The slow heartbreak of watching illness change the man who raised me.
For a long time now, I’ve carried the thought of writing about the disease that took my dad away. He was 69 when he passed away. Still young to enjoy his retirement life.
It’s a rare illness — one that slowly steals a person’s coordination, movement, and sense of balance. My father, who was once so full of energy and always on the move, was suddenly gone one morning. It’s only when someone so close is no longer with us that we truly come to understand how fragile and fleeting life really is.
It was during the pandemic that my mom started to see visible signs. Dad started falling backwards, dad who used to bathe in a couple of minutes was now taking about 30–45 minutes and most importantly the exhaustion. Mom being sensitive and intuitive was quick to see these changes in him. She had never seen him like this.
As children we realized there is a change in him but thought it could be because of age. But when his steps seemed slow and baby-like, we knew it was time to visit the doctor.
You might wonder why we didn’t have him checked before, the reason being he was very particular about his doctors. He used to consult with just one doctor at Bangalore. He disliked visiting doctors for any health checkup.
When we finally took him to our physician, he ordered for a Brain MRI. The MRI showed multiple clots, and treatment began immediately as the doctor also suspected a stroke. The doctor also indicated early stages of Parkinsons due to dad’s hand tremors. Dad was put on medication and the tremors did reduce with little difference to his falls and balance issues. That’s when our physician advised for consultation from a Neurologist.
The Neurologist diagnosed that dad has Progressive Supranuclear Palsy. It is a disease many are unaware about. It is a rare neurodegenerative disorder. The hardest part? There is no cure for Progressive Supranuclear Palsy. Only therapies can help manage the symptoms — physiotherapy, occupational therapy, speech therapy — but even then, they can only do so much. You’re not fighting the disease itself; you’re just trying to slow its grip on someone you love.
The day I got to know about the diagnosis; it was unnerving because there is no clue when it all began and how far we are into it. How long is he going to be with us? Sometimes even the best specialists say the most painful thing: he will be so as long as he lives.
Well, even with all the therapies we had started him into. A part of his brain cells was slowly dying. He would never feel pain after the many times he fell trying to do things on his own, dad being the independent one. The falls were hard and he required help to get up because his body won’t abide. His eyes seemed lost although he was physically present. He would be drowsy most of the day and his memory had started to wane. Dad who was very good with Math/Accounts now didn’t know numbers beyond 1000. Seeing your dearest one slowly drifting into darkness is the most heartbreaking. As strong willed as dad was, he would always assert that he is perfectly fine.
What made me peeved is the extended family’s ignorance and offering advise for Parkinson’s, Dementia or Alzheimer’s unaware of his actual condition. So, here’s one thing I wish people would consider: if you don’t know what someone is going through, please don’t offer unsolicited advice.
Watching someone you love go through a disease like this causes a kind of pain that’s impossible to put into words — it’s something only those who’ve lived it can understand. Life is unpredictable and we take it a bit too much for granted.
Love you Dad and Miss you. Hope you are hale and hearty wherever you are.