Our Research Journey: Taking Action Together

Betsy (left) pictured with her wife Lisa

"I Just Wanted to Feel Like I Was Doing Something to Contribute"

For much of her life, Betsy has been the person others turn to for support.

As a social worker, chairperson of her school system's mental health department, mother, and wife to Lisa, she spent decades helping people navigate challenges. When she received a Parkinson's diagnosis in March 2025, rather than stepping back, Betsy and Lisa began learning more about the disease and exploring ways to get involved.

"I really wanted to be on a path of looking to see if there was a potential cure or something that could slow the progression," she says.

Learn more about joining a research study and find the right fit for you.

Signs Hiding in Plain Sight

Betsy's symptoms began over five years before her diagnosis.

Following breast cancer treatment, including surgery, radiation and hormone therapy, she experienced changes that were easy to explain away. At the same time, she was balancing a demanding career as a social worker and family responsibilities with her wife, Lisa, whom she married in 1992.

She initially noticed changes in her balance and weakness in her legs. Later, her handwriting worsened, her voice became softer, and tasks at work became increasingly difficult.

"I just kept writing things off as stress," she recalls.

Eventually, the changes contributed to her decision to retire after more than 30 years in the field.

Although her primary care physician prepared them both for the possibility of Parkinson's, hearing the diagnosis confirmed was still difficult.

Turning Toward Research

Research wasn't entirely new to Betsy.

Before her Parkinson's diagnosis, she had experience serving as a consumer reviewer on federal research panels. She credits this in part with giving her insight into how research moves from concept to patient impact.

Two weeks after receiving her diagnosis, Betsy and Lisa drove to a Parkinson's event in Buffalo, New York. The event introduced them to a broader Parkinson's community and opportunities to get involved in research.

They attended additional Parkinson's education events, participated in PD GENEration and explored research opportunities through conversations with researchers and study coordinators in their area. She also completed screening for PPMI, The Michael J. Fox Foundation's landmark study working to better understand Parkinson's disease and its progression.

Researchers are looking for people aged 40+ with and without Parkinson's disease to take a smell test. Help scientists learn more about PD risk and develop new treatments.

Not every opportunity was the right fit. Betsy was not eligible for every study she explored, but they persisted to look for ways to participate.

"I just wanted to feel like I was doing something to contribute," she says.

Eventually, Betsy and Lisa learned about the NeuLark study through researchers at the University of Rochester. After initial screening and testing, they were excited to learn Betsy qualified and became the first participant enrolled at her local study site.

Today, her participation includes daily smartphone-based activities, regular clinic visits, neurological assessments and ongoing communication with the study team.

More Than Research

For Betsy, participating in research has provided more than a chance to contribute to science.

"It gives you a whole other team to follow you and brainstorm with," she says.

The relationships she has built with study coordinators and research staff have become a welcome source of support. She sees the study team regularly and appreciates the close communication throughout the process.

Research is only one part of how Betsy and Lisa stay engaged with the PD community. She has participated in the Speak Out speech program, joined a Parkinson's choir, attended boxing classes, taken part in a pickleball study and participated in exercise and physical therapy programs designed for people living with Parkinson's.

Through these experiences, they have connected with others living with PD and found a supportive community.

Looking Ahead

Betsy hopes research will lead to treatments that slow Parkinson's progression and provide more options for future generations.

She believes there are many paths that may lead to better outcomes and that progress depends on people being willing to participate in research.

Research, Betsy says, is not only about advancing science. It's also about helping build a future with more answers, more options and more hope for people living with Parkinson's.

Betsy and Lisa also hope that sharing their story helps others see themselves reflected in Parkinson's research and the broader Parkinson's community.

• Dillon Woodward

  Patient Engagement Specialist