How One Hilton Head Woman Turned Years of Caregiving Into a Mission for Others

By Leigh Cocanougher

Susan Mosher

After Susan Mosher’s husband Michael was diagnosed with Young-Onset Parkinson’s in 1999, she did what countless care partners before her have done: she figured it out as she went. She scoured the internet, attended webinars, read everything she could find, and leaned hard into the steep learning curve of caring for someone through a progressive neurological condition.

What she didn’t expect was that two decades of experience would one day make her a guide for others walking the same path. Today, Susan is a tireless advocate in the Hilton Head community, determined to make sure no one faces Parkinson’s alone.

“I don’t want to waste the experience I gained. I want to use it for good,” she says. 

A Long Road, Honestly Walked

Although Michael had suspected for about a year that something was wrong, the official diagnosis of Parkinson’s at age 43 still came as a shock. For Susan, the moment remains vivid. “I still remember that first appointment and all the emotions,” she says. “There was some crying. But from then on, he never complained. He never said, ‘Why me?’ Not once, through the whole journey.”

In the years that followed, Parkinson’s gradually tightened its grip, and Susan’s role as care partner grew alongside it. What began as small adjustments eventually became full-time responsibility, especially after 2019, when Michael suffered a serious fall that left him with five broken ribs and pneumonia. From then on, managing his care became her primary focus. She gradually built what she now calls her “care partner toolkit,” a set of practices that helped her stay grounded through years of uncertainty. Therapy, walking in nature, meditation, regular exercise, and short respite trips all became essential.

Just as importantly, she learned to recognize her own limits and respond to burnout before it became overwhelming. Eventually, that meant bringing in home health aides and creating a rotating night-shift schedule to ensure sustainable care for both Michael and herself.

Finding Support through the Davis Phinney Foundation

About a decade ago, Susan discovered the Davis Phinney Foundation for Parkinson’s (DPF), and it marked a turning point in her Parkinson’s journey. Founded by Olympic cycling champion Davis Phinney, the

Susan and Michael Mosher

nonprofit has built a reputation for focusing not just on managing Parkinson’s, but on living well today. Right away, the emphasis on exercise, community, and practical resources resonated deeply with Susan.

DPF’s monthly care partner meetup, in particular, offered something she hadn’t found elsewhere: validation. “There were so many conversations with different specialists that confirmed I was on the right track,” she says.

After being invited to speak as a guest panelist on long-term caregiving, Susan applied to become a DPF Ambassador. The role felt like a natural next step. As an Ambassador, she participates in monthly meetings and collaborative roundtables with other volunteers, sharing strategies and offering mutual support. She also helps connect newly diagnosed individuals and families with DPF’s extensive library of free resources, including the Every Victory Counts® manual, a handbook on how care partners and their loved ones with Parkinson’s can live well today.

“The resources I wish I’d had 25 years ago are the ones I now try to get into other people’s hands,” she says.

What’s Available Right Here in the Lowcountry

Since moving to Hilton Head in 2019, Susan has found a growing Parkinson’s community and, over time, has become a key connector within it. She not only helps people find existing support, but also works to strengthen and expand what’s available.

Part of that effort involves education. In addition to supporting individuals and families, Susan often raises awareness within the medical community. “We have a ways to go in educating the community,” she says. “Most people still see Parkinson’s just as a motor disease. There is so much more to it than tremors and stiffness and changes in gait.”

That gap, however, also creates opportunity. After connecting a local physician with Davis Phinney Foundation materials, Susan saw firsthand how impactful that knowledge-sharing could be. The doctor, she says, was eager to learn and began sharing those resources with newly diagnosed patients. “She doesn’t just give them the meds and say, ‘See you in six months,’” Susan explains. “Instead, it’s, ‘Here’s some information, here’s someone to talk to.’ A roadmap.”

At the same time, Susan continues to point people to the support already available locally. Today, that includes monthly Parkinson’s support groups in Bluffton and Beaufort County, an informal “PD Ladies” group in Sea Pines, and a care partner luncheon group through the Women’s Association of Hilton Head Island (WAHHI). In addition, programs like Rock Steady Boxing in Bluffton offer non-contact boxing classes specifically designed for people with Parkinson’s, helping improve strength, balance, and coordination.

During the pandemic, Susan also launched her own virtual care partner support group, which continues to meet online and now includes participants from Maine, North Carolina, and South Carolina.

At the same time, she’s working to rebuild a critical piece of local infrastructure: an exercise class for people with Parkinson’s in Hilton Head. When a previous program lost its lease, the offering disappeared. Susan is now coordinating with trainers to secure certifications and hopes to relaunch the class by Labor Day.

Looking even further ahead, she plans to establish a foundation in Michael’s honor to help fund Parkinson’s fitness programs for those who cannot afford them. “I believe there are some people for whom it’s just not in the budget,” she says. “Exercise is one of the most important tools we have for slowing Parkinson’s progression, and I don’t want cost to be the reason someone misses out.”

Susan Mosher is proof that a care partner’s experience, however hard-won, doesn’t have to end when their loved one is gone. For her, it became a calling. And for anyone newly navigating Parkinson’s, her message is simple: reach out, connect, and don’t do it alone.

Lowcountry locals can connect with Susan Mosher at: https://davisphinneyfoundation.org/ambassador/susan-mosher/.