A note before you read — my father passed away in 2024. I have been wanting to write about him and about the illness that took him for a long time. This is that essay. I am sharing it because PSP is a rare disease that most people — including us, at first — have never heard of. And because he deserves to be written about.
My father was 69 when he passed away.
Still young, by any honest measure. Young enough that retirement had only just arrived — the season of life he had worked toward for decades, the one where he would finally slow down and enjoy what he had built. He never got to live it the way he should have.
He was the most active person I knew. Always moving, always working, always finding something that needed doing. Hardworking in the way that becomes identity — not just what you do but who you are. And through everything, through every financial difficulty and uncertainty that life placed in front of him, he remained optimistic. Genuinely, stubbornly optimistic. He believed things would work out. He made them work out.
He used to tell me — be brave. Never fear anyone.
I am still trying to live up to that.
When We First Noticed
It was during the pandemic that my mother first saw something change in him.
She is sensitive and intuitive in the way that people who love someone deeply become sensitive — attuned to the small shifts that others miss. She had never seen him like this before. He was falling backwards. The man who used to bathe in a couple of minutes was now taking thirty to forty-five minutes. And the exhaustion — a heaviness that was new, that did not fit the person she knew.
As children we noticed too — but we told ourselves it was age. That is the comfortable explanation, the one that does not require action. His steps had slowed, become careful and small. But it was only when his walk became genuinely unsteady — almost baby-like — that we knew it was time to see a doctor.
My father, I should say, was particular about doctors. He had one physician in Bangalore whom he trusted and he preferred to see nobody else. He disliked check-ups, disliked hospitals, disliked the whole apparatus of medical attention. So there had been a natural reluctance to push him before he was ready.
When we finally brought him to his physician, a brain MRI was ordered immediately.
The MRI showed multiple clots. Treatment began at once — the doctor also suspected a stroke, and given my father’s hand tremors, noted early signs of Parkinson’s. Medication was prescribed. The tremors reduced. The falls and balance issues did not.
That was when we were referred to a neurologist.
The Diagnosis
Progressive Supranuclear Palsy.
Most people have never heard of it. We had not. The neurologist explained it carefully — a rare neurodegenerative disorder, progressive, affecting coordination, movement, balance, and eventually much more. It is different from Parkinson’s, different from Alzheimer’s, different from dementia — though it shares certain surface symptoms with all of them.
The hardest part of the diagnosis was the sentence that followed the name.
There is no cure.
Therapies can help manage the symptoms — physiotherapy, occupational therapy, speech therapy. But they cannot stop what is happening. You are not fighting the disease. You are trying to slow its grip on someone you love. You are buying time, and you do not know how much time there is to buy.
The day I understood this fully — that there was no treatment that would reverse it, that we did not know how far along it already was, that the most honest answer a specialist could give us was he will be as he is, for as long as he lives — was one of the most unnerving days of my life.
What Followed
We began the therapies. Physiotherapy. Occupational therapy. Speech therapy. He attended them with the same stubbornness he brought to everything — asserting, always, that he was perfectly fine. Even as his body told a different story, my father maintained that he was fine. That stubbornness was so entirely him that even in the hardest moments it made me want to smile.
But the disease progressed as it always does.
The falls became more frequent — and harder, because his body would not cooperate with getting up. He never seemed to feel the pain the way you would expect. He would simply try again, try to do things on his own, because independence was not something he knew how to set aside.
His eyes began to look lost — physically present but somewhere else. He was drowsy most of the day. His memory started to wane. My father, who had been sharp with numbers his entire life — good with accounts, the person the family turned to for anything mathematical — no longer knew numbers beyond a thousand.
Watching that — watching someone so full of life and capability slowly drift into a place you cannot reach — is a particular kind of heartbreak. It does not announce itself all at once. It takes things quietly, one by one, and each small loss is its own grief.
What I Wish People Understood
When someone you love has a rare disease, the world around you means well. I know this. But meaning well does not always look like what you need.
We received a great deal of advice about Parkinson’s. About Alzheimer’s. About dementia. Advice offered confidently by people who had heard the word neurological and filled in the rest themselves. Remedies shared. Doctors recommended. Dietary changes suggested.
Progressive Supranuclear Palsy is none of those things. It is its own illness with its own progression and its own cruelties. The advice — however kindly given — was for a different disease.
If there is one thing I hope someone reading this takes away: if you do not know what someone is going through, please do not offer advice as if you do. Ask instead. Listen instead. That is almost always more useful than a remedy for the wrong condition.
What Remains
My father passed away in 2024.
He was 69. He should have had years of retirement ahead of him — the financial optimism finally rewarded, the activity finally chosen rather than required. He should have had more time.
Life is unpredictable. We know this. But knowing it and living it are different things entirely. It is only when someone so close is no longer with us that we understand — properly, not theoretically — how fragile and fleeting it all is. How the ordinary moments we rush past are the ones we will reach for later.
He told me to be brave. To never fear anyone.
I am still working on it, Dad. I think I always will be.
Love you. Miss you. I hope you are well wherever you are.