Navigating Parkinson's together

At some point, everyone’s life veers off the path they expected. When it does, the difference between coping and unraveling often comes down to whether someone is walking that path alone—or with others. Ken Posey, Sarah Stegall, and Barbara Williams found their fellow travelers when, at a time when they were planning to enjoy their retirement years, they instead learned they would be battling the symptoms of Parkinson’s disease.

PD is most commonly diagnosed in people in their 60s and beyond, though the disease often begins its insidious course decades earlier and can be recognized in younger adults. At any age, it reshapes lives and identities at many stages.

We don’t know the exact cause, but neuroscientists have discovered that clumps of misfolded proteins accumulate in cells of the brain, piling up like cellular trash and interfering with how those cells function. Early on, PD affects the gut and digestive system, sleep centers in the brain, and the sense of smell. Over time, the disease reaches the brain’s movement centers, where damaged cells can no longer produce enough dopamine, a vital chemical involved in smooth, automatic motion.

Movement symptoms may vary. Some people might notice a tremor. Barbara, who had a career as the public health educator, and Ken, an SP railroad engineer for 46 years, both first noticed changes in their handwriting. Others experience stiff muscles. As dopamine loss increases, dressing requires more concentration, balance and walking become difficult, faces lose their expressions, voices may soften, and for some words may be hard to find.

Ken, Sarah, and Barbara are among the one million Americans currently living with PD. According to the Parkinson’s Disease Foundation there are about 90,000 new diagnoses in the U.S. each year—that’s one in every 300 people.

But even more individuals are impacted when we consider the unseen weight on the families who become drivers, schedulers, and caregivers as their loved ones’ disease progresses. Their lives, too, are reshaped in ways that are rarely visible. Fortunately, those with soft voices are given strong voices through advocates and scientists as research shines light on the neurodegenerative disease.

In the meantime, on the third Tuesday of each month from 9-11 a.m., a group of 50 or so gather at the Holiday Inn Express on Telshor in Las Cruces. Among them are founding member Sarah Stegall, current group leader Ken Posey, and recently diagnosed, Barbara Williams.

Some arrive slowly. Some come arm-in-arm. Some speak easily; others listen. What they share is not just a diagnosis, but a space where they learn how to contend with PD from guest speakers—experts who are devoted to helping others fight the fight while recognizing that everyone’s challenges are different.  

Meetings often focus on educational talks, which have included drug and non-drug therapies, strategies for financial well-being, coping strategies, speech-language training, and resources for wellness, advocacy, and connection opportunities. A “Newly Diagnosed Support Group” meeting with a focus on answering questions about meds, doctors, symptoms etc, is held at 10 a.m. on the fourth Tuesday of each month at Solstice Senior Living.  

Group members also meet outside of their monthly meeting time for activities like pickleball, stretching, boxing, and dancing—activities that help maintain brain health and quality of life.

Importantly, as Barbara points out, “We are not alone. We have a new family and new relationships.” With each other, they don’t have to pretend that they are fine. They can be honest, understood and met with empathy. They are reminded that they are not navigating this disease in isolation.

Community members—clinicians, therapists, caregivers, and individuals with PD—are invited to join. More information about the local PD support group can be found at PDSGSNM.org, on Facebook (Parkinson’s Disease Support Group of Southern New Mexico), or by contacting the support group leader, Ken Posey, at 575-997-8828 or weimy65@icloud.com.

Paula Johnson, Ph.D. is an assistant professor of neuroscience in the Department of Medical Education at Texas Tech Health’s El Paso campus.