On Attending a Wedding with Parkinson’s Disease
Most of my relatives scattered around the Boyne Mountain Clock Tower with a drink in hand on a foggy evening. We were swaying to the music, celebrating my brother’s new marriage on the perfect Michigan day. Towers of cheese, fruits, and deserts lined the room. Chatter filled my ears. And there was joy everywhere. It spilled from the speakers, our cups, and from our eyes in little droplets of moisture. I wasn’t crying ... I just had something in my eye ...
Stress and PD symptoms
After a delicious ribeye steak, I got up from my table to greet my dad’s best childhood friends. They called themselves "The Devils," because of their notoriously mischievous behavior. It was a title they wore with pride. Together, this group of guys wreaked havoc on the same neighborhood for most of their lives. Even as adults, they were known for being playful, and lively. After they welcomed me into their arms for a strong hug, one of them asked: "Where’d your dad go?"
I looked up, scanning the crowd for his figure. Just moments ago, he’d been sitting at my mom’s side, wearing a smile and enjoying his meal. But I didn’t see him anymore.
"I’m not sure, but I’ll send him your way if I see him," I answered with a frown.
I secretly suspected him of leaving. Before the wedding, he’d warned me that he expected to spend a fair amount of time in his hotel room. He explained that stress exacerbated his symptoms, worsening his tremors and making it more difficult to maintain control over his body.
I was losing my dad to Parkinson’s
I was really saddened of the idea of losing quality time with him. I couldn’t help but be disappointed. Couldn’t he just try harder? Could he time his medications differently or take a break and then come back to the celebration? I was trapped in my own mind, wondering why he was choosing to miss out on such an important event. I was losing my dad to Parkinson’s.
What I didn’t realize is how far removed I actually was from his experience. No. Sometimes he couldn’t "try harder." He couldn’t just think his way through Parkinson’s disease, watching the symptoms dissipate. No. He couldn’t always time his medications differently. Doing so could cause them not to work as intended. Or he could end up severely dyskinetic from too-high a dose. Even if he tried to do things differently, he couldn't necessarily predict the outcome.
Not every symptom is visible
Like most things, my brother’s wedding was a learning experience for me. As a family unit, we’ve been experiencing a lot of change in our lives. And a piece of that relates directly to Parkinson’s.
It’d be naive of me to expect everything to stay the same even as the world continues to spin. Was it greedy of me to want more of my dad’s time even though being in crowds like that stressed him out? Could we have found some sort of happy medium, keeping him around for a little longer, but encouraging him to retire early?
One of the key takeaways for me was that not every Parkinson’s symptom is visible. And that even though I’m familiar with some of the things that my dad might be experiencing, I still don’t know what it’s like to live with Parkinson’s. At the end of everything, I’m really grateful for the time that I got to spend with my dad at the wedding – even if the experience was a little different from what I’d imagined it’d be.
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