The following are (some of) my reflections, perspectives and insights born out of my father’s “Parkinson’s challenge.”

Click here to see Phil’s speech: My Parkinson’s Challenge

As with every other human experience, we do not live in a vacuum. We live within an interconnected tapestry of interactions. As Rick Lavoie says, families live on a waterbed: when one person rolls over, we feel it. In that spirit, I am experiencing my father’s Parkinson’s journey, and I offer the following reflection. Partially to share, but mostly for my own process to put thoughts and feelings into words.

Uri

All the world's a stage, and all the men and women merely players… and one man in his time plays many parts. (William Shakespeare)

ACT I - FEAR

As kids, my brother and I played parts in the school plays. I don’t remember auditioning for one part or another, but I do recall my stage fright. I knew the lines, I knew where to be, and I knew the emotions of the scene, but when I stepped onto the stage, and saw the audience, I cowered back. I pulled back, frozen by fear and unease. The vulnerability was gripping. I was handed my part, my time, my lines; but it was so hard to get into character.

I remember how my parents coached me through it.
(As an aside, here I am years later and my wife and I help our kids through similar stage-fright situations, including recitals, performances, speeches and so on. Dreadful as it may be in the moment, I believe it’s a really healthy part of growing up.)

Even though I never performed on Broadway, I did it. I made it. My mother helped with endless encouragement and devotion to practice with me. And my father tapped into his highschool love of drama and brought out his theatrical magic.

You may not know it, but before his career in speech-language pathology, my father loved to perform on the stage. Ever since then, he finds opportune moments to tap into his love of the stage. And preparing for our school plays was one of those opportunities. He helped us prepare for our performances with his trademark ability to create calm, comfort, and instill in us (enough) confidence to step onto the stage and play our role.

ACT II - COURAGE

In the past few years, my father has been living with Parkinson’s. At first, there was denial. Then there were feelings of devastation. And then…

When we were in Chicago for the National Stuttering Association conference, he was contending with shaking hands, rattling glasses. At the same time, he was roller-blading with me as I ran and bladed along Lake Michigan. He was putting his hands in his pockets to hide the tremors. And at the same time, he started opening up and talking to close friends about his Parkinson’s.

ACT III - CHOICE

In the latest social research, we see how “identity” is a performance.

Our narrative, our behaviors and our overall “openness” truly shape the experience.

images of Phil’s “Parkinson’s challenge.”
Living. With Parkinson’s.

My father is NOT a “Parkinson’s patient.”

He is my father. A husband, a brother, a grandfather…

He is a world-class professional. A therapist, a friend, a volunteer,

He is living. Aging with wisdom. And the age that gives wisdom, also comes with changes. And the changes force some response…

Another one of my father’s pearls of wisdom is this:

What is difficult can become easier. What is easy can become more difficult.

ACT III, SCENE II, Another Take

Life unfolds in unpredictable ways, non-linear paths.

There’s a saying among millennials, “YOLO.” It’s an acronym: You only live once - Y.O.L.O.

But YOLO is not true! We don’t “only live once.”

We only die once. We get a chance to LIVE every day!

Perhaps, think of the days like a movie set. Each day is another “take.”

Take one. Take two. Take three.

Another opportunity to do it better than before. Progress is built upon the failed attempts of yesterday, giving birth to lessons and experience for today. And the most important scene, is the next one. Life invites us to step out onto the stage of our life, and play our part.

ACT IV - ACTION

Today, my father is (in his words) living with his Parkinson’s challenge.

He’s actively caring for his sleep, nutrition, exercise and medical care. (Including boxing several hours, multiple days per week!)

And remarkably, there he is. While Parkinson’s is a degenerative condition, my father is experiencing a reversal of several symptoms, and he has more energy and youthful spirit than he did months ago. Truly he’s turning back the clock to his junior high school years when he loved to act, and his high school years when fell in love with my mom, his life-long partner in the ring.

THE NEXT ACT

For the fortunate ones in his audience, he’s showing us how to step onto the stage and inviting us to muster the courage to play our role.

And through it all, there’s my mom, providing the encouragement and devotion to practice; just as she always has for all of us.