Like-minded individuals

The Parkinson's support group in Minot began in 2004, started by Eilene Emly and her late husband George, and has since grown to include 75-plus members. The group provides an opportunity for individuals with Parkinson's disease and their family members and caregivers to learn about the condition and share social support.

"We didn't think it would grow this big, when we just started out with coffee and cookies. With this group, we keep it hopeful, and I think that's why our group is still going," Emly said.

"It helps to have that support of knowing that other people need to understand everything better, too, just like you do. To me, the disease was very confusing to start with," Cecilia Howe, a Parkinson's support group charter member, said.

Article Photos

Eilene Emly, founder of the Parkinson’s support group in Minot, left, and Cecilia Howe, a charter member of the group, show a copy of the book the group has donated to area schools with the help of grant funding.
Katina Tengesdal/MDN

The Parkinson's support group is open to anyone with Parkinson's and their family members, friends, and caregivers; and those who are unable to attend the meetings can receive Parkinson's information in the mail from the group.

The meetings are helpful because individuals can socialize with like-minded individuals, and they have the opportunity to hear about available community resources.

"When you're dealing with it, sometimes you keep thinking, what next. When people who have a new diagnosis want to talk to me about it, I think they feel like 'You've already gone through this, so you know,' " Emly said.

Group camaraderie

Individuals in the group feel they have a safe place to visit, and share similar stories. Several members of the group have lost their spouses to Parkinson's, but continue to attend meetings for the support.

"Those who have lost spouses, we're supporting each other, too. I often tell them, you did the best you could do, it doesn't mean if you had done something differently, you could have saved your spouse," Emly said.

Cecilia Howe, whose husband is currently in the nursing home due to Parkinson's, still attends the meetings and keeps him updated on the happenings there.

"If they spill at the meetings, it doesn't make any difference. Other people understand. He'd be so embarrassed if he spilled," Howe said.

"The meetings really do have a social part, and that's part of the support," she added.

For many individuals with Parkinson's, the condition develops slowly, and they gradually become unable to do things they once loved in the past.

"So many people are losing their dreams, or selling their cattle... and everything they had planned changes," Emly said.

"I was hoping there was a cure, not realizing that there wasn't. It was quite gradual, but after awhile, the walking and the movements deteriorated, and then there was the falling," Howe said.

The group members can provide listening ears during these life transitions, with many group members and speakers providing hope and comfort.

Group members and speakers can also help by letting individuals know about the community resources that are available to them. They also speak about different medications and physicians who have helped.

Solutions for each individual can differ highly, even from day to day.

"You might think you've got a good day coming, and you turn around and they're on the floor. It's unpredictable by minutes or hours, it can change," Emly said.

"Medication causes slowed reactions, and he couldn't drive - that was a hard one. He's accepted it now, but it is like taking someone's independence away," Howe said.

Mostly, the support group just helps individuals stay connected.

"Many people have said that they needed a (Parkinson's) support group badly, and it's worth it to keep going to meet these people," Emly said.