LA PINE — As bands played Sunday at an outdoor stage and a nearby patio, Greg Reynolds rode his wheelchair up to the adults and children dancing in a field, drove by rows of vendors’ crafts and wound up in a woodworker’s tent talking shop.
The former cabinetmaker and his 6-year-old grandson had struck up a friendship with Dan Moore, who owns Moore Knotty Creations, during a four-day outdoor music festival in La Pine that raises money to fund research into multiple sclerosis.
“It’s been great, cuz I get to meet people like him, very inspirational,” Moore said of the event and of Reynolds.
The fourth annual Newberry Event Music & Arts Festival to Defeat MS ran from Thursday through Sunday at DiamondStone Guest Lodges in La Pine.
“MS is just kind of the silent disease,” said Reynolds, who has had the disease for about 30 years. “You adapt as long as you can adapt and then you succumb.”
MS is a disease of the nervous system, in which the immune system attacks healthy cells, slowing communication between the brain and body and causing various problems including blindness, muscle weakness, fatigue and trouble with coordination and memory. People with the disease can lose the ability to walk or speak. MS can progress quickly or slowly and its impacts can vary greatly among people. Its cause is unknown, and there is no cure.
“We don’t even know what causes it,” said Gloria Watt, who has run the DiamondStone Guest Lodges for more than 20 years with her husband, Doug. “So that’s why we do this.”
The “this” is the four-day music festival that has provided about $9,000 in research money for the Oregon chapter of the National Multiple Sclerosis Society from the past three festivals. This year, bands included Euforquestra, Andy Frasco & the U.N., Zahira, Vokab Kompany, The Lil’ Smokies, Yogoman and several others. Food vendors offered Greek, Italian and Himalayan meals, plus local brewery and distillery drinks. Vendors sold handmade jewelry, pottery, honey and leather goods.
Many attending also camped out under the aspens and pines surrounding the lodge.
Doug expects next year’s event to grow further.
“It needs to be a solid part of this community,” he said of the festival.
He has found that it offers a way to proactively address MS by helping people to care and giving them the idea that they can do something about it.
“You’ve got to make people want to participate,” Doug said. “Music is such a common bond.”
Gloria, now 56, showed symptoms of MS at 19 and was diagnosed at 24. She used to ski and ride horses and motorcycles. She has worked as a real estate agent and for the U.S. Forest Service and the Bureau of Land Management, doing range surveys. But she has trouble walking now and uses a Segway to get around more easily.
Most people don’t realize the devastation that MS causes, Doug said, noting his wife could still ride a motorcycle and snowboard 10 years ago. And the symptoms can vary day by day in their severity. Gloria calls it an invisible disease.
When people become disabled, they can’t get around and can wind up “tucked away in corners,” she said. “The world doesn’t see you.”
Reynolds, a 57-year-old resident of the Three Rivers area, also noted “how hidden it is.” For instance, when he would use his handicapped parking permit, he did not always appear sick.
“I got some dirty looks,” he said of passers-by who saw him using the reserved parking spaces.
And he noted its unpredictability. For instance, he had serious trouble with his right eye for six months, then suddenly got his regular vision back. Reynolds praised the festival, the first he’s attended, and plans to return next year.
“It gives me some hope that there’s people out there that know the existence and the destructive nature of the disease,” he said.
He noted how at 54, he had to get a walker — not something he wanted to do but had to because of the falls he took and the pain of hitting the ground hard. Then there’s the economic impact of thousands of dollars per month in medication costs. Plus the loneliness and depression.
“We tend to become isolated,” he said of those with MS, noting it’s hard for others to watch the changes to the person they know. “Your longtime friends don’t want to see you disintegrate.”
Reynolds has a hard time with support groups and with focusing too much on the disease.
“I know I have it. I know my limits. I don’t want to dwell on it,” he said.
He and the festival crowd instead focused elsewhere.
“It’s all about having some fun,” he said.
— Reporter: 541-617-7812, email@example.com