Jean Wegner needed a way to share her Parkinson’s experience with others. "It's something I feel people need to know, and people don't talk about it," Jean said. "I hope it will be a learning situation." Jean, now 85 years old, has lived with Parkinson's disease for the past 15 years and says each day is difficult. "I'm finding it's such a part of my life. Now I'm different. I'm an outsider now. It's very sad,” Jean said.
As a way to deal with her struggles, Jean wrote a series of 16 poems documenting her experience with the disease. With the help of her daughter, Martha Wegner, she compiled her poems into a book titled “Poetry in Slow Motion: Navigating Parkinson’s disease.”
When Jean was first diagnosed she had difficulty standing up, but as the disease has progressed, she's now lost her ability to walk and even write. Martha says that Parkinson’s hasn't stopped her mom from creating. "Even though she can’t hand-write she can still dictate, which is how the last few poems were written,” Martha said.
The poems include a range of Parkinson’s themes, such as the seemingly simple task of zipping a coat. Jean writes, "Zippers are a challenge, to start them is a pain. So, in despair, my coat stays open, even in the rain."
Her poems also cover the more life-changing effects of the disease. In "What is Seen," Jean writes, "What she longs for in her silent way, is a special friend to come her way, someone who can look beyond her plaintive stare to see there is a worthwhile person there, someone who can give back to her on this special day, all that Parkinson's has stolen away."
When living in Naples, FL, Jean was part of the Parkinson Association of Southwest Florida, which hosted a support group for those with the disease. During the group's meetings Jean was inspired to write. She began to share her pieces with the group. "They liked it because some of it is light. It was partly therapeutic for them to hear,” Jean said.
Today, Jean hopes sharing her work will help others deal with the grief they experience because of the disease. She also hopes that by reading the book, others who do not have Parkinson’s will begin to understand what it is like. "When people get together and talk, it isn't easy," she said, "As the disease progresses, you realize it's more than you thought. You have to let it be said."
Jean Wegner’s book, “Poetry in Slow Motion: Navigating Parkinson’s disease” is available at www.marthawegner.com.