By STACIE FANELLI
Sixteen years ago, Carol Schulte, an aerobic-dancing instructor and all-around fitness nut, walked into a doctor’s office to get an explanation for her stiff arm and inability to hold a cup of coffee to her lips. She walked out with an incurable, lifelong illness.
Afterward, she took a final run down the ski slopes of Vermont.
“That was a pity party,” she said.
But since then, she’s has had little time to feel sorry for herself.
Instead, she educates others about her ailment, Parkinson’s disease, and participates in research studies that usually involve MRIs or challenging treadmill tests.
Parkinson’s is a brain disorder that leads to difficulty with movement, walking and coordination. Schulte is lucky not to have the tremors sometimes associated with it, but she suffers from occasional “foot freeze,” which stops her in her tracks.
Late in her tennis-playing days, for example, Schulte found she could throw her arm back and let a tennis ball fly high in the air, but her feet would remain stubbornly in place when she tried to sidestep during a serve.
“When you get in crowds, when you get in tight spaces, your feet just don’t move. They just sort of stick to the floor,” she said.
Still, she finds it difficult to complain about much in the way of daily struggles. Though swallowing, digesting, remembering to breathe and eating in public for fear of sporadic choking are all concerns for Schulte, she shrugs them off as things she’s gotten used to over the years. For the most part, it’s the general population’s lack of knowledge about the disease that gets to her.
“When you fall and people don’t know you’ve got Parkinson’s disease, they think you’re drunk, I’m sure,” she said.
Falling is inevitable for those living with Parkinson’s, and Schulte said the knees are probably most vulnerable to the disease. Even though she exercises every day to keep her muscles agile and enjoys a daily crossword and Sudoku puzzle to keep her brain sharp, the effects of the disease will one day overcome her.
“For the first three to five years, I was really just scared to death that I would become this dependent, older wheelchaired type of person,” she said.
At 64, Schulte is instead a self-sufficient real estate agent who works on the side as an advocate for the Parkinson’s Disease Foundation. She talks to anyone who will listen about the importance of participating in studies.
“I’m an avid believer in lending my body, my genes, my brain if they need it, to science, because if we don’t do it, how are they going to do a study?” she said. “How are they going to come up with any answers to Parkinson’s disease?”
Schulte offers advice to others with the disease in the form of a creed she lives by, which inspires her to stay positive and proactive: “God only gives problems to people who can handle them.”
Though she has lived in Red Bank since 1969, she doesn’t know her neighbors as well as she’d like because she spends so much time in New York City, the hub of advancements in Parkinson’s research, getting treatment and participating in research.
But this past January, Schulte was having a particularly dynamic session at Live Well Physical Therapy in Fair Haven when she said to her physical therapist, “More people ought to know about this exercise stuff. It’s important to get the word out.”
On Tuesday, June 5, the product of that eureka moment will come to fruition as she hosts Monmouth County’s first ever Parkinson’s awareness seminar in Red Bank.
Nearly 70 people have already signed up to attend the event. Schulte is thrilled with the interest so far, especially because she had no idea how many fellow locals were affected by Parkinson’s when she began to plan. She only knew that Riverview Medical Center’s support group was very small. Meridian Health is standing behind her by sponsoring the seminar.
Schulte has the support of many other local organizations, including the Community YMCA in Red Bank, which has been advertising the seminar to participants in its exercise classes.
While the seminar will feature medical speakers and will emphasize getting to know the nearby Parkinson’s community, interactivity is also planned in the form of chair yoga and a new dance therapy aimed specifically at Parkinson’s patients. Schulte is interested in working with the instructor to bring that type of dance to the area in the future.
“I am getting more and more local,” she said. “It’s not been a well-known disease that gets attention, and if it doesn’t get attention, it doesn’t get government dollars.”
Exercise therapy is the form of treatment Schulte throws most of her support behind, not just because she’s so fond of keeping fit, but also because it encourages people of all physical abilities to fight.
“Don’t just sit back and say, ‘Oh, poor me. I have Parkinson’s.’ Because you know what? It’ll get worse,” she said. “Even if you’re in a wheelchair, you get those weights out, you get those arms up.
“You just have to keep gritting your teeth,” she said.
While Schulte’s long-term ambitions involve prompting Congress to act and making her right leg as strong as its counterpart, her immediate goal is simple: to beat her grandchildren in Wii tennis.