Parkinson's Resources of Oregon reports that 1% of adults older than age 60 are living with Parkinson's disease.
"Parkinson's is the second most common neurological disorder in the country, just behind Alzheimer's," said Parkinson's Resources of Oregon Development Director Lauren Tietsort, who is based at the Portland office. "It affects people as broadly as the differences in people."
The nonprofit organization provides education, community and support to those living with Parkinson's disease in Oregon and Southwest Washington.
The people of Parkinson's Resources of Oregon have served Oregon residents since 1980 out of their Portland-based offices. Recently, they increased their service offerings to the folks in Central Oregon when they opened an office in Bend, and next week, they will host their first education session in Prineville.
Parkinson's Resources of Oregon and Dr. Craigan Griffin, a neurologist at Pacific Crest Neurology in Bend, will present "Parkinson's Education: Basics and Beyond" from 2:30 to 4 p.m. Thursday, May 30 at Room 1868 in Prineville.
Parkinson's disease affects the neurological system and can manifest itself in tremors and a stiffness in gait.
"It even halts their gait, so they can be mid-step and frozen there," Tietsort said. "It can also have cognitive changes, so executive functioning can be less than they were used to all their lives."
The disease typically afflicts people around age 60, but it can happen as young as age 30.
"We are seeing an increase of diagnosis in younger people as medical technology improves diagnosis. People could have been living with the disease for years and not even realizing it," Tietsort said. "Maybe they had something going on in their gut, or maybe they weren't smelling as well. Those are early indicators that we didn't know about."
Parkinson's Resources of Oregon reports that an estimated 25,000 people in Oregon and Southwest Washington live with Parkinson's disease.
"You don't die from Parkinson's. You die with Parkinson's. So, when you get a diagnosis of this disease, you have to learn how to live well with it," Tietsort said.
That's where her organization comes in.
"When you get this diagnosis, it leaves you spinning. You don't know what to do with it. It can be a world full of more questions than answers," Tietsort said. "That's what Parkinson's Resources of Oregon is looking to address — helping communities and individuals live well with Parkinson's."
In July 2017, the organization opened a Central Oregon branch in Bend, offering a variety of services and resources. They have support groups, wellness classes, a helpline, education programs, social work services, a bi-monthly newsletter, a lending library and long-term care training.
They estimate they are serving roughly a third of those with Parkinson's disease in Central Oregon.
"We're really looking to see how we can help bridge that gap to the rest," Tietsort said.
So, the Prineville educational event is one way they are looking to connect with and offer services to those in the Crook County who are dealing with Parkinson's disease.
The program is specifically designed for Parkinson's disease patients and their loved ones, but anyone working in the healthcare field or with Parkinson's patients is also welcome.
During the event, Dr. Griffin will discuss the disease, including the initial symptoms and signs, the typical diagnostic testing, and management of the less common associated symptoms that arise further into the condition. This will be followed by a question and answer period.
Griffin has practiced in Bend since 2005 with a focus on chronic adult neurologic diseases and particularly in Parkinson's disease with some of the more advanced treatments, including the dopamine pump, or Duopa device, and the deep brain stimulator.
Preregistration is encouraged to attend the free presentation.
Individual and corporate donors and foundation grants fund the nonprofit. They receive no federal or state funding.
Each year, they put on a peer-to-peer fundraising walk. In Central Oregon, the 1K and 5K walk begins at 9 a.m. Sunday, Sept. 8 at Drake Park in Bend. Participants get sponsors from friends and businesses in order to raise money for the Central Oregon branch of Parkinson's Resources of Oregon.
The walk also strives to bring awareness to the services they offer.
"There's power in knowledge," Tietsort said. "A disease that seems to be sucking the power out of the way you live life — you can take that power back with education and support and learn to live well with Parkinson's disease."
"Parkinson's Education: Basics and Beyond"
Presented by Parkinson's Resources of Oregon and Dr. Craigan Griffin
Date: 2:30-4 p.m. Thursday, May 30
Place: Room 1868, 152 NW Fourth St., Prineville
Preregister: Pro.Eventbrite.com or call PRO Program Coordinator Carol Pfeil, 541-668-6599
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