|
Getting your Trinity Audio player ready...
|
I have used the analogy before of an old iPhone that suddenly loses charge, dying at 40%, shutting off without warning, no gradual fade. That is the powering down side. But there is another side to that analogy I have not spoken about enough: the phone that never properly charges in the first place. You plug it in overnight and wake up to 45%. The charger is connected. The time is there. The battery simply will not fill.
That is sleep with PSP.
Sleep is the one thing that should restore the body. And with PSP, it often does not come. That is one of the major symptoms of this disease, yet it remains consistently overlooked and under-rated. Retirement did not fix it. Reducing stress did not fix it. Most PSP patients seem to describe the same reality.
I sleep less than four hours a night, not because I want to. I am retired and have very little I actually need to do. This is not a scheduling problem. It is a core symptom of PSP.
This Is Not a Lifestyle Problem
For years, I assumed that if I managed stress well enough and rested carefully enough, sleep would improve. So I tried everything: consistent routines, eye masks, no screens, no stimulation before bed. Standard sleep hygiene advice, followed diligently. CBT. CBD. Pills of every description.
It made almost no difference.
That has forced me to confront something uncomfortable. This is not about habits, discipline, or trying harder. This is neurological.
PSP affects the brainstem and thalamic regions early in the disease. These are closely involved in regulating sleep and wakefulness. Polysomnography studies have shown profoundly disrupted sleep architecture in PSP patients, including fragmented sleep, repeated waking, and severely reduced total sleep time. In one cohort, REM sleep was entirely absent in roughly a third of patients. None of the healthy controls showed absent REM sleep.
One emerging theory is that the systems responsible for initiating and maintaining sleep degenerate faster than some wake-promoting systems, creating an imbalance the brain struggles to regulate.
At times, it can feel as though the body becomes trapped in a state of wakefulness it can no longer properly override.
One comparative study examining non-motor symptoms in PSP reported impaired sleep quality in 95.5% of participants and clinically significant sleep disorders in 84.1%. Poor sleep in PSP is not a side effect. It is close to universal.
Researchers have described PSP patients as existing in a state of “profound sleep deprivation without recuperation the following day.” That sentence hit me hard the first time I read it. It describes the experience almost exactly.
What My Data Shows
Fifteen months of Garmin tracking, excluding Shabbat and Jewish holidays when I do not wear the watch, tells a stark story.
On the 42% of eligible nights where the watch actually recorded sleep, the average was 4.6 hours. But on the remaining 58% of nights, sleep dropped below Garmin’s three-hour threshold, below which the device classifies it as a nap rather than sleep and records nothing at all.
Factor those nights in, and the true average is probably somewhere between 3.4 and 3.8 hours.
The average man my age sleeps around seven hours a night. I am functioning on roughly half that. Across fifteen months, only eight nights crossed seven hours.
My body battery data may be the most honest measure of all. My daily lows drop almost every day to 5, the lowest possible score. Even on better days, I rarely recharge above 40 to 55 out of 100 before the next decline begins.
One line from a sleep analysis has stayed with me:
“The body is operating in a chronic energy deficit with no spare reserve.”
That is exactly what it feels like.
Back to the iPhone analogy: waking up every morning at 45%, then watching the battery drain toward zero long before the day is done.
The Consequence
The broader sleep literature is sobering. Chronic sleep deprivation is associated with increased risks of cardiovascular disease, stroke, metabolic dysfunction, and cognitive decline.
But statistics still feel strangely abstract compared to the daily reality.
The reality is sitting in a chair unable to respond because the system has simply run out of reserve. The body powers down. The nervous system shifts into something closer to stand-by mode.
People can see the mobility changes. They can see the falls. What they cannot see is what happens when the nervous system never truly powers back up in the first place.
That invisible exhaustion may be one of the hardest parts of PSP to explain.
The Real Battle
All the things that drain my battery, stress, noise, light, overstimulation, absolutely matter. Managing them matters too. I know they accelerate the shutdowns.
But the body still has to power back up afterwards.
And that requires sleep. Sleep that PSP itself appears to interfere with at a neurological level.
There is now research underway specifically aimed at improving sleep in PSP. The fact that these studies are needed says everything. The problem is recognised. The mechanisms are becoming clearer. Effective answers remain frustratingly elusive.
The irony of retirement is that it revealed something I had not fully accepted before. Remove the stress, and the sleep problem remains.
Which means the sleep problem was always primarily about the disease, not the circumstances around it.
I find that strangely clarifying, even if it offers no solution.
So for now, I continue trying to power back up on whatever the system can still produce. And I write honestly about the reality of it because if nearly every PSP patient is dealing with some version of this, someone should probably say so plainly.
That is what this blog is for.
Nothing here constitutes medical advice. I write only from personal experience alongside publicly available research.
