“Take Control” Connects Community with Medical Researchers

Chuck Hall opens a faded, pocket-sized ledger to show you all the names and dates, painstakingly transcribed by hand. All the pesticides, all the herbicides that Hall, now 70, sprayed long ago at his family’s 30-acre apple orchard in Missouri are listed there. Hall, diagnosed with Parkinson’s Disease several years ago, wonders if his tidy record holds any clues to a key question at “Take Control! A Symposium to Advance Research on Parkinson’s Disease” held on May 4 at Northeast Ohio Medical University: How much depends on your genes, and how much does your environment determine your chances of developing the disease?

Hall, who now lives in Wooster, was one of about 200 community members and scientists who convened at the NEOMED Education and Wellness Center on Wednesday for the event, which was free and open to the public. It was not the usual scientific conference or community meeting but a stimulating mashup of both. The tunes were pumping for Rock Steady Boxing and the crowd stretched to yoga moves. Then everyone progressed to scientific presentations and the chance to ask physicians and researchers questions. Access to experts was something clearly prized by the attendees, especially at an “Ask the Doctor” Q&A event where the questions flew: Should I avoid protein? Is it ok to drink any alcohol? Are there specialists who can answer the vision problems of Parkinson’s patients? What do you think of the new medication that has been approved for psychosis in Parkinson’s?

Or the heartfelt question, What can I do for someone with apathy?

Answers are hard to come by for this puzzling neurodegenerative disease.  It has been nearly 200 years since Parkinson’s was named for James Parkinson (the author of “An Essay on the Shaking Palsy”).  Yet it still has no disease-modifying therapy, noted guest speaker Amber Van Laar, M.D., Ph.D., of the University of Pittsburgh Medical Center. In other words, all that can be done is to treat the symptoms, though the researchers speaking and presenting their work on posters displayed in the NEW Center are working to find therapies.

On Wednesday, NEOMED announced that it is focusing research efforts in an area called Neurodegenerative Diseases and Aging, led by director Jason Richardson, Ph.D., a professor of pharmaceutical sciences at NEOMED.  Two of NEOMED’s staunchest supporters, Dick Nicely and Glenn Leppo, both of whom have Parkinson’s, participated in Wednesday’s event.  Leppo led attendees in yoga stretches, while Nicely was on hand representing Rock Steady Boxing.

Looking for Answers

“My interest in being here is in new medications and new delivery systems to maximize the amount of medicine that cross the BBB—the blood-brain barrier,’’ Chuck Hall said. For those with Parkinson’s, the language of medicine and abbreviations becomes second nature. Maybe that’s why participants who weren’t scientists attended scientific presentations on Wednesday, right along with a pharmacist-led presentation on medication management and a session on how to participate in research.

That last topic is close to Glenn Leppo, who participates in clinical trials himself— and as an Ambassador for the Fox Trial Finder, also recruits clinical trials participants for the Michael J. Fox Foundation.

In a scientific presentation, Dr. Van Laar talked about her research in procedures to modify or replace defective genes. Afterward, a woman sitting with an older couple raised her hand to ask a question, prefacing it with ‘’I’m a lay person…’’ It’s not easy to bring together the technical language of research with the pressing needs and questions of patients or their family members. Dr. Van Laar, a neurologist who also holds a Ph.D., was especially well-suited to Wednesday’s event. She divides her time between treating patients and pursuing research, so the concerns of patients are front and center for her.

There’s no cure for Parkinson’s…yet. Still, Wednesday’s event offered hope.