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On Father’s Day: How my daughter’s essay shed a new light on my Parkinson’s diagnosis

 

There comes a point as a parent when you realize your children sometimes have as much to teach you, as you have to teach them.  

That revelation came to me recently when I was confronted with a personal health crisis. The diagnosis, when it was pronounced, had the ring of a prison sentence: Life with Parkinson’s disease.

It was a conclusion I had been dreading.

The lightest of trembles

For months I’d been meeting with doctors, undergoing a bevy of scans, ‘grams and diagnostic tests. 

I had walked straight lines down hospital hallways under the discerning eye of a neurologist. With outstretched arms and closed eyes, I repeatedly touched my nose with my finger — done everything short of patting my head and rubbing my tummy. 

My sobriety was unquestioned, but what was the source of the flutter I’d first felt in my hand months before? It was the lightest of trembles, little more than a shiver really. 

‘It was the lightest of trembles, little more than a shiver really. But it wouldn’t go away.’
– Harry Forestell

But it wouldn’t go away. 

Over the ensuing months it crept up my arm making writing a struggle, turning my normally graceful, looping script into a scribble of repeated w’s. 

Typing became a test of two-finger endurance. Fastening shirt-cuff buttons was like wrestling with an octopus. Even walking became a self-conscious act in which I had to think of how to swing my arms. 

My body was rebelling, refusing to do what it had done obediently, unconsciously, for a lifetime.

I felt betrayed. 

A degenerative disorder

Parkinson’s disease is a long-term degenerative neurological disorder. 

The cells that produce dopamine, a neurotransmitter crucial for the brain to get messages to the muscles, die off. 

Over time, movements — from walking to swallowing — become more difficult, while undesired movements, tremors, become more pronounced. A host of other symptoms appear as the disease progresses with age. 

Harry Forestell

Harry Forestell is the host of CBC News: New Brunswick at 6. He

At home, it was becoming increasingly difficult to ignore the tremors. 

My daughters, 10-year old Erin and 12-year old Patricia, could see when I was tired or stressed that my hands would shake.

With a diagnosis inescapably confirmed, the time came for a family huddle to explain what was happening.

‘We explained it all to Erin and Patricia who, though worried, seemed to accept this new wrinkle in their lives with good grace.’
– Harry Forestell

We keep no secrets in our house, but the challenge here was to explain, in hopeful terms, a threatening medical condition that would only get worse.

My doctors had assured me my prognosis was good but that over time, the symptoms would inevitably worsen. 

We explained it all to Erin and Patricia who, though worried, seemed to accept this new wrinkle in their lives with good grace. They asked a few questions, appeared thoughtful, offered hugs, and life in our household carried on.

“Awesome job,” I thought. “We’re great parents!”

Deeply affected

It was only months later that I understood just how deeply affected both girls were by the news.

It dawned on me when Patricia asked if she could use my diagnosis as the subject of an essay about life’s turning points. 

Weeks later she handed me her essay. 

Patricia’s writing captures her shock and ensuing struggle to process the sudden uncertainty of the future. My diagnosis rocked her world, and her struggle to process it mapped almost perfectly my own struggle to come to terms with it in the preceding months.  

‘My tremors were an earthquake for us all, but her optimism was the very tonic I needed. ‘
– Harry Forestell

Reading her essay was a revelation that what was happening to me was also happening to us, to our whole family. 

My tremors were an earthquake for us all, but her optimism was the very tonic I needed.  Patricia could see past the threat to what lay beyond — a relationship that could weather any storm.  

Suddenly Parkinson’s doesn’t seem so scary.

The Earth Shaker

By Patricia Forestell

“Delay is the deadliest form of denial.” (C. Northcote Parkinson)

It’s funny how quickly the smallest tremor can transform into an earthquake. How a seemingly harmless thing can so quickly evolve into something perilous. When my father started to shake, I didn’t pay it much attention. In my 12-year-old mind anything could be cured. I, and the rest of the world were invincible. When his quiver was diagnosed as an essential tremor nothing changed. My idealistic world was intact; everything was perfect. But, after years of tests, exams and changed medications, a discovery came to light. This prognosis transfigured my father’s little tremor into an earthquake that demolished everything I thought I knew.

On the day that my parents told the news to our family, Parkinson’s was the farthest thing from my mind. At the time, I wasn’t even certain of what it was. When my mother called me into my sister’s bedroom, it was strange, but I thought nothing of it. Carefree and happy, I twirled around in Erin’s green desk chair, laughing at my parents and younger sister all squished together on her small bed. Then my father started to talk. As I listened to him explain in a serious tone, a lump seemed to lodge itself in my throat. I had an idea of where he was going with this. I tried to swallow while I listened, the backs of my eyes prickling.

“I have a disease called Parkinson’s,” my father said solemnly and the iron ball in my throat dropped to the pit of my stomach. Everything that my parents were saying was drowned out by the ringing in my ears. The pink walls of my sister’s bedroom spun around me, the rest of the world just smudged colours. Panic started to engulf me; choking me in desperate fear. I sat there, just watching my family as they started to come back into focus, like a camera re-adjusting. My face felt frozen, and I held tears back, knowing if I cried it would only frighten Erin.

I watched as my father’s lips moved in a futile attempt to reassure us. “We have options.” My mother told us, “Your father is a prime candidate for medical trials and Deep Brain Stimulation.” My heart stopped for a second, I just sat there, waiting for her to continue. After a moment of silence, I stood up and stumbled out. As soon as I made it out the door – and eyesight – I collapsed against the wall, breathing heavily. I panted, trying to catch my breath and hold back tears simultaneously, allowing myself a moment of weakness. Taking a final deep breath, I got up, staggered to my bedroom and grabbed my laptop.

Hours of research later I found that my father’s only options were medication – which only works for so long – and Deep Brain Stimulation, a surgery that entailed my father’s brain being open to the world and probed, while he was awake. I sat and let it sink in, absorbing everything I knew so far. My father had an incurable neurological disorder that would, bit by bit, take away his ability to control his limbs. His tremor had started to quake.

My father’s diagnosis shook the ground beneath me, crumbling the stability that I craved. But, over time, as I have gained some perspective, I’ve realized that my father’s diagnosis could have been worse. He still has his memories, his health, and for now, his main motor functions. Parkinson’s will eventually steal his ability to walk, and control his body. The disease has taken things from my family, but it has also taught us. It has shown me that my time walking and running with my father is precious and limited. Every moment I have with him that would have previously been an everyday occurrence, now holds a special meaning for me. Through this journey with him, I have discovered that his Parkinson’s is not a sentence to the end of his normal life, but rather a challenge, an invitation to see the simple joys that I’ve previously been missing. It has been an awakening to how much I take for granted, and how much my relationship with my father truly means to me.


 

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