Saturday, May 18, 2024
54.0°F

Woolnough details life with Parkinson's

by Mary Malone Staff Writer
| April 11, 2019 1:00 AM

SANDPOINT — With a passion for research, education and advocacy of Parkinson’s disease, A.C. Woolnough said he feels an obligation to help in the global effort to learn more about the disease.

Why? Because, despite his own diagnosis of the disease, he can help. He can travel across the country as he did today, for example, to review grants in New York in his role as a research advocate on the People with Parkinson’s Advisory Council for the Parkinson’s Foundation.

“While it’s work in a sense, it’s also fun,” Woolnough said. “And again, I have that obligation to represent the people who can’t do that.”

After 37 years as an educator and self-described “old English teacher,” it only made sense that Woolnough would begin documenting his journey in a number of amusing, yet serious, short stories. These short stories, published as a monthly column in local publications over the past four to five years, have been compiled into Woolnough’s first book — “On Fire: Reflections on a journey through life with Parkinson’s Disease.”

“The people with Parkinson’s, we can do more than we imagined sometimes,” Woolnough said. “So that’s basically what the title references — to be on fire, to be passionate, to be involved, to stand up and be heard, and to correct a lot of misimpressions.”

His wife, Pamela Woolnough, to whom the book is dedicated, said the title of the book is also about her husband’s passion.

“A.C. is inspired by the people in the Parkinson’s community — both the researchers and the Parkinson’s people who are leaders in the community, and then he in turn inspires others,” she said. “We want to bring all of that information to our community, to our Parkinson’s people in our community, and that’s what puts him on fire in my eyes, is his passion.”

While Woolnough was diagnosed with a “tremor-dominant” form of Parkinson’s, which is theoretically the slowest progressing, he said his dad was the “poster child” for the disease. He was stooped over and slow moving, with a soft voice and using a walker, Woolnough said. His mind, however, was still intact.

“He was one of the smartest people I’ve ever known,” Woolnough said.

His dad is the subject of at least one story in the book. Titled, “The Thief vs. the Superhero,” the story is about how the disease is like a thief — insidious, sneaky and destructive. Superheroes do exist, Woolnough wrote, as Parkinson’s warriors fight that thief every day. He wrote about a man named Bob, whose goal each day was to prepare and eat breakfast in under an hour, in an effort to beat the “thief” that was trying to take away his dignity and self-control. That was Bob’s superpower, Woolnough wrote. It wasn’t until the end of the story that Woolnough reveals Bob was his father.

Woolnough said he had always wanted to write a book, and after he was diagnosed with the disease and started meeting all the “movers and shakers” in the Parkinson’s community, he realized a lot of people were writing books. Most of those books, however, are full of self-help information and advice.

“Mine is just telling a story — what it’s like for me and the people I know, and the things I get involved with,” he said.

Among his efforts toward research and awareness of the disease, Woolnough has participated in a number of research studies, and is one of three ambassadors from the United States who participates in the World Parkinson Congress, which occurs every three years in different locations across the globe. The event brings around 5,000 physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson’s disease together, allowing for a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for the disease.

The next conference is in June in Kyotos, Japan, where Woolnough has been invited to host a pre-congress course, and co-host a roundtable discussion about the relationship between researchers and people with Parkinson’s. His pre-congress course is titled, “Tips and Tricks for Living with Parkinson’s that Go Beyond Medication.”

His goal was to finish the book before the conference, because there is a “book nook” at the event, where people can look through and order books.

“So authors don’t have to bring 100 books and return with 80, or bring 20 and wish they had 100,” Woolnough said. “I figure the best way to sell a book about Parkinson’s is to go where the people with Parkinson’s and the community goes.”

With the excitement of a little kid at Christmas, Woolnough received the first shipment of his books, printed by 48HrBooks in Ohio, last Friday.

“On Fire” is now available for purchase at Vanderford’s Books and the Corner Bookstore in Sandpoint, or email Woolnough at acwooly@gmail.com. A copy is available at the East Bonner County Library District as well.

Mary Malone can be reached by email at mmalone@bonnercountydailybee.com and follow her on Twitter @MaryDailyBee.