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Real Talk from Participants

A Privilege to Participate


It makes sense that Diane Winiarski, 65, is over-the-top enthusiastic about participating in Fox Insight and its accompanying collaboration with 23andMe. Fox Insight aims to gather real-life information from people with and without Parkinson’s disease (PD) to advance research and inform the development of potential new therapies. Winiarski understands this to her core. Trained as a registered nurse, the Great Neck, New York, resident eventually segued into a position as an advocate for research participants. “I was on call to answer patients’ questions and clarify the study requirements, and act on any complaints, among other things,” she says.

Now, Winiarski is a research participant herself, since her diagnosis with mild PD in 2016.  As with many people, the diagnosis was a shock. “I noticed I was falling more than I ever had in my life — stepping off curbs the wrong way or tripping over cracks in the sidewalk,” she says. Perhaps because of her medical training, she says she had a “gut feeling” that her problem was neurological and not simply due to clumsiness. Still, she wasn’t expecting to hear the words Parkinson’s disease either during her first visit to a neurologist, who noted that when she walked, she wasn’t swinging one arm as much as the other, a common sign of the condition. Six months later, she saw a movement disorder specialist who confirmed the initial diagnosis, telling Winiarski that she was in the very early stages of the disease. “I was completely numb,” she says.

Three years later, Winiarski’s condition remains mild, though she sometimes feels distressed by symptoms that occur while she is sleeping. “I’ve heard them referred to as ‘acting out of dreams.’ If I dream that I am riding a bicycle, I will wake up making those movements, which is very disruptive to my husband’s sleep. And if I’m having a nightmare that someone is attacking me, I’ll sometimes wake up and be punching him—that’s stressful.”

Meanwhile, Winiarski diligently logs these symptoms and any others in the Fox Insight surveys she receives. “As a former researcher, I was immediately drawn to Fox Insight and the collaboration with 23andMe. Knowing the genetics of people with Parkinson’s can lead to new research,” she says.

One reason she takes logging her symptoms so seriously, she says, is that there are so many ways the disease manifests itself. “It’s not just a tremor. It’s a rainbow of symptoms, which brings its own challenges to scientists. What I contribute may just be a tiny, tiny piece, but with enough tiny pieces, we will eventually get the whole puzzle. That’s why I really think it’s a privilege to participate. And with Fox Insight, it couldn’t be any easier.”

To learn more or sign up for the study, visit Fox Insight.

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