Christmas hung in the air, smelling faintly of cheese platters and wine. Dad and I had decided to attend a Rock Steady Boxing Christmas party. On the way over, he joked that it would “be a quick Christmas party because everyone’s drugs [would] wear off in a…
Shaking Things Up
— Mary Beth Skylis

A few years ago, I accompanied my dad, who has Parkinson’s disease, to a neurology appointment to observe how his doctor interacted with him and assessed whether his deep brain stimulation hardware needed adjustment. The doctor asked if he was taking the recommended dosage of levodopa at the scheduled…

My sister, Dad, and I waited in the doctor’s office before Christmas for his deep brain stimulation (DBS) appointment. Dad underwent DBS last fall, and it’s time for a “tuneup,” as he likes to call them. I imagine his doctor with a wrench in her hand, manipulating Dad’s brain…
Dad used to tell us that he has two sets of clothes: a normal set and a set of “skinny clothes” that emerge when he gets sick. Dad was diagnosed with ulcerative colitis in his 30s, and the illness caused him to lose a startling amount of weight. He was…
Chronic illness is expensive. It costs money, time, and peace of mind. Whether you’re sifting through your worries or counting the pennies in your pocket, illnesses affect all avenues of life. Before the symptoms of a disease appear, one may go about daily life unencumbered…
I wonder if my dad’s battle with ulcerative colitis is linked to his struggles with Parkinson’s disease. Because of a series of medical complications, he’s missing his colon, a vital part of the digestion process. This affects how he digests food and medicine, which in turn affects his intestinal…
Writing about Parkinson’s disease is a cumbersome game. I’m a journalist in my regular life, so I’m no stranger to telling complicated and emotional stories. But my lens is usually focused on others. I tell stories about accomplished athletes and faraway places that don’t affect me directly. But Parkinson’s disease…
Dad has always loved films about fighters. There’s an allure to watching an underdog rise to fame. Maybe he’s mesmerized by the strength of characters like Rambo and Muhammad Ali because he hopes there’s a fighter in him as well. He won’t define himself by his circumstances or sink into…
James Parkinson changed the course of medical history when he first described the “Shaking Palsy” in 1817, at a time when little was known about neurological and degenerative diseases. I decided to delve into the history of the disease to see how it might relate to modern medical practices.
The sun peeks over the horizon, and before long Dad is up and at it. It’s a boxing day, and he wants to time his medications to optimize control over his Parkinson’s symptoms. The other part of his routine revolves around his morning stretches. Muscle rigidity is the…
Parkinson’s disease introduces challenges into your daily life. Tasks that were once second nature become more complicated when you’re managing symptoms like tremors and dyskinesia. Fortunately, product designers are coming up with simple, adaptive solutions that can make living with Parkinson’s a little easier. Introducing some adaptive products into…
Deep brain stimulation (DBS) can affect both cognitive and motor symptoms in Parkinson’s patients who undergo the surgery. The procedure gives hope to those who are substantially inhibited by tremors and dyskinesia — people like my dad. After doctors determined he’d make a good candidate for the…
At the top of a Colorado mountain, I realize that my phone has just a single bar of service. I drop to the dusty ground, frantic to contact my dad. He’s going into surgery for deep brain stimulation (DBS) today, and I haven’t had the chance to tell him…
More than 10 million people are living with Parkinson’s disease around the world. While this number seems shocking, it also means that we have a lot of people fighting for change, relief, a cure, or a solution to some of the difficulties that Parkinson’s yields. Research and interest in…
I’ve always been a bookworm. From a young age, I’d collect stacks of dusty literature at the library and vanish in between the pages. Stories helped me learn about the complexities in life. I was often attracted to odysseys, in which an unassuming character went on a quest to learn…
Dad’s dyskinesia is worsening at a startling pace. When he doesn’t take his medications, he’s nearly immobile. And when he does, dyskinesia wreaks havoc on him. At a loss for options, we’ve been searching for alternative solutions to assist in the management of his PD symptoms. A procedure called…
Harnessing the Power of Music
A proud, black piano stands in my parents’ living room. It’s the foundation of our home. From behind the sleek mahogany panels, fury, sadness, and happiness express themselves without judgment. My operatic brother sings his troubles away. My mom, a lifelong piano teacher, often alludes to the power of music…
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