I’m not talking about one of my main symptoms—balance and movement. I’m talking about life/work balance, which feels just as hard to master.
Balance has never been my strong suit. I’ve spent most of my life as a workaholic, and now, as a retired PSP patient, I’m still learning what balance even looks like, even as I am learning to take it easier.
Retirement is often a challenge, but stopping a career on a dime? That’s a shock to the system. I’ve read that even the most carefully planned retirements can be hard, so doing it abruptly was never going to be easy. Maybe that’s why I’ve tried to fill the gap in other ways.
Filling the Void
First, I turned to mentoring and writing blogs. Then came chess. Then, almost instinctively, I wrote a book in a week – and it felt great. So I wrote a second one in less than a week – and that felt great too. I am proud of what I have written.
Yesterday, I woke up at midnight and started drafting a third book. It’s preprogrammed in me: when there’s nothing else to do, I write. I churned out 13,000 words, but thankfully for you and me, I didn’t like the output. It didn’t flow. It didn’t work. But that’s not the point.
The point is, I keep pushing because that’s what I know.
The Daily Struggle
I try to distract myself despite effectively imposing a forced staying home, mostly because of my fear of freezing, falling, and powering down. I graze on food constantly, but being on a pulp diet to avoid the next step of a food tube means it never really satisfies me. I watch some TV, but my eyes make it hard.
Daytime sleep? Almost Impossible. And yes, I worry about a lot of things including like all of us, finances—even though we’re okay thanks to years of hard work, retiring at 50 brings its own challenges.
So I push. I write. I create. But today, I’m stopping. I’ve written two books in less than a month, and the last thing I want is to spoil a good start with a rushed book I’m not proud of. Today is going to be a Netflix day – and Pilates. Or so I say now.
The Reality of PSP
It’s hard. PSP robs me of sleep, mobility, and peace of mind. And knowing it gets an awful lot worse? That’s a weight no one wants to carry. I’m coping, and yesterday ended on a nice note after an afternoon dip, but that doesn’t mean it’s easy.
This morning, I paid $20 – which I can largely save you – and got access to a new research paper called Progressive Supranuclear Palsy – A Global Review, released in September 2025. To me, it said the sum total of not very much other than that there are huge variations in Asia in the incidents per 100.000 but the numbers are so low it is clearly a statistical anomaly. In the section on treatment, it confirmed what we already know: with “no approved medications which alter disease progression.”
Finding Balance
Every patient faces a different combination of challenges, and caregivers have their own battles too. One of mine is balance.
Balance – both physical and life/work – is a hard skill to learn after a lifetime of the alternative. But I’m trying. One day at a time.
