Sussex Woman Manages Parkinson's Disease with Movement and Humor

Hindsight is 20/20 for Samantha Felder who can recall experiencing a very slight shaking in her hand as a teenager at Hamilton High School. Now 30-years-old, Samantha recognizes this was an early sign of Young Onset Parkinson’s disease (YOPD). In 2011, while a senior in college, Samantha was diagnosed with this neurodegenerative disorder, which occurs in people younger than 50 years of age.

To support Samantha and the local Parkinson’s disease (PD) community, friends and family are joining as Team Young’ns Hero’s for Moving Day Milwaukee. Hosted by the Parkinson’s Foundation, Moving Day Milwaukee will be held on May 22, 2021, and participants may attend the drive-through contactless celebration of movement at Hart Park in Wauwatosa or join virtually from home at 10 a.m.

Those attending remotely can participate in various instructor-led exercises, learn about resources for people with PD and their loved ones, visit with sponsors and hear inspiring stories of individuals who face the disease with courage and strength each day.

So far, Team Young’ns Hero’s has raised $785. Keeping her sense of humor, Samantha is incentivizing people to donate and has said if she reaches her fundraising goal of $1,500, then 15 donors can throw a pie in her face. She offered a similar perk last year and posted the experience on Facebook Live.

Samantha has always enjoyed a good joke and had an expressive, energetic personality; so, years ago when her parents noticed she appeared stoic and physically rigid, they were concerned. Samantha was unaware of these changes in herself and brushed them off as signs of fatigue. When she began enduring intense, persistent headaches, Samantha saw a neurologist and ultimately additional specialists who diagnosed her with YOPD.

People diagnosed with YOPD have a more frequent family history of Parkinson’s disease and a longer survival; however, until recently, Samantha was not aware of a genetic link to the disease. Through the Parkinson Foundation’s PD GENEration: Mapping the Future of Parkinson’s Disease study, she learned she has two mutations on a Parkinson’s-related gene.

“I was hesitant to get tested because if the results were negative I was concerned I’d be left without any answers as to why I’m living with this challenging disease,” said Samantha. “After being told I do have a genetic link to PD, I actually felt somewhat relieved. I’m now in a position to better manage my disease in the future and explore clinical trial options. Also, my family plans to pursue genetic testing to gain a better understanding about their own risk.”

The Parkinson’s Foundation will offer genetic testing as part of its PD GENEration initiative on-site at Moving Day Milwaukee. Genetic testing can be a powerful tool to uncover biological pathways that cause PD, and this understanding can lead researchers to improved treatments and care for people with Parkinson’s.

Already researchers know about the benefits of progressive, intensive exercise for people with PD. Studies have shown exercise can improve gait, balance, tremor, flexibility, grip strength and motor coordination, plus it may possibly slow disease progression.

Samantha walks, cycles and dances regularly. Each week, she attends ballet, jazz and tap classes, and she has started training to coach Rock Steady Boxing classes, a PD-specific fitness program. Samantha’s treatment plan also includes medication, proper nutrition and stress management.

“The symptoms come in waves and I have good and bad weeks, but when I exercise, whether that’s throwing jabs at a punching bag or doing a Zumba routine, I feel my best both physically and mentally,” said Samantha.

Parkinson's disease is a neurodegenerative, progressive disorder that affects dopamine-producing neurons in a specific area of the brain called substantia nigra. People with PD may experience tremors, slowness of movements, gait and balance problems, and non-motor symptoms including depression, anxiety, constipation and cognitive impairment. Approximately 60,000 Americans are diagnosed with PD each year, and in Wisconsin, there are an estimated 15,000 people living with Parkinson’s disease.

Moving Day Milwaukee is a movement for change—towards more awareness, more funding, and more understanding of Parkinson’s disease. In its five-year history, Moving Day Milwaukee has raised nearly $264,000 for local research and programs that help improve the lives of patients and families affected by Parkinson’s disease.

Moving Day is made possible, in part, through the generous support of national partners Abbott, Amneal, Lundbeck, Right at Home and Sunovion. Locally, the event is sponsored by Froedtert & Medical College of Wisconsin, GE Healthcare, Kyowa Kirin, Medtronic, My Choice Wisconsin, Neuraly, Supernus, UCB and 95.7 BIG FM.

To learn more and register for Moving Day Milwaukee, visit MovingDayMilwaukee.org. Registration is free and participants are encouraged to fundraise.

About the Parkinson’s Foundation

The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. For more information, visit www.parkinson.org.