours feels like a generation.

Before PSP, I was already wired this way. I was the one who arrived early for meetings, who opened the  – wave with six seconds left (as I wrote recently). And if you speak “old laptop language,” a few of you will know what I mean when I say I was a constant user of F9 – the magic refresh key. Later came Ctrl+R, Command+R, and every shortcut that gave me the illusion of control. We know logically it doesn’t make sense – we all know the expression about a watched pot never boiling – but for me, it’s compulsive. The Chrome refresh button 🔄 has become one of my best friends.

My family knows this side of me too well. If I ever say, “I’m thinking about buying something,” it’s basically code for “I’ll own it in five minutes.” Writing and sending a book to publishing in less than a week? That’s me. And now, I wait – pained at the delay – checking for updates like my life depends on it. Last week it was also anti-slip socks, ordering ice cream, and buying a new Ninja blender after I broke ours.

Here’s what most people don’t realize: this isn’t just personality. PSP rewires your brain. Studies show that impulsivity – difficulty waiting, acting too soon – affects up to a quarter of PSP patients, and often comes with apathy and emotional swings. In fact, two-thirds of patients in one study had both apathy and impulsivity, and about 20% also had emotional lability (see article) . It’s not stubbornness; it’s neurology.

And for those of us with PSP-parkinsonism (PSP-P), there’s another twist: dopaminergic drugs like carbidopa/levodopa can fuel obsessive behaviors. My doctor, and many in the PSP support groups, advise staying on these meds because they may subtly be helping with rigidity and movement – even if the impact feels imperceptible. However, they can trigger compulsive checking, repetitive thoughts, and even addictive tendencies – similar to impulse control disorders seen in Parkinson’s disease. So when I hit refresh for the hundredth time, it’s not just impatience – it’s chemistry.

Interestingly, there’s one time I don’t feel compelled to refresh: the Sabbath. When it crosses my faith line, the compulsion fades. It’s as if the boundary of belief creates a pause button in my brain – a rare and welcome relief. That contrast fascinates me. It shows that even when neurology and medication push me toward obsession, faith can still draw a line I won’t cross. It is probably a study for people like me and others like smokers, for whom faith and rules can control impulse.

Why does this matter? Because when someone with PSP seems restless or demanding, it’s not about being difficult. It’s about a brain that’s losing its brakes – and sometimes a medication that presses the accelerator. For me, It feels like rubbing salt in an old wound; the disease layers on top of a pre-existing tendency.

Yet, we still have to learn patience because rushing is dangerous. Falls, choking, injuries. My old habit of doing three things at once could now be fatal. And yes – as a disabled person, I will sometimes have to wait longer than I’d like, as much as it hurts.

So I’m learning. Slowly. Mindfulness helps. Breathing helps. Sometimes I count to ten before hitting refresh. Sometimes I fail. But I try. Because as one fellow patient told me: steady as she goes.

If you know someone with PSP, understand this: waiting is hard for us in ways you can’t see. And if you’re like me – wired for speed – know this: slowing down isn’t weakness. It’s survival.

What helps you slow down? Share your tips – I need them.