We Thought Dad was Being Lazy … I Wish Now We’d Understood His Rare Disease

It’s been 12 years since my father lost his fight against Progressive Supranuclear Palsy (PSP), a neurodegenerative brain disease that till today has no known cause, treatment or cure.

He was just 67.

I wish I could reset his last years and do more for him, but at the time we had little guidance and support to understand his condition.

It was like navigating uncharted waters. The confusion over diagnosis, ongoing battles with ever-changing symptoms, the relentless uncertainty … it was a rollercoaster that extended far beyond the medical condition… It tore into every aspect of our lives, impacting relationships, emotional well-being, and even financial stability.

PSP is extremely rare, we learnt later. The symptoms mimic Parkinson’s, making it difficult to diagnose. PSP occurs due to damage to brain cells. These cells control our nerves, which ultimately control the muscles.

It’s amazing how many muscles we don’t even think about until we can no longer control them!

Imagine the horrors of a person prisoner in his own body, unable to communicate his pains, emotions and confusions. Over the years we helplessly watched Dad’s executive functions slip away one by one, until he was confined to bed, unable to move, talk, swallow, or even blink.

Imagine a life without blinking!

It all started with inconspicuous signs — a subtle imbalance, a deadeye stare and general apathy and irritability. Little did we know that these were just the beginning of a spiral into a world of helplessness.

Imagine the struggles of a visibly healthy person with no peripheral vision (we learnt later regular eye specialists can’t diagnose the problem) or with severe balance problems (this again, can’t be diagnosed by orthopedics), being repeatedly dismissed by doctors for not putting enough effort.

Soon, the family joins in.

Imagine a person’s horrors when he can’t remember basic things like how to take a bath or button up a shirt. Or suddenly realize that he can’t read, write, or frame a conversation. He probably thought he was losing his mind.

He needed support, but we thought he was being lazy. He became withdrawn; we called him moody. His eyes seemed unfocused; we thought he was drinking.

As it is, the world of communication was fast shrinking for him, and we in our ignorance made shrink it faster.

My father was a dynamic go-getter. A village boy with a humble background, he rose from the ranks to become one of the senior-most executives in India’s top industry chamber. He had travelled all over the world for work and was extremely well-read. A loving husband and father, he was progressive beyond his times.

As journalist siblings, we picked up our interest in history, current affairs, sports and movies from him. As children, we almost hated him when he bought us books during festivals while neighbors had new dresses and toys. “Books are your best friend,” he would say. Something he diligently followed through with his grandchild (my kid) early on in the kid’s life.

Heated dinner table discussions over national and international affairs, or the fate of the Indian cricket team were a regular in our house. “Let’s agree to disagree” he would say in his gentle voice when the argument got too heated.

That was annoying, you bet!

From there to the days when he wouldn’t open his newspaper bundle (he still demanded his 5–6 newspapers) to the completely blank look on his face in his last days. It was heart-wrenching to see the person we once knew to what he had become.

At times, he would want to talk. But what did he just say? We didn’t know. For, it was impossible to make sense of his mumbles.

When we spoke to him, he stared back. Did he understand what we just said? We didn’t know.

Sometimes he nodded, often he didn’t. His eyes were wet always, tears rolling down his cheeks due to no blinking.

Or was he crying? We didn’t know.

He clutched at our hand when any of us sat next to him. His eyes were blank, his face a mask. He couldn’t smile, couldn’t talk, couldn’t blink and was dependent on us for everything.

Of course, blinking and smiling were things we couldn’t do for him.

But I am sure there were things we could have done better if only we had a little guidance and support.

And guidance and support we had very little.

Over the years we consulted countless doctors, including at top medical institutes in India, even in the US. The verdict was always the same — either “he is not trying”, or “you are labelling an elderly parent a mental case”.

He spent two months in India’s foremost neurological institute, where a whole battery of doctors didn’t even come anywhere close to a diagnosis. His memory was intact, so Alzheimer’s was ruled out. Parkinson’s medicines were not working.

It took for Dad to be completely bedridden for them to accept he had a genuine problem, but they were clueless what it was!

We brought him home. By then, he was totally bed-ridden, placing the major responsibility of his care on my mother, who was already struggling with her own health issues. We siblings (along with our spouses) chipped in whatever time we could take out outside work. Our days were chaos — either consulting with specialists, rushing for tests, attending to his basic needs, picking up an extra job or two because medical bills were going through the roof.

I always told my child to “come later, mom is busy”. He was just 8.

That one year was a blur!

The diagnosis of PSP came barely three months before Dad passed away. And suddenly every piece of the puzzle fell into place — every issue that had been bothering us for years.

But we learnt fast that PSP is a horror even post-diagnosis because there is no cure. The worst is the disease doesn’t take away the person all at once but kills them bit by bit, and you mourn the loss each time. Like we always said Dad is better today because tomorrow will be worse — he will lose the ability to do yet another thing.

It’s been 12 years, but the misgivings remain as fresh.

Looking back, I think counselling would have helped us cope better. Sadly, a decade ago, mental health didn’t get the kind of attention. Mom was never the same after he passed away. She became withdrawn, neglected herself, and eventually succumbed to the weight of guilt within a couple of years.

The rest of us chose to compartmentalize and move forward. The demands of daily life, from paying bills to raising children, took precedence.

After years of keeping our journey locked away, I find the courage to open up. Our increasing awareness and understanding of mental health, particularly with the pandemic encouraging a more open dialogue about these challenges, make it a bit easier. It’s crucial to recognize that feeling helpless is okay, seeking help is okay, and above all, talking about the related mental health struggles is also okay.

Globally, over 400 million people are affected by rare diseases. In a world where many of these diseases are not widely understood, understanding, empathy, and a shared commitment can make the journey a bit easier.