by Elyse Wild • photography by Two Eagles Marcus
Alison Sheltrown took the stage at the Goei Center in Grand Rapids, draped in an elegant black dress and flashing a contagious smile to the audience who sat before her eagerly waiting to hear her story. The body builder, Krav Maga expert, self-proclaimed promoter of happiness and Grand Rapids resident was speaking at the 12th annual Winterfest Celebration, a fundraiser to support research at the Van Andel Institute. What she said next, no one in the crowd will soon forget:
“My name is Alison Sheltrown. I am 44-years-old, and three years ago I was diagnosed with Parkinson’s.”
Sheltrown belongs to a rare group. According to a report by the National Institute of Health, Parkinson’s disease primarily affects men above women by almost a 2 to 1 margin, and the number of women diagnosed under the age of 50 is even fewer. Men and women experience the disease differently; women with Parkinson’s often report less satisfaction with their life than men with Parkinson’s, even with similar levels of symptoms.
What is Parkinson’s Disease?
Parkinson’s is a neurological disorder that occurs when a person’s brain stops producing dopamine, the neurotransmitter responsible for regulating emotions and motor function. It’s a slow disease, developing gradually with mild to non-existent symptoms that are not prevalent until it has progressed over many years.
“My story starts with pain,” Sheltrown explained. “I had horrible pain shooting down my arm. It got so out of control, I thought, ‘I guess I am going to have pain for the rest of my life.’”
After seeking treatment from a physical therapist, she was directed to an orthopedic surgeon, who performed surgery to remove a herniated disc that was thought to be the cause of her persistent pain, to no avail. Finally, after two years of enduring the excruciating pain, Sheltrown decided to see a neurologist.
“He knew right away what it was,” Sheltrown recalled. “He didn’t tell me. After he did all of these tests, he pulled me in for an appointment and said, ‘You have Parkinson’s. Don’t freak out!’”
Sheltrown describes the utter disbelief that washed over her.
“The only people I knew with Parkinson’s were Michael J. Fox and Muhammad Ali,” she said. “I had only seen very progressed people. I had never seen anyone young or active — or a woman for that matter.”
Parkinson’s patients are required to take a synthetic form of dopamine. Long-term use of the medicine results in dyskinesia (the uncontrollable tremors and involuntary movements most people associate with the disease), or it stops working all together and brain surgery is performed as a last resort. Currently, there is no other treatment for Parkinson’s.
Exercise causes the brain to produce dopamine naturally, and because Sheltrown is dedicated to staying active—weight training three to five days a week, walking her dogs or whaling on a punching bag at the gym—her Parkinson’s has not progressed in three years. Already a fitness trainer and martial arts enthusiast, she started CrossFit training just two weeks after her diagnosis.
“Exercise is just as important as the medication,” Sheltrown professed. “I am so passionate about fitness because it is what keeps me strong.”
Parkinson’s affects people in a variety of ways— inability to control muscle movement, facial masking, severe depression, anxiety, difficulty interpreting other’s emotions, insomnia and loss of verbal fluency are common symptoms.
Sheltrown said the reality of her diagnosis did not set in right away.
“A while later I had a breakdown,” she described. “I was sitting in the car after dinner, crying and thinking, ‘What is going to happen to me?’ Then I took a big breath and I said to myself, ‘You have two options—you can chose to let this disease define you, or you can chose to fight back, and make the best of every day.”
Then and there, Sheltrown committed herself to living the higher purpose of her diagnosis. She began sharing her story on Facebook, inspiring others and connecting with women like her who were living with Parkinson’s.
“I tried to make it my passion to find a way to share,” she expressed.
She also began volunteering at the Van Andel Institute, where groundbreaking discoveries in Parkinson’s research are currently taking place. Sheltrown considers the Institute an ally, as Parkinson’s is largely regarded as an “orphan disease,” or one that has not been afforded enough dedicated researchers to warrant breakthroughs.
“I am so grateful for the Institute,” Shetlrown said. “This is where I want to be— I want to be a part of supporting the people who are doing the hard work to find a cure. I’m so lucky to be living in a city where we are as close to finding a cure as we ever have been.”
Sheltrown continues to lend her time and her story to helping the Institute raise money for research, and is becoming the face of a community that is shattering the widely held notion that Parkinson’s is an inevitable result of aging.
“People dismiss it as part of old age,” Sheltrown explained. “I feel very passionate about being a voice for people who are left behind by this. There are millions of us—we have families, children and lives that are destroyed by this. I want to represent this community of people.”
In spite of the challenges she faces, Shetlrown considers her diagnosis a gift that has encouraged her to live her life with more compassion and empathy.
“I am a better person now than I was before,” Sheltrown smiled. “I try not to focus on what Parkinson’s took away, because it has given me so much more.”
April is Parkinson’s Awareness Month. For more information on Parkinson’s and events taking place this month, please visit Purplecommunity.vai.org.