Parkinson's support group launched in Prineville
People in Crook County who are suffering from Parkinson's Disease have long gone without a local support group or opportunity to meet with others facing the affliction.
That has recently changed with the formation of the Prineville Parkinson's Support Group, which was launched this past fall by Linda Arian and others like her who deal with the disease daily.
She pointed out that Prineville is supported by other resources in the state and region, but the one thing the community lacked was a support group where people with the disease and their family members could gather.
"Parkinson's Resources of Oregon is based in Portland and then they have satellite offices," she said. "They have one in Bend. The coordinator there serves Central Oregon and Eastern Oregon and there are support groups in different cities, but we didn't have one in Prineville yet."
That changed in October when Arian and others started the local group, which now meets every second Friday of the month at 1 p.m. in the Parrish Hall of St. Joseph's Catholic Church. Seven people attended the first meeting, and it has been growing ever since.
"We are just trying to get the word out there so people will know," she said.
According to Parkinson's Resources of Oregon's website, Parkinson's disease is a progressive disease that impacts the brain and nervous system. It occurs when nerve cells in the brain don't produce enough dopamine, a chemical that's vital to the ability to move. Many people experience slowed movement and tremors along with muscle stiffness and changes in balance. There may also be nonmotor changes including anxiety, depression or sleep disruptions.
Arian points out that the tremors are only a piece of the disease and that otherwise routine things, like having a conversation about the group, can be challenging because her brain struggles to verbalize her thoughts as they come.
"People could look at me one day and I am functioning really well — you can't tell anything is wrong with me," she explains. "Then the next day, I am shuffling slow and can hardly stay on my feet."
The main goals of the new support group are to educate people about the disease — guest speakers are planned — and to give those who have it a chance to meet.
"People who have shown up so far have made it real clear that they want to be able to check in with each other," she said.
Arian hopes to see the group continue growing as more people learn that a local support option is available to them. She learned from the Parkinson's Resources of Oregon coordinator that it has 60 Crook County residents on its mailing list, so there could be more people who need the group's support.
"I was surprised," she said. "I guess there are a lot of us out there."
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