Not every day was a good Parkinson’s day or a bad Parkinson’s day
My Uncle Brandon's disease didn't deserve top billing in every scene, we learned
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While my family and I discussed medication schedules, doctor appointments, and what foods might work best with my uncle Brandon’s Parkinson’s disease, he sometimes had a much more pressing question: “What’s for breakfast?”
Usually, the question came with a smirk and his famous cackle, as if to remind us that while we were busy managing all things Parkinson’s, he was trying to figure out whether somebody was making eggs.
We had become somewhat hyper-vigilant about Uncle Brandon’s safety, stability, security, and health. That’s admittedly a lot of S’s, but all of them mattered to us. We watched his gait, kept track of medication changes, paid attention to his eating habits, and tried to anticipate problems before they happened. It all came from love, but somewhere along the way, Parkinson’s had trained us to constantly look for what might go wrong. Uncle Brandon, meanwhile, was often just trying to live his life.
Some ordinary days
On certain days, that meant heading to a friend’s house, catching a NASCAR race, or enjoying his newer interest in horse racing and the Kentucky Derby. He might talk with his nieces and nephews back where he grew up, pick up a tool to stop a dripping sink, head to the store, or help me with something involving my car.
Every once in a while, everything seemed to cooperate. His movements might have been easier, his tremors less bothersome, and he could get through dinner without repeatedly having to maneuver food back onto his plate. Other times, he was accusing somebody of stealing his hat, joking that he had a reputation to maintain and couldn’t have people seeing what was going on underneath it.
Nothing extraordinary happened. Eventually, I realized that was precisely what made those days extraordinary.
I don’t think I understood at the time how closely we’d begun monitoring what constituted a good day for him. We had become so accustomed to expecting the unexpected, preparing for the worst, and praying for the best that when the best arrived, it almost felt like unfamiliar territory.
Sometimes we’d even announce it. “Looks like you’re having a good day today, Unc.” He’d shrug his shoulders, stating, “I reckon.” Then he’d grab the remote and continue with his evening.
His nonchalant response eventually made me wonder whether I needed to announce every calmer tremor or point out every time he seemed to be moving better. Maybe he didn’t need a play-by-play of how well Parkinson’s appeared to be behaving. Sometimes I could just let the man have his Tuesday.
It wasn’t always easy. In the back of my mind, I wanted those easier days to last. Parkinson’s could be unpredictable, and after spending enough time watching someone you love navigate those changes, it’s difficult to completely turn off that awareness. Still, we gradually learned to stop grading every day solely by how Parkinson’s behaved.
Sometimes Uncle Brandon even had a bad day that had absolutely nothing to do with Parkinson’s. Maybe something around the house wasn’t working. Maybe somebody got on his nerves. Maybe he was simply tired. Like everyone else, he was allowed to be irritated, bored, lazy, amused, or not in the mood. Not every emotion needed to be examined through the lens of his disease.
Parkinson’s was an unwanted presence in Uncle Brandon’s life, but it didn’t deserve top billing in every scene. There were days when his symptoms demanded our attention, but there were others when nothing remarkable happened.
He woke up. He ate breakfast. He talked to people he loved. He watched television. He tinkered with something. He cracked a joke. He probably complained about something. Eventually, the day came to an end.
Over time, I stopped thinking of those moments as Uncle Brandon’s good Parkinson’s days. They were simply good days. And even when they weren’t particularly good, they could still be ordinary days: frustrating, funny, productive, lazy, or uneventful. They were human.
Some days, he simply got to be Brandon. And ordinary had become pretty wonderful.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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