Wayne County Wanderings: Susie Atcavage and the battle against Parkinson's Disease

My Uncle Wayne was one of the funniest people I've ever met in my life.

No matter what the context or situation, Uncle Wayne somehow always had the perfect joke to tell … a joke that broke the tension and made everyone within earshot relax.

On this particular day, though, he didn't seem to be feeling very funny. It was a late summer afternoon and we were sitting side-by-side outside his rustic house at the base of Morgan Hill.

Uncle Wayne was a man's man. He was a World War II veteran, truck driver and woodworker. His calloused hands had built the home he shared with his wife of 60 years, the home in which they'd raised a family and chased the American Dream.

Now, however, I couldn't help but notice that those strong hands were trembling … shaking to the point that he nearly dropped the glass of iced tea Aunt Marion had poured him.

“Damn Parkinson's,” he said softly through clenched teeth. “Damn Parkinson's.”

While I'd known for some time that Uncle Wayne was sick, I didn't have the guts to ask anyone what exactly was going on.

The revelation that it was Parkinson's hit me hard.

I remember racking my brain during the drive home, trying like crazy to think of some way that I could help … but, all the while feeling so sad and helpless.

The Clock is Ticking

Susie Atcavage knows that feeling all too well.

She's a Physical Therapist who has always been passionate about helping those dealing with neurological disorders. To be honest, it's been her life's work, more of a calling than a career.

Despite her years of training and clinical practice, though, Susie wasn't in the least bit prepared for the phone call she received from her Dad almost a decade ago.

Eric Linde is a self-made man, just like Uncle Wayne. He dropped out of Penn State back in the '60s and went to work for the family business.

Over the course of the next five decades, Leeward became one of the biggest and most successful construction companies in all of the northeast.

Not surprisingly, finding out that he had Parkinson's was a crushing blow … one that Eric thought could well signal the end of life as he'd always known it.

“I remember the day Dad got the diagnosis and called me,” Susie recalls. “He was devastated. He was crying. The doctors told him he had maybe five good years left.”

By the Numbers

According to the National Institute of Health, Parkinson's Disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, difficulty with balance and coordination.

Symptoms usually begin gradually and worsen over time. As the disease progresses, people may have difficulty walking and talking. They may also have mental and behavioral changes, sleep problems, depression, memory difficulties, and fatigue.

While the total number of people worldwide currently suffering from Parkinson's is comparatively small, new diagnoses are rising with each passing year.

According to the Mayo Clinic, between seven and 10 million folks were battling the disease as of 2021. And, while more than half of those cases are in China, the United States now has more than a million patients with an estimated 60,000 joining their ranks every year.

Parkinson's ranks second behind Alzheimer's as the most common age-related neuro-degenerative disorder in the world today. In fact, there are more people battling Parkinson's right now than MS, MD and ALS combined.

Men are 1.5 times more likely to receive a diagnosis of Parkinson's than women. The disease usually strikes later in life with the vast majority of cases being detected after age 80. Only about four percent of cases appears before a patient's 50^th birthday.

Contrary to popular belief, Parkinson's alone is not fatal. Many diagnosed with the disease go on to enjoy long and productive lives thanks to ever-improving forms of treatment and medication.

Sadly, there is no cure for Parkinson's and symptoms do become increasingly severe as the patient ages.

However, thanks to dedicated “warriors” from Honesdale to Hollywood, there is a genuine sense of hope on the horizon.

Michael J. Fox

The 7^th Annual Fox Trot 5K for Parkinson's Research took place last Saturday morning in Milford.

Susie Atcavage served as Race Director for the second time, overseeing this year's event which attracted 425 participants.

Incredibly, the 2022 race generated nearly $50,000 in donations … which brings the grand total thus far to almost $290,000.

The increasingly popular 5K is held every June in conjunction with the Michael J. Fox Foundation, an organization created by the beloved movie and television actor.

Fox discovered that he had Parkinson's at the age of just 29. He kept that diagnosis private for nearly a decade before going public and beginning his crusade to find a cure.

Now, the “Back to the Future” star is the face of Parkinson's awareness and research worldwide. He's also an inspiration for the Fox Trot 5K organizers, who donate a large chunk of race proceeds to his Foundation.

“They are doing incredible things!” Susie exclaimed. “They handle Phase I and Phase II research, which allows the larger companies not to have to focus on the initial stages. They help keep the research moving through the pipeline.”

The Michael J. Fox Foundation is responsible for supporting about 3,000 research projects with more than $1 billion invested.

At the moment, a large segment of that research is directed at disease modifying interventions. These are approaches aimed at slowing the progress of Parkinson's and giving patients a better quality of life.

These positive strides are among the many reasons that Atcavage is hopeful for the future. She's intensified her professional Physical Therapy studies, even earning Board Certification as a Neurological Clinical Specialist in 2021.

More than anything else, though, her battle against Parkinson's is personal … which brings us back to Eric Linde.

Never Surrender!

Do you remember back at the beginning of the column when Eric's doctors told him he had just five good years left? Well, that was eight years ago and he is still going strong.

“Dad's doing well,” Susie said. “There are definitely changes and progression, but he's doing very well.”

Atcavage's involvement in the Fox Trot 5K is just one of many ways she's since discovered to take a proactive approach to the situation.

Wayne Memorial Hospital has a well-regarded Parkinson's support group that's been a Godsend.

In addition, the family became heavily involved in the Tri-State Parkinson's Project, a non-profit organization based in NEPA and founded by two couples: Rolland & Jan Grote, Erwin & Marcia Guberman. It was Rolland who came up with the 5K slogan: Back to the Future — Where Parkinson's No Longer Exists!

“The Project is committed to promoting a local grassroots effort to make sure that no one with Parkinson's feels alone or can't find resources,” Susie said.

Eric currently serves as Tri-State's President. He's also gone back to college to earn his business degree.

While Uncle Wayne passed away back in 2017, his battle with Parkinson's and my conversations with Susie leave me with a genuine sense of hope for the future.

“Our local communities have really stepped up,” she said. “I know that we aren't going to find a cure for Parkinson's tomorrow, but I do believe that it will happen. There's no reason for anyone to live alone with this diagnosis. We're here to help!”

If you'd like to learn more or perhaps even contribute to the fight against this insidious disease, please visit the Tri-State Parkinson's Project website, or PoconoFoxTrot5K.org.

Donations can also be mailed directly to 239 Golf Hill Road, Honesdale, PA, 18431.

This article originally appeared on Tri-County Independent: Wayne County Wanderings: Parkinson's 5K held in Milford