Excerpts from a June 2025 EASE PD interview with Barry Marks, a regular at NextStage sponsored Taiko Drumming for people living with Parkinson's and married to NextStage member Julie Lorraine.
When did you find out about your Parkinson’s? Julie first noticed a slight tremor in my left hand. My personal physician whose known me for over 30 years just said, “keep track.” A year later he said, “See a neurologist.” The next year he asked, “What was the diagnosis?” I said “essential tremor.” He replied, “Who was the doctor?” “Me!” I said. He advised me to get a “second opinion”. I met my first neurologist in April, 2013. Diagnosis: Parkinson’s. I was 68 and I’m nearly 81 now.
Ease PD—our Santa Cruz Parkinson’s group—how did that come about? Well, after my diagnosis, Julie and I started searching for local activities for people with Parkinson’s. Julie and I heard about a Parkinson’s group that had been organizing informal PD info meetings in the Santa Cruz area for nearly 20 years and started attending their meetings.
In addition, we joined a separate activity (the Tremolos choir) being offered at St. John’s Episcopal Church (still there!). Tremolos was started by Mary Haynes, along with several other parishioners with PD. Mary also had visualized a bigger dream—the informal Parkinson’s group might offer an array of activities and formally apply for non-profit status. Many of the local Parkinson’s people were not ready to make this leap, but Mary along with several others persisted and in July 2014, we received approval from the IRS as a 501(c)(3) named Ease PD! I was one of the four original Ease PD Board members as well as the first treasurer of the group.
What’s the hardest part of PD for you? The fact that dopamine affects so many different areas of the body—brain function, nervous system, swallowing, walking. It’s very challenging because you’re dealing with the stage you’re in and then something new crops up in an area you hadn’t previously been aware of.
What’s been a lesson you’ve learned from our Ease PD people? Parkinson’s is a complicated and perplexing disease that affects individuals in many different ways. I’ve learned that what works for me (medications, activities, new medical treatments, etc.) may not work for others with PD. I also have come to realize that sometimes I need to take a day or two break—before it becomes a job—I have to realize that this IS my JOB, but I have to have a balance. My whole life can’t be just about PD.
What keeps you going? I think it’s the significant things being researched now—almost breakthroughs—to help slow down or reverse the disease. There’s a lot more hope than there was 10 years ago.
Barry Marks
Taiko Drumming participants