Beyond the Tremor: Listening Deeper to the Parkinson’s Experience

By Martha Carlin and Lisa Szymanski

The Aim: To Listen

When we began filming for our Parkinson’s documentary, our aim was simple: to listen. Not just to the symptoms listed in a textbook, but to the daily truths—the messy, beautiful, complicated realities of those living with this condition. What began as a short-term project for an upcoming conference quickly deepened. The more stories we heard, the more we understood: Parkinson’s is not one disease—it’s many experiences, layered into a single name.

One of those voices belongs to a wise and resilient woman diagnosed with Parkinson’s in 2016. Her story was rich with insight—and pain. What she shared was not only about her health, but about the quiet weight of navigating a system that often overlooks the very people it’s meant to serve.

“I always seem to look better during neurologist visits,” she reflected. “Maybe it’s adrenaline. But it doesn’t reflect the real, everyday challenges.”

This was the thread that wove through our entire conversation: what’s visible in the clinic is only a fraction of the full picture. The rest—the fatigue, the digestive complications, the psychological toll, the daily self-adjustments—often remains unseen and, too often, unspoken.

The Layers Beneath: Stress and the Nervous System

She described the time surrounding her diagnosis as one of extraordinary pressure—juggling a PhD, overseeing the construction of a house, and managing family demands. It wasn’t just a stressful week. It was years of accumulated tension, worn into the fabric of her life.

Science is catching up to what many intuitively know: chronic stress leaves a physiological imprint. It alters neurotransmitter activity, increases oxidative stress, burdens mitochondria, and reshapes the gut-brain connection. In our work, we call this the terrain—the internal ecosystem shaped by lifestyle, environment, emotion, and more. And her terrain had been under strain for a long time.

She also spoke of personal grief and family estrangement, adding another layer to that terrain. These emotional stressors, though rarely part of medical intake forms, are deeply entwined with healing and progression.

Inheritance and Exposure: A Father's Work, A Daughter’s Reality

Another powerful theme arose during our conversation: environmental exposure.

Her father was an orchardist. For years, he worked closely with fruit trees, regularly spraying them with pesticides. There was little awareness then of the long-term risks. He died relatively young of cancer—a loss that remains etched in her story.

Now, years later, she lives beside a pea farm where chemical spraying continues. Planes fly overhead in the summer, dispersing pesticides across the fields. She recalled walking outside one day and tasting something bitter in the air.

“It just hung there, on my tongue. I could feel it before I even saw the plane.”

It’s hard not to see the continuity—the thread of chemical exposure stretching from childhood to now. These aren’t isolated moments. They’re part of a larger, often invisible burden carried by many, especially in rural communities. At The BioCollective, we’ve long been focused on understanding how environmental toxins like glyphosate and legacy pesticides disrupt the microbiome and neurological health. Martha’s Quest was started to begin to highlight these connections.  But even beyond the science, there’s a human reality here. Exposure leaves more than a chemical trace. It leaves memory. It leaves grief. And it deserves our attention.

Self-Advocacy After Surgery: The Gaps in Post-DBS Care

She also shared her experience undergoing Deep Brain Stimulation (DBS)—a major turning point in her journey. While the surgery brought symptom relief, what followed was far more complicated. There was no coordinated plan from the surgical team or her neurologist to adjust her medications—despite the well-known fact that DBS often reduces the need for them.

“I had to manage it on my own,” she said. “I kept asking for help, but there was no real process in place.”

This isn’t an isolated story. We’ve heard it echoed in many interviews: the post-DBS period is one of immense potential and vulnerability. Yet, many patients are left to navigate this terrain without holistic support, care coordination, or clear communication between specialists.

Surgery may be clinical, but recovery is deeply human. And we need systems that reflect that truth.

Daily Choices, Quiet Victories

Despite these challenges, she’s carved out space for healing through daily practices: strength training, swimming, cycling—movement not as a cure, but as a way to connect to her body again. She works with a trainer to support body awareness, a common challenge for people with Parkinson’s.

She also spoke of complex dietary sensitivities: reactions to protein, legumes, sulfites. The interplay between digestion, medication, and neurological function is one we’re only beginning to understand. We spoke about possible gut issues linked to nickel, pesticide residues, and how certain foods interact with medications.

These aren’t just “lifestyle tweaks.” They’re quiet victories—acts of self-knowledge and resilience that shape each day.

A Call for Research That Reflects Reality

One of the most profound parts of our conversation centered on the need for better research—research that reflects the real lives of people with Parkinson’s.

She described finding relief through a repurposed medication typically used for ADHD, but access was limited. The clinical trials hadn’t caught up to the lived experience. She asked why so many studies fail to reflect the symptom clusters, co-occurring conditions, and life contexts of real people.

“We need studies that reflect the real world. Not just the ideal conditions of a trial.”

She’s right. It’s time for a more human-centered approach to research—one that honors lived experience as data, and values patient insight as part of the scientific process.

Honoring the Full Story

In listening to her story, what struck us most wasn’t just the complexity of her condition—it was the clarity of her self-awareness. The way she weaves together family history, environmental exposure, personal intuition, and scientific curiosity. The way she continues to search, question, and adapt.

Parkinson’s is often reduced to its most visible features. But healing—and understanding—requires us to look deeper. To listen more closely. To ask better questions.

Her story reminds us that we are not just treating a disease—we are walking alongside people, each carrying a story far larger than a diagnosis.

Thank you for walking this path with us. If this story resonates with you or brings your own journey into sharper focus, we invite you to share, reflect, and join the conversation. Together, we are creating a fuller picture—one story at a time. We want to hear your voice!

With gratitude,

Martha and Lisa

Lisa Acee Szymanski is President and a founding member of Resolve Parkinson’s. A lifelong educator and advocate for vulnerable youth, Lisa has spent her career supporting those whose needs are often overlooked—whether coordinating crisis intervention programs, guiding girls in residential care, or serving as an Educational Surrogate Parent for the state of New Hampshire. Following her own Parkinson’s diagnosis, Lisa turned her skills in advocacy, storytelling, and systems navigation toward the Parkinson’s community. She now brings both professional insight and personal experience to her leadership at Resolve. Lisa is also co-creator, with Martha Carlin, of the Voices of Parkinson’s documentary shorts, amplifying real stories of those living with the disease. She lives in Lee, NH, with her husband and three children.