Jill Schramm/MDN Steve Hammel, left, Patron Services director at the North Dakota State Library in Bismarck, visits with Julie and Larry Korner of Williston, who collected a variety of informational materials in checking out the booths at the Parkinson’s Symposium in Minot Wednesday, Sept. 17.

An opportunity to learn drew attendees to the annual Parkinson’s Symposium in Minot on Wednesday, Sept. 17. Just as important, though, was the chance to form and renew connections with others living with a Parkinson’s diagnosis.

Larry and Julie Korner of Williston have regularly attended the symposium.

“There’s so much information,” said Julie Korner, who carried a stack of brochures, giveaways and other materials as she and her husband visited the many resource booths. Korner said her father, now deceased, had Parkinson’s, and her parents were among those who helped start the symposium. Joining her at this year’s symposium was her mother, Eilene Emly, 92, of Minot, who retired two years ago as coordinator of a local Parkinson’s support group, which she had started.

Emly said she continues to attend the symposiums because “I love the people.” Korner agreed the community of people with Parkinson’s becomes like family as they work through the disease together.

North Dakota has one of the highest rates of Parkinson’s in the United States, said Dr. Megan Dooley, an occupational therapist from Bismarck who was one of the speakers at the symposium. Because North Dakota is a small state, pharmaceutical companies often overlook it, leaving doctors out of the loop on new medications that could benefit their Parkinson’s patients, she said. As a result, the state lags behind in Parkinson’s treatment, she said.

Another impediment is a lack of specialists. Dooley noted North Dakota has only one movement disorder physician located in the state, although one out-of-state doctor also does come occasionally to see patients. Appointments to see a neurologist can take six to nine months, delaying the helpful use of medication but also slowing access to exercise and other therapies, she said.

Keynote speaker at the symposium was Dr. Robert Cochrane of San Francisco, who has made a study of Parkinson’s since his father was diagnosed more than 25 years ago. With a background in humanities, he has investigated how music and movement can be therapeutic with the disease.

Dr. Rosina Medel, a neurologist with Trinity Health in Minot, also provided information presented at the symposium about next steps to take after receiving a diagnosis of Parkinson’s.

Tanya Gillen, a symposium organizer, said about 75 people attended this year’s event.

“It’s a good educational tool for them,” she said. “It’s important to give knowledge to caregivers and participants dealing with Parkinson’s.”

Gillen said one of the goals of the symposium is to present the resources available because many people don’t know where to turn. It also is important to educate physicians about local resources and encourage them to share information with their patients, but patients also must advocate for themselves and talk to their doctors about additional therapies, she said.

As far as resources, Minot does pretty well, Gillen added. The challenge is overcoming the Midwestern mindset, particularly with older generations, that can keep people from taking the step of getting involved with their own health, she said.

“We as individuals should be very good advocates for our health,” Gillen said.

The Parkinson’s community has no formal organization in Minot, having operated under the charitable status of the MInot Area Community Foundation until recently.

“The YMCA just officially took it under their umbrella, which I am so thankful for,” she said. “I am the chronic disease coordinator for the Y, and so, we’re going to try and build some programs for health and wellness and awareness.”

Jill Schramm/MDN
Steve Hammel, left, Patron Services director at the North Dakota State Library in Bismarck, visits with Julie and Larry Korner of Williston, who collected a variety of informational materials in checking out the booths at the Parkinson’s Symposium in Minot Wednesday, Sept. 17.