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How much of my poor sleep is PSP, and how much is still within my control? An honest look at the science behind sleep, the reality of living with PSP, and why pressing one small button can still make a difference.
When you think about the things that most influence life with Progressive Supranuclear Palsy (PSP), almost all of them are long-term factors. Some you are fortunate enough to have, others you aren’t. Some you build over years, while others are simply outside your control.
Family. Friends. Your partner. Faith. Purpose. Exercise. Financial security.
They all matter enormously. They shape how we cope with this disease and often determine how well we live with it. But none of them can be summoned overnight to make tomorrow morning easier.
Sleep is different.
It is a button we can still press today.
I say press, not control, because anyone living with PSP knows this disease doesn’t hand us the controls. Sleep disturbance is woven into the illness itself. Throughout my own journey I have swung between extremes. There have been long periods where sleep felt almost impossible, followed by very short stretches where I slept surprisingly well. On my worst nights I have often shrugged my shoulders and blamed PSP.
To be fair, that is partly true.
I have tried almost everything. Cognitive Behavioural Therapy (CBT), sleep neurologists, medication after medication, sleep hygiene programmes and relaxation techniques. If someone suggested it might help, I probably tried it.
Blaming the disease is honest.
But it is only half honest.
To understand the other half, it helps to understand what PSP is actually doing.
What PSP is actually doing
A few years ago, researchers at the University of California, San Francisco published a study in the journal Sleep with a title that immediately caught my attention: Sleepless Night and Day, the Plight of Progressive Supranuclear Palsy.
They carried out overnight sleep studies on people living with PSP before inviting them to take a series of naps the following day. The results could almost have been lifted from my own life.
People with PSP took roughly five to six times longer to fall asleep than healthy older adults. They averaged only around four hours of sleep a night compared with about six hours in the control group. Their sleep was lighter, more fragmented and contained far less of the deep and REM sleep that restores both body and mind.
None of that surprised me.
What fascinated me was what happened the following day. Despite being exhausted after such poor sleep, around a third of participants couldn’t fall asleep during any of the scheduled daytime naps. Brainwave recordings suggested they were trapped in a state the researchers described as hyperarousal. Their brains remained unusually alert even while their bodies were desperate for sleep.
In other words, the normal mechanism that says, “You’ve been awake long enough. Now it’s time to sleep,” simply wasn’t working properly.
That explains so many of my nights, and just as importantly, so many of my days.
When I wake after an hour and spend the next three hours desperately trying to fall asleep again, it isn’t a lack of determination. It isn’t weakness. It isn’t because I’m somehow doing sleep badly. It is my brainstem behaving exactly as this disease causes it to behave.
Oddly enough, I find that comforting.
The disease has a name. The mechanism has a name. I’m not imagining it.
The half that is still mine
But this is where honesty matters.
When I look back at my worst nights, I also have to admit that not every bad night belongs entirely to PSP. Some belong, at least partly, to me.
They come down to things I can still influence. A comfortable mattress. A supportive pillow. A sleep mask. Turning my phone off. Going to bed earlier instead of watching another programme. Taking medication when I’m supposed to instead of trying to battle through.
None of these are revolutionary. The difficult part isn’t knowing what to do. The difficult part is consistently doing it.
If anything, the science makes these choices even more important. If your brain is already fighting against sleep at a neurological level, why hand it even more reasons to stay awake? A bright screen. Late-night television. Stress. An uncomfortable bed. A room that’s too warm.
If the deck is already stacked against you, it makes sense to play every card you still hold.
For too long I convinced myself that sleep was simply beyond my control. I’ve realised that isn’t entirely true. Waking at 3:30 a.m. instead of 2:00 a.m. may not sound like much, but when you live with PSP it can transform the following day.
That balance, accepting what I cannot change while working hard on what I can, has improved enormously since I retired. The stress of consulting deadlines has disappeared and I no longer instinctively reach for my phone in the middle of the night to check emails, a habit that ruled my life for years.
Retirement has certainly helped, but the last two nights reminded me that I still have choices to make.
The duvet
My wife and I recently celebrated our wedding anniversary with a short break away.
During nearly three decades as a consultant, I stayed in hundreds of hotels. Some were luxurious. Most have completely disappeared from my memory. I couldn’t tell you what any of those duvets felt like.
Until this one.
Without exaggeration, it was the most comfortable duvet I have ever slept under.
It sounds ridiculous that a duvet could become part of a life lesson, but lying there I realised something I had somehow overlooked. There are still things I can improve, and sometimes they are surprisingly simple.
Last night reminded me of that lesson once again. I went to bed early. I wore my sleep mask. Sadly, I didn’t have that duvet to help me. I still woke during the night and PSP still made it difficult to fall asleep again. I’m not pretending the night was perfect because perfection probably isn’t realistic anymore. But this time I resisted the temptation to switch on my phone. I simply lay there, gave my brain the opportunity to drift back to sleep and, eventually, it did.
Overall, I had a genuinely good night’s sleep. I still woke at around 4 a.m., but that is a world away from waking at 2 a.m.
The following morning I felt the difference. My movement was a little easier. My thinking was clearer. My mood was better. I had more patience.
One better night’s sleep didn’t change my PSP.
It unquestionably changed my day.
And when you’re living with a progressive disease, a better day is never a small thing.
The mathematics of comfort
I’ve reached a simple conclusion.
Whatever genuinely helps you sleep is worth taking seriously.
The better mattress. The proper pillow. The blackout mask. The duvet. White noise. Noise-cancelling headphones. Earplugs. Medication your neurologist recommends.
Whatever safely gives you a better chance of sleeping is not a luxury.
It is part of your treatment.
In fact, I’m seriously considering tracking down that duvet, even if it turns out to be ridiculously expensive.
Ironically, many of us will happily spend significant amounts on treatments that may produce only modest improvements, yet hesitate over spending money on something that reliably makes the very next day better.
Of course, none of this guarantees success. PSP will still produce dreadful nights. The button won’t always work.
But there is little point pressing it if we immediately sabotage it by scrolling through messages at three o’clock in the morning. That has been one of the more uncomfortable lessons I’ve had to learn.
The research offers one final sobering thought. Sleep disturbance at the time of diagnosis appears to be associated with a poorer outlook as PSP progresses. Researchers have also found that many people with PSP underestimate just how badly they are sleeping. If your sleep feels poor, it may actually be worse than you realise, making it something worth discussing openly with your neurologist rather than simply accepting in silence.
I cannot change the fundamentals of PSP. Nobody can, at least not yet.
The long-term fighters, my family, my friends, my faith and my sense of purpose, will help carry me through the years ahead.
But sleep is different.
It is a button I can still press tonight.
Perhaps that is what honesty really looks like with PSP: accepting what the disease has taken away while refusing to ignore the things that are still mine to influence.
Some nights the button works.
Some nights it doesn’t.
Press it anyway.
