Living with Parkinson's

In the 1980s, a Dutch horticulturist with Parkinson’s disease developed a tulip that was deep red and edged with white — a masterpiece he would name after Dr. James Parkinson and one that would also later become a national symbol for the disease in April 2005.

Now, every year, just as the pink ribbon and month of October are to breast cancer awareness, so are the cardinal-colored tulip and month of April to Parkinson’s awareness. And one Flathead County group has been promoting awareness and providing support for those living with Parkinson’s for a decade.

The Flathead Valley Parkinson’s Support Group was founded in June of 2009. According to co-founder Lois Wagner, at that time there was no local support system in the valley and after her friend Inga Myers was diagnosed with the disease, the two decided to fill that need.

The group serves as both an educational outlet and a support group for people with Parkinson’s and for their personal support system as well, whether that be friends, family or caretakers. Wagner said at its core, the group exists for the simple purpose of social interaction, which she noted can sometimes be a challenge for people with Parkinson’s.

“Because there are movement and voice challenges, people often start isolating,” Wagner said. “One of the biggest things we do is we provide social camaraderie. People can all come together and not feel self-conscious about their tremors or other symptoms.”

The American Parkinson’s Disease Association estimates 1 million Americans are living with Parkinson’s and more than 10 million worldwide have the disease.

The neurodegenerative disease is most commonly known for its movement or motor-related symptoms, often referred to as tremors, but there are other non-motor-related symptoms, including depression, disruptions in sleep hygiene and cognitive impairment. The disease is complex and affects each diagnosed person a little differently, and as different symptoms become more advanced, frustration or despondence can often set in.

But leaders in the support group hope to show members that life with Parkinson’s can be just as meaningful and fulfilling as life without.

“We can’t just sit around lamenting about what we can and can’t do anymore,” said group member Ellen Metzger. “It’s a challenging disease, but you just have to find a way to adapt. You have to find something you can get yourself involved in.”

Metzger joined the group in 2015 after she and her husband moved from Troy to be closer to a Parkinson’s doctor. Making the move from her beloved country home to the middle of Kalispell was the first of many times Metzger would adapt to her Parkinson’s.

She was diagnosed in 2005 and after her tremors developed, certain hobbies such as gardening and sewing became increasingly difficult. But she now gardens in tall standing barrels as opposed to on her hands and knees and she uses specific tools and machinery to help her with sewing and quilting. And she seems to never lose an ounce of positivity — a trait she says she shares with other members of the support group.

“It’s nice to have other people on this journey that we can compare notes or just smile at each other,” Metzger said.

The product of her adaptability comes every April in the form of a large quilt ready to be raffled off in support of the group. Every year the colors are different, with this year’s displaying pops of teal and beige. But every year Metzger is sure to sew the outline of the famed Parkinson’s tulip into the fabric, blending it in from corner to corner.

Metzger said it took her about a month to make.

The quilt was also one of the highlights of the group’s most recent meeting on April 10. It was unveiled on a table toward the back of the room, collecting comments from every passerby. The quilt and subsequent raffle were discussed right before Wagner launched into the order of the afternoon.

She started by asking each person to say one word that described how they were feeling that day. There were nearly 50 attendees pushing the space to its capacity and almost all of them answered “thankful,” “excited,” “hopeful,” and other synonyms for gratitude and optimism.

The group meets on the second Wednesday of every month at the Gateway Community Center in Kalispell. Each gathering features different guest speakers such as local doctors or therapists who supplement the educational portion of the meetings, and each one is kicked off with a stretch or exercise, which Wagner said is extremely important for people with Parkinson’s. The group also connects members to other regular exercise resources in the valley, including classes at the summit in Kalispell, which are partially taught by Metzger, and Rock Steady Boxing, an advanced rehabilitation center that specializes in helping people with Parkinson’s.

But most importantly, leaders of the group are sure to establish a welcoming atmosphere and one that promotes positivity and connectivity.

“These folks have been diagnosed with something that is very challenging to live with, but we encourage people to continue to really, really live and connect and understand that they have something both to offer and to receive,” Wagner said.

For more information about the group and about other resources for people with Parkinson’s in the valley, go to www.facebook.com/Parkinsonsofflatheadvalley/ or contact Lois Wagner at 406-871-3767.

Reporter Kianna Gardner can be reached at 758-4439 or kgardner@dailyinterlake.com