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Tonight, I had a lightbulb moment – well one for me anyway.
Living with Progressive Supranuclear Palsy (PSP) doesn’t just feel like “getting worse.” It feels, to me, like aging at hyper‑speed – as if someone grabbed the timeline of my body and dragged it forward years at a time.
I feel like I’ve been thrown into a much older version of myself. My balance, my vision, my movement – they’re shifting so fast it’s as if whole seasons of decline are happening in a single month. My cognition which also declines with PSP, is not seeming to do the same thing which is a real blessing.
Of course, I don’t have a “non‑PSP version” of myself to compare myself to and my blog is not a science journal (and doesn’t intend to be). But if I did, I imagine the differences would be shocking. Every day feels like it contains the functional wear‑and‑tear of multiple “normal” days. And it isn’t linear – some months feel like I lose ground at a pace that’s almost violent, and occassionally it feels like it plateaus (I hope for one of those Please G-d for the next few weeks).
Even without science, the feeling tracks with my sense of reality. In a year I have gone from 5k with great vision to someone who struggles to see properly who is largely homebound in a wheelchair about to get a carer. I have good days and bad but I exhaust must faster – again like a person much older.
It’s a painful contrast to “normal” aging. But then I dipped into the science – gently, as a patient, not an expert – and what I found there seems to be more than a little emerging logic but again with all my usual caveats.
PSP is what researchers call a primary tauopathy. In plain terms according to some research I did: the tau protein, which normally acts like the scaffolding inside brain cells, starts collapsing in on itself. Instead of stabilizing microtubules, it forms tangles that choke off and kill neurons – especially in brain regions controlling movement, balance, eye motion, and front‑of‑the‑brain thinking. Alzheimer’s also involves tau tangles (though it’s initially driven by amyloid‑beta), which is why PSP can feel strangely like an accelerated, targeted version of brain aging.
There is a lot more research being done, and no doubt other views, but I am relying on how I feel. So I began to ask myself as a bit of a ridiculous effort. What age am I, really, in functional terms?
Because PSP progresses so much faster, and sometimes in sudden leaps, than normal aging, it feels like I’m aging at an accelerated clip, maybe the functional equivalent of 3–5 “normal” years for every calendar year that passes.
(One research paper the accelerated age at a cell level at approximately 4 times the average biological clock – https://pmc.ncbi.nlm.nih.gov/articles/PMC10378390/#sec3-cells-12-01922 )
A healthy person might expect to live (who lives where I do and is in ‘normal health’) into their early 80s with gradual, decades-long decline in strength and independence. With PSP, that same massive loss of physical resilience, mobility, balance, and daily autonomy gets compressed into just a handful of years. In functional terms, my body and life already probably feel closer to someone in their late 60s or 70s – wheelchair-bound, largely homebound, needing help for basics and looking to start with a carer this week – even though chronologically I’m decades younger.
Of course, this isn’t a precise biological-age calculation (PSP isn’t true whole-body aging; it’s a specific, ruthless attack on key brain circuits for movement, eyes, and balance). But the contrast seems brutal and undeniable to me. I am effectively catching up on the generation ahead of me in decline, at a quick speed (look in your rear view mirror!).
That realization hits hard, but it also reframes things: this isn’t just “getting worse” in a linear way; it’s a rapid, targeted neurological fast-forward slamming into specific systems while (thankfully) sparing others like cognition for longer.
That realization changed something in me.
It has reframed to an PSP for me, not as a single malfunction or isolated symptom – but as a rapid, targeted neurological aging process slamming into specific brain circuits while leaving others strangely untouched (at least early on). It explains why everything seems connected, why the decline feels wave‑like rather than step‑like, and why the pace is so brutal.
It also explains why the coming period is so fearful for me because it represents a real challenge at the things that are so important to me – control, cognition and personal dignity.
None of this changes the prognosis. It doesn’t slow the progression. There is still no cure.
But bizarrely — it gives me perspective.
It also gives me dark humor:
Will I suddenly prefer bridge over chess? Will I start dressing like I’m skipping fashion decades at a time? It explains to my kids my choices in music and a whole array of things.
It also means that that 0.5kg I consumed over a day actually was many days which somehow makes it feel much better.
Who knows. But the idea makes me smile.
Here’s what I do know:
Time feels different now. Each day holds more change than it should. Each year contains multiple years inside it.
And somehow, acknowledging that doesn’t crush me – it sharpens me. If my life is moving faster, then every moment matters more. Every conversation. Every connection. Every slice of joy.
I don’t know how solid the science is but the feeling is absolutely a feeling and I want to make the time count.
