Parkinson’s Beware: His Creativity is Undiminished - PMD Alliance

It Started With a Teacher 

It was 1967, fourth grade, Mrs. Myra’s class in Union, New Jersey. “It was an assignment given by one of the best teachers I ever had,” John Giannico told me. “We had to write a haiku, a poem.” 

“Almost all my life,” John said, “I still remember the poem. I think that was the start of it.”  

By the time John was in high school, he had unknowingly acquired the myth of being a poet; his yearbook listed him as the guy who was always in the corner with a notebook, writing. “I never really considered myself a poet, but there it was.”  

John Giannico's Dad

John’s dad in Florida

The “Big Dragon” of Parkinson’s Rears Its Head 

It was also around this time, when John was just a teenager, that his dad was diagnosed with Parkinson disease. “I remember him stumbling around the house and sometimes falling, but mostly that controlled fall,” like it was in slow motion. “I got to witness his changes until I moved out at 20 for college.” John would come back each year on college break and find his dad a little worse than he was before.  

It wasn’t always easy to watch his dad progress in his PD. John told me, “As time passed, I watched my dad get frustrated with the disease. He started swinging and resisting, he couldn’t speak what was on his mind.” Looking back, John sympathized with him, understanding now how dispiriting it must have been for his dad to feel like his world was shrinking as well as his power to voice his wishes and move his body the way he used to. 

Like Father, Like Son 

John’s dad’s Parkinson’s was only the beginning of a cycle. Three decades after his dad was diagnosed, John noticed unusual symptoms in his own body and, eventually, got similar news: in his mid-forties, he was diagnosed with PD just like his dad.  

I wondered whether it felt like an emotional blow to receive the news after watching his father live with Parkinson’s for so long. But John insisted it wasn’t. “Having my father as an example was helpful, but I still wished it didn’t happen to him. I missed some years with him that a father-son would normally have.” Was it hard, I asked him, knowing what might be ahead? “No,” he told me“because I saw my father still living and still enjoying life. He made the best of it.” 

Parkinson’s Doesn’t Stop Him from Expressing His Truth 

A retired forester, today John spends his days in his wood shop and writing poetry. He insists he’s just an amateur poet and doesn’t spend hours a day studying the art, but it has been in his heart since Mrs. Myra’s class over 50 years ago. Since then, he has found poetic influences, in the words of Robert Frost and Joyce Kilmer. (After a career working in the woods, John feels a kinship with Kilmer’s poem “Trees” — I think that I shall never see / A poem lovely as a tree / …Poems are made by fools like me, / But only God can make a tree.) But it is truly what he calls “musical poetry” that moves him, finding lyricism in the songs of Bob Dylan.  

John, person with Parkinson's, and Rita Giannico

John and his wife Rita

Poetry is one way John “keeps going,” as he told me—one of the ways he continues to challenge himself and find delight in the everyday. “Don’t despair,” he said, offering advice up to others on a similar path. “There are plenty of things to do and challenges to meet. Maybe your ability to do them may slow, but it doesn’t need to stop…PD doesn’t have to be the worst thing that ever happened to anybody. I’ve had it for 21 years, my father for over 30. There’s a lot of life left after you get diagnosed.”  

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In his poetry, John explores anything that moves him, anything that “takes me out of my normal wheelhouse and puts me in unusual circumstances,” but a few of his verses have been spurred by PD. Read his poem “Usta Could” below:
 

Usta Could 

Well I now have this crazy ailment 

Known to some as just P.D. 

Thanks to Mr. Parkinson 

The first to define the disease 

  

Now I happen to have this condition 

I suspected that someday I might 

Because my father met this big dragon 

Now it’s looking to mess up MY life 

  

It’s revealed by so many symptoms 

Each one unique to treat 

Many have worked to make life better 

For us…but now it’s just got to be BEAT! 

  

So many things have changed for me 

So many quirks…none good 

So many times I say “I can’t do that” 

The way that I Usta could 

  

I can’t keep a fast pace at anything 

At times can’t even work with wood 

I can’t ride a bike or even walk a big dog 

The way that I Usta could 

  

Sometimes I don’t recognize myself 

The way I walk, turn, and shake 

The drool, the falls, the stiffness of limbs 

The insomnia that keeps me awake 

  

I wonder what people say and feel 

When they encounter someone with P.D. 

Do they show compassion or just pity? 

For though I walk like a turtle, I want to scream so loud… “Hey It’s still just ME” 

  

They say I’ll likely get worse with time 

Dementia, delusions, loss of control 

It’s all part of this spiral we know as P.D. 

But I’m NOT gonna sink down that hole 

  

I will live life to the fullest 

Try to taste life as we should 

It’s time to rejoice in what we Can Do 

Instead of what we Usta could 

  

I don’t know the way of the path I am on 

I’m not bitter and do not fear 

I know that my God and my fellow man 

Will come through and always draw near 

  

I don’t want to go down a forgotten one 

My life has much value and good 

So let us continue to love, and be loved 

The way that we Usta could. 

  

For though I walk like a turtle I want to scream so loud “Hey I’m still just ME!”

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