news-807220315-ar-0-0.jpg
Lori and Scott Mangold of Central Point are organizing a support group for people who have been newly diagnosed with Parkinson’s disease. They say new Parkinson’s patients need help as they learn to cope with the incurable progressive nervous disorder.

Parkinson's group formed to help the newly diagnosed

Scott and Lori Mangold felt lost when they learned Scott had Parkinson's disease.

"We were shocked. Dumbfounded. In denial," he said, recalling the day he got his diagnosis back in 2007. "We didn't know where to turn first."

A friend told the retired Central Point couple to find a support group.

"We didn't know what that was," he said.

They eventually connected with a group of Parkinson's patients in Ashland, where they learned how others have coped with the progressive movement disorder that may affect as many as 1 million Americans and 650 Jackson County residents. The experience was so helpful that they decided to start a support group solely for people who have been newly diagnosed.

"The fear kind of goes away a little bit when you know what to expect," Lori Mangold said.

As their knowledge of Parkinson's grew, the Mangolds realized newly diagnosed patients have different problems than people who have struggled with the disease for 10 or 20 years. Parkinson's symptoms also vary tremendously from person to person, and the disease progresses at different rates. Drugs work for some people, but their efficacy fades with time. In its early stages, Parkinson's symptoms may be invisible to everyone but the patient. Someone who has had the disease for years may be confined to a wheelchair or unable to speak.

"The most important thing to remember is that no two Parkinson's patients are alike," Scott said.

The Mangolds contacted Parkinson's Resources of Oregon, a nonprofit organization that assists patients around the state and helps organize local support groups. They discovered a newly diagnosed Medford woman, Rosie Michael, had the same idea. She and her husband, Carl, are helping the Mangolds organize the group.

"People in a newly diagnosed group are all going through the same things," Michael said.

She said encountering the advanced symptoms of long-term Parkinson's patients (such as tremors, rigid limbs, impaired balance, excessive saliva) in a support group can be intimidating for people who are just starting their long journey with the disease.

"It's not a pretty sight," Michael said.

The disease's unpredictable nature makes it especially frightening, said Anna Sanger, resource coordinator for Parkinson's Resources of Oregon.

"It's better (for new patients) to be with people who have just been diagnosed," Sanger said. "You don't know what kinds of symptoms you're going to have, and how they're going to progress.

"New patients have more in common with other new patients," she said. "They can talk about what this is going to mean for them, how they can plan for it, and how it will affect their career."

The group's first meeting has been scheduled for 11 a.m. Aug. 16 at the Smullin Center, 2825 E. Barnett Road, on the campus of Rogue Valley Medical Center. The plan is to meet the third Saturday of every month.

No one will be turned away, but the group plans to focus on the specific problems of people who have been diagnosed during the past three years, such as the role of diet and exercise, medicines and helpful books.

"There's just a lot of ways people can help themselves if they have a support group," Lori Mangold said.

For more information, call Rosie and Carl Michael at 779-3429, or e-mail Lori Mangold at lori@pawsitivepress.com.

Reach reporter Bill Kettler at 776-4492 or e-mail bkettler@mailtribune.com.

Share This Story