Mother-daughter team goes for knockout in fight with Parkinson’s disease
Mother-daughter team goes for knockout in fight with Parkinson's
A heavy bag hangs from the ceiling of the brightly lit rehab center as twenty-four boxers snake between exercise machines rotating between stations in the makeshift boxing gym. Karen Cretaro, a 64-year-old grandmother with muscles rippling under a black tank top, circles the heavy bag and throws a series of crosses and jabs. Her short, dirty-blonde hair clings to the sweat on her forehead, and her bright, salmon-colored shoes shuffle in purposeful movements. With each punch, she hits words scribbled onto the bag’s white canvas: muscle pain, no smile, slower than slow.
“I look at the words and I think, ‘Who wrote that down?’” Cretaro said. “It’s all the same things that we all hate about living with Parkinson’s.”
The heavy bag invites boxers to vent their frustrations and literally pummel the symptoms that make living with the neurodegenerative disorder difficult. Parkinson’s disease has no cure, but medications, exercise, and sometimes surgery help manage symptoms. Patients lose motor functions as the disease slowly maroons the body, isolating it from the functions of the mind. The neurological disorder affects one in 100 people over age 60, and there are nearly 1 million people living with Parkinson’s disease in the United States, according to The Michael J. Fox Foundation.
“Parkinson’s is the fastest growing neurological disorder in older adults,” said Dr. Jeff Bauer, a researcher currently studying Parkinson’s and a professor at SUNY-Cortland. “We are passing Alzheimer’s, and several others because of its increased awareness.”
But four days a week, this soon-to-be-closing outpatient clinic treats no patients — only trains boxers. It houses Syracuse’s affiliate of Rock Steady Boxing. There are more than 500 Rock Steady Boxing affiliates around the world. The program began in 2006 in Indiana with only a few boxers and experienced exponential growth after it was featured on 60 Minutes in 2015. The non-contact boxing therapy targets the loss of motor skill functions associated with the disease.
The local chapter celebrated its one year anniversary in February, and boasts 25 boxers who attend classes. But its current location at the Centers at St. Camillus outpatient clinic is closing as the facility downsizes. Coaches Patrick VanBeveren, Julie Lombardi and Karen Cretaro are working to make sure the program can continue in a new space. They are in current talks with potential host sites, but haven’t secured a new location.
“We don’t want to lose this family that we have put together,” said Lombardi, a physical therapist who has worked extensively with Parkinson’s patients the last 20 years.
For Lombardi, those relationships represent more than the close-knit atmosphere of the clinic.Her mother, Cretaro, the boxer in salmon-colored kicks, is both coach and Parkinson’s patient. On this day, Cretaro finishes her station by walloping the punching bag on a single phrase, a single symptom that started her battle: Can’t Write.
In the family
In September 2015, after hanging up a phone call at her family-owned auto body shop in North Syracuse, Cretaro checked the notes she just scribbled. The handwriting was cramped, all the letters bent into one another — illegible. Over the course of that year before her diagnosis, more symptoms began to appear. Physical challenges that were familiar from conversations with both her physical therapist daughter and from her husband, whose father suffered from Parkinson’s. She began to try to hide these symptoms from her family, friends and customers for almost a year.
“I was always looking for signs in my husband, cramped handwriting being one of them,” Cretaro said. “I remember thinking, ‘Am I so worried about my husband getting Parkinson’s, that I’m talking myself into it?”
She went to specialists for her hoarse throat, made appointments to talk about her gait imbalance. Sitting in bed, she would convince herself that today would be the day that everything would be normal. She would will her arms to swing freely when she walked, she wouldn’t feel like she was staggering drunk when walking in a straight line, and her body wouldn’t feel so tired.
But Parkinson’s can be difficult to diagnose. “Parkinson’s is diagnosed by ruling out everything else: brain tumors, cancer, ” said Bauer. “It’s unique to each patient. It’s nice to have a recipe, and Parkinson’s doesn’t let you do that.”