Beat by beat: Living beyond Parkinson’s

Scott had always balanced his career with his lifelong passion for drumming. But one evening in 2019, performing at a gig in Australia, something felt off: a slight tremor disrupted the smooth rhythm in his left leg.

Initially, he brushed it aside. As a trained nurse with intensive-care experience, Scott was no stranger to medical puzzles. About seven years prior, doctors discovered six benign brain tumours (meningiomas), five of which were removed. One remained dormant until it began growing again around the time the tremors started.

Diagnosis in limbo

Scott, then working abroad in Australia, struggled to find answers. Five general practitioners and two neurologists couldn’t pinpoint the tremor’s cause. Returning to Switzerland in early 2020, the COVID-19 pandemic further delayed his diagnosis. Eight months later, a neurologist confidently diagnosed Parkinson’s — until Scott’s informed skepticism prompted more assessments. A three-year journey involving multiple neurologists followed, none able to provide a definitive diagnosis.

“I knew enough medicine to plant seeds of doubt,” Scott recalls, “but apparently not enough to get the right answers.”

The ongoing uncertainty was exhausting. Parkinson’s lacks definitive tests; diagnoses are based primarily on clinical observation and patient history. Scott’s symptoms fluctuated unpredictably, affecting his everyday life and his ability as a Scottish Pipes & Drums Band snare drummer rather than his ability as a rock drummer.

Medication: a lifeline, not a cure

Relief finally arrived in the form of effective medication. “This drug is older than most classic rock songs I play,” Scott remarks tongue-in-cheek. “You’d think we’d have moved on by now.” Still, the medication stabilised his tremors immediately, enabling him to reclaim his musical precision.

Yet, he still finds himself frustrated by a lingering shuffle walk that emerges whenever the medication’s effectiveness wanes. “I can deal with a lot,” Scott says, “but the shuffle walk feels like Parkinson’s reminding me it’s still there.”

A strong medical band

Today, Scott benefits greatly from having a dedicated team of specialists by his side in Basel — neurologists, dieticians, physical therapists, and neuropsychologists. Their goal is clear: slow the progression of his neurodegeneration, maintain his independence, ensuring he remains as physically and mentally fit as possible while staying prepared for the future.

“Having these experts in my corner,” Scott emphasizes, “is crucial for keeping control of my life and staying ahead of Parkinson’s. I’m not just surviving Parkinson’s, I’m outplaying it.”

However, relief came paired with disbelief over global disparities in access to treatment. “It’s shocking,” he says. “With Parkinson’s, it feels like the medical world moves at a very slow pace.” As a pragmatic intensive care nurse, when it comes to research, he believes Parkinson’s is less of a priority than diseases like Alzheimer’s or cancer because it is chronic but rarely fatal.

“You don’t die from Parkinson’s, just with it,” Scott notes. “Maybe that’s why it doesn’t get the spotlight.”

Piecing the puzzle together

Reflecting on his medical history, Scott wonders if a CT scan as a child or his growing meningioma irritating his brain might have contributed to his Parkinson’s symptoms. To further complicate matters, his family history is uncertain as he was adopted as a baby during the period of forced adoptions in the UK. As Scott says, his life would make a great movie. “I wonder who would play me?” he laughs!

Despite uncertainties, Scott remains convinced a cure could already exist. He emphasizes the need for increased attention and resources toward Parkinson’s research. “Brilliant minds are out there,” he insists. “We just need to direct them toward Parkinson’s.”

Scott is encouraged by emerging research highlighting inflammation’s role in Parkinson’s progression. His priorities are clear: “We need a cure first, treatments to halt progression second, and quicker, clearer diagnoses third.”

The beat goes on

Through all challenges, Scott continues drumming with his band, "Milk & Alcohol," a playful nod to the legendary rhythm ‘n’ blues band Dr. Feelgood. Parkinson’s has not stopped and definitely not silenced him.

“Parkinson’s picked the wrong drummer,” Scott jokes, echoing Lou Reed’s assertion: “You can’t beat two guitars, bass, and drums — and Parkinson’s certainly can’t beat this drummer.”