Local group offers support, education for those living with Parkinson’s disease

During an online meeting in March, one member of the Flathead Valley Parkinson’s Support Group asked Bill Rasmussen how he handles not being able to do some of the things that were once second nature to him.

The woman, an avid swimmer, explained to Rasmussen, the co-founder of the sports network ESPN and guest speaker at the meeting, that flip turns have become more challenging in recent years. That minor frustration aside, she said her health is in overall great condition, she just “happens to have a disease that is inconvenient.”

Rasmussen readily shared this advice: “You have to focus on what you’re able to do and go from there. I know the days ebb and flow and some are harder than others, and instead of saying ‘this day is kind of rotten,’ we have to find something to be really positive about.”

Rasmussen — along with the swimmer and the other 20 or so individuals in the recent meeting — is living with Parkinson’s disease, a disorder in the body’s central nervous system that can impact movement, often leading to visible symptoms such as tremors. He still enjoys golfing, even though his swing isn’t quite what it used to be.

According to the Parkinson’s Foundation, more than 10 million people are living with the disease worldwide. And recent studies show nearly 1 million people have been diagnosed in the United States alone, making it one of the most common neurodegenerative diseases in the country.

These facts are not lost on members of the Flathead Valley Parkinson’s Support Group, which meets at the Gateway Community Center in Kalispell. As group organizer Marjory McClaren likes to remind participants, the disease is surprisingly common and certainly should not be a source of shame or embarrassment.

“I don’t want people to feel like they should hide their Parkinson’s and not be a part of things like this group [Flathead Valley Parkinson’s Support Group],” McClaren said in an interview with the Daily Inter Lake in late March. “We didn’t ask for this disease, but it’s here, and there are positive ways to live with it. The sooner you get plugged in with others that can be encouraging, the better.”

For Flathead County, that local resource is the support group, which was founded in 2009 by Lois Wagner after a friend was diagnosed with Parkinson’s and there was no local support group already established. The group’s first meeting drew a couple of dozen participants, and over the years, that number has grown to include more than 50 regular members.

“I knew after the first meeting that it was something we would have to keep doing. We all came together as strangers but quickly realized we were all sort of carrying for one another,” said Wagner, who hasn’t missed a regular meeting since the group launched, barring one time a scheduled picnic got rained out.

THE GROUP’S monthly meetings often feature events or discussions with doctors that focus on helping patients with Parkinson’s or people like Rasmussen, who served as the guest speaker in March. These speakers embody the educational aspect of the program by offering insight into various research and experiences surrounding the disease.

The organization also offers a separate support group for caretakers, which was founded more recently and is facilitated by Lynn Woods.

While Woods doesn’t have Parkinson’s herself, a friend of hers was diagnosed a few years ago. She said the caretakers group has been instrumental in helping her, and many others, support their loved ones in a host of ways.

“Each person needs to be cared for in different ways, but the group really focuses on how we can look after them when they need us most,” Woods said. “We share a lot of laughs and sometimes tears, but really, it’s good to know that other people understand what it’s like to be a caretaker.”

McClaren was diagnosed three years ago after seeing a doctor for what she thought had been carpal tunnel syndrome. Her caretaker has come in the form of her husband, Fred Longhart.

McClaren currently does not have any visible symptoms of Parkinson’s, such as tremors, so Longhart has taken a more verbally encouraging approach to his caretaking.

“Marjory doesn’t want to be known as a person with Parkinson’s named Marjory. She’s just Marjory, and oh, by the way, she has Parkinson’s,” Longhart said. “We try not to dwell on it, but I want to be there when she needs help. I’ll always be honest and try my best to be gentle when talking to her about it.”

Aside from bringing in guest speakers and making sure caretakers have support, group leaders also focus on offering plenty of exercise classes, including Rock Steady Boxing, which is a form of boxing tailored to those with Parkinson’s.

For example, the group’s website shows several exercise classes are scheduled to take place both in person and over zoom in April — a month recognized as National Parkinson’s Awareness Month.

The Parkinson’s Foundation highlights research that shows how exercise improves gait, balance, tremor, flexibility, grip strength and motor coordination.

One study in particular found that people with the disease who exercised regularly for 2.5 hours a week had a smaller decline in mobility and quality of life over two years. Another University of Pittsburgh study found that exercise helps reduce the vulnerability of dopamine, which influences mood and regulates body movements. Scientists believe a lack of dopamine is a primary cause of Parkinson’s and comes from a disorder of nerve cells in the part of the brain that produces the chemical.

MCCLAREN, RASMUSSEN and others all agree that exercise is paramount, and can testify to its importance. They also emphasize that exercise doesn’t have to be intensive.

Unbeknownst to many, Parkinson’s symptoms range from person to person, which is something that makes diagnosing the disease a challenge. And for those with more advanced symptoms, extreme cardio, weight lifting or other strenuous activities can be challenging, so they are encouraged to throw themselves into activities they are capable of doing.

For longtime support group member Ellen Metzger, movement is as simple as crafts or cooking. Metzger, who exhibits a noticeable body tremor, was diagnosed about 15 years ago, but continues to quilt and cooks for various potlucks, among numerous other activities.

“You just can’t let it slow you down. If you can’t do what you used to, find something else,” Metgzer said in a recent interview, adding that she has always been open about her diagnosis. “I just decided to embrace it and I’ve tried not to let it change too much. I told my friends and family the minute I knew I had it.”

Group leaders acknowledge not everyone is quite as open and positive as Metzger, but it is their hope that regardless of one’s comfort level with their diagnosis, they will consider joining the support group.

“This is all about living and living well with Parkinson’s. You don’t really die from the disease, you die with it,” McClaren said. “We don’t want anyone to be isolated with Parkinson’s. There are plenty of people in the community that can offer support in different ways and this group is a good place to make those connections.”

To learn more about the Flathead Valley Parkinson’s Support group and to view upcoming events go to https://flatheadvalleyparkinsons.com/ or call 406-250-5577.

Reporter Kianna Gardner may be reached at 758-4407 or kgardner@dailyinterlake.com