A Sussex native was diagnosed with Parkinsons disease at 21 years old. Ten years later, she’s using a platform to educate others. – Milwaukee Journal…

Sussex Hamilton High School graduate Samantha Felder is a certified Rock Steady Boxing coach, a Parkinson's disease-specific fitness program. Felder was diagnosed with Parkinson's disease when she was 21.(Photo: Submitted)

When Samantha Felder was diagnosed with Parkinson's disease at age 21, she had a choice: "I can laugh, or I can cry," she said.

When she thought of it like that, said Felder, now 30, her decision was easy.

"I always had a sense of humor," said Felder, nee Barbian, a 2008 graduate of Sussex Hamilton High School.

She was diagnosed with Young Onset Parkinson's disease in November 2011, duringher senior year at the University of Wisconsin-Stevens Point. Now, she educates others, communicates withhumor and fundraises to finda cure.

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Felder isan ambassador for this year'sParkinson's FoundationMoving Dayevent, at 10 a.m. May 22 at Wauwatosa's Hart Park,7300 Chestnut St.Theevent is scheduled to be a drive-thru, noncontact event where people can hear speakers, visit resource tents and learn more about Parkinson's disease.

People can also attend virtually byparticipating in various instructor-led exercises, learning about resources and hearing inspiring stories.

Felder has already raised $960 for event, with a goal of $1,500, she said.

In its five-year history, Moving Day inMilwaukee has raised nearly $264,000 for local research and programs.

When Felder was a high school senior, she experienceda slight shaking in her hand.

Her parents, Darlene and Craig, noticed that her usually expressive personality became more stoic and rigid. When she started havingintense, persistent headaches, shebegan seeingspecialists.Feldersaid it tookfour years to officiallyget the diagnosis.

On bad days,she is stiff and has trouble getting up. Sometimes she gets two Charley horses at once. Shestruggleswithbalance.

"You just have to run with it and figure out your next step," said Felder.

According to the Parkinson'sFoundation website,about 60,000 Americans are diagnosed with Parkinson's diseaseeach year.In Wisconsin, an estimated 15,000 people livewith Parkinsons. Young Onset Parkinson's affects about 4% of the estimated 1 million people nationwidewith Parkinson's.

Felder said she wants to educatethat Parkinson's does not justhit"old men"and that she can still live an active life for 20, 30 or 40 years.

"It is not a death sentence," she said.

Hertreatment plan includes medication, proper nutrition and stress management.

When Felder saw one of her doctors after she was diagnosed, the doctorsaid, "You need to change majors."

But I graduate in a week, she thought. And instead of switching majors, she switched doctors and moved on with her goal of working in education.

Every since Felder was a child, she wanted to be a teacher. Her basement wasset up as a school where she taught friends.

When she was diagnosed, her goal was to graduate with her classmates, on time, with majors inspecial and elementary education. Parkinson's presented some challenges: She had missed a lot of classes due to being nauseous, one of the side effects of her medication. And taking notes was a struggle because of issues with motor skills; she had to record her classes.

But she had already done education practicums in the community. And her teachers, university officials, roommates and students were "amazing" in helping her, she said.

She taughtfirst grade for a year and thenworked with kids with autism, worked in an after-school program and accepted a new position as a reading and math tutor for kids.

She said she educates others whomshe meets, and she educates othersthrough Facebook.

"I am educating people all the time," she said.

When she got a trike,an adult bicycle with a comfortable seat, for her 30th birthday, she said it became a great conversationstarter.

When people ask her about the trike, she said she uses this as anopportunity to educate others on Parkinson's.

She said she is upfront in talking about her experiences.When she shared her story throughthe Parkinson's Foundationwebsite, she said her motto is to "embrace the shake."

She said when she sees people, such as when she gets her nails done, she willtell people she has Parkinson's disease.

Samantha Felder and her husband, Derek, went on a cruise and visited Haiti in 2019. Samantha was diagnosed with Parkinson's disease when she was 21.(Photo: submitted)

"They can deal with it or take a hike," she said.

She attended the World Parkinson Congressin Portland, Oregon, in 2016 with4,000 people from 42 countries ofdoctors scientists, patients and caregivers. She also attended three Parkinson's policy forums where she shared her storywith elected officials.

She got married 2 years ago. And her Parkinson's is justa normal part of the marriage. "He only knew me with it," she said.

"Everyone has obstacles," she said. "Mine is tremors."

She also set up an audition forherself,her husband, Derrek, her father and herin-laws, Kathy and Mike, to be contestants onFamily Feud.Her family made it through the first round and advanced in January for another audition ofthe show.

While there is no cure for Parkinson's, Felder said that regular exercisecan slowitsprogression.

She is a certified coach through Rock SteadyBoxing, a program in which participants use noncontact boxing to exercise.According to the program's website, the boxers "condition for optimal agility, speed, muscular endurance, accuracy,hand-eye coordination, footwork and overall strength."

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She also does Zumba, ballet, tap and jazz dancing. And she has ziplined over the ocean in Haiti, because her husband "thought it would be fun."

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

Felder said it is important to continue to fundraise so support efforts seeking a cure for Parkinson's. She also created an event with her father, Punt Parkinson with a Pack,a golf outing fundraiser with a Packers game and auction.She has raised more than $50,000 with the event, and plans to hold another inmid-September.

Through the Parkinson Foundations PD GENEration: Mapping the Future of Parkinsons Disease study, she recently learned she has two mutations on a Parkinsons-related gene.

I was hesitant to get tested because if the results were negative, I was concerned Id be left without any answers as to why Im living with this challenging disease, said Felder.

After being told I do have a genetic link to PD, I actually felt somewhat relieved. Im 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," said Felder.

"I would not wish this on anyone," she said.

"But I also would not take this (Parkinson's) away from me," she added, saying she realizes that all the connections she has made and activities she hasbeen a part of are due to Parkinson's.

For more information about Moving Day, to participate or to make a donation to Felder or towardher team YOUNG'NS HERO'S, visit http://www.movingdaymilwaukee.org.

To participate virtually, people need to register and the participants will get a link.

The event is free, but participants are encouraged to fundraise and to make a donation.

Cathy Kozlowicz can be reached at 262-361-9132 or cathy.kozlowicz@jrn.com. Follow her on Twitter at @kozlowicz_cathy.

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A Sussex native was diagnosed with Parkinsons disease at 21 years old. Ten years later, she's using a platform to educate others. - Milwaukee Journal...