Multiple Sclerosis awareness in the ‘Root

by John Dowd

April is National Volunteer Month, and the Bitterroot is not short of volunteers that go above and beyond for the community. However, given that last month was Multiple Sclerosis (MS) Awareness Month, it seems fitting to recognize the work done by two Bitterroot women working to make a difference for Ravalli County residents suffering from that disease. 

Jackie Peterson and Jenna Wright started the Bitterroot MS Support Group in order to help their fellow Bitterrooters. Both suffer from MS themselves and in fact they met at a support group in Missoula. At the time, this was the only support group close by. They immediately became friends, realizing they were both Bitterooters. After attending meetings there for some time, several factors added up to lead them, especially Peterson, to consider starting their own group. 

Part of the nature of the disease is an eventual difficulty getting around. MS is a chronic neurological autoimmune disease that attacks the brain and spinal cord. It works by eroding the myelin sheaths, or the cells that form them, around the nerves. This causes, essentially, “misfiring,” and general havoc in the way the brain controls the body. 

According to Peterson, “In some people, it starts in the spinal cord, and in other people it starts in the brain.” In the end, the disease results in a lack of quality of life, putting about a third of people in wheelchairs. Peterson herself has difficulty walking due to the disease affecting one of her legs. The disease has many symptoms, and can be difficult to diagnose due to similarities with many other ailments. 

Some symptoms include numbness or tingling, weakness, blurred vision, mood changes, difficulty with general body functions, vertigo, memory troubles, difficulty walking and many more. According to both women, the disease affects women more often than men, and more Caucasians than African Americans. They also said, most people discover they have MS between the ages of 20 and 40. The only options are disease modifying treatments to slow or possibly halt progression. However, there is no cure, and these treatments can be outrageously expensive. It can be a big pill to swallow and as the women said, many are not even aware of what MS is until they are connected to someone with it.

“That’s really why we are here, education,” Wright said. According to her, there is really “a lack of knowledge out there” about the disease. Wright worked in the health sector for over 30 years, and she did not even know what it was when she was diagnosed. 

Eventually, the leader of the Missoula support group, who also has MS, progressed in the disease to the point where they could not drive at night anymore, so that group’s meetings were moved to mid-day on weekdays. According to Wright and Peterson, this made it very difficult for many in the Bitterroot Valley to be able to make those meetings, including Wright. “Going to Missoula is hard on me, now,” she said.

This was when the idea of forming their own groups started. Both decided there was a great need for one in the Bitterroot. According to Peterson, many still work, so doing so would “give another option for those in the Bitterroot Valley, and even to give those in Missoula another option if they can’t make lunchtime meetings.” With MS being such an unpredictable disease, and affecting everyone so differently, it seemed like a good option to start a group with a better meeting time, especially with attendees having to juggle family responsibilities, kids, and careers.

When asked about their support group, the women said the meetings vary every month. They really just want to create a safe space for attendees.

“We try to help those that come in the ways they need,” Peterson. “We want to make sure everybody is being supported in the way they want to be supported,” echoed Wright.

Their first meeting was in October of 2023, and so far their largest group has been around 12 people. Their meetings take many forms, with some general open meetings where people sit and talk about what is going on, challenges, and really whatever people want to talk about. They also have many guest speakers covering all kinds of topics where the disease affects life, from counseling to speech, and more. 

“It’s nice to sit and connect with other people who have experienced the same things,” said Peterson, but the women added that it is not only people with MS that attend. Both women spoke on how there are also spouses and family members that regularly attend. These people often come, either in direct support for a loved one with MS, or in remote support. For example, in one case, they spoke about a member whose daughter has the disease but lives out of town. This person comes to learn and understand the struggles of someone else.

“It doesn’t only affect us,” said Wright. She described how it can affect family, friends, coworkers and anyone else in someone’s life, and she added, often, “we need a lot of entities to make it through the day.”

“It’s scary,” when a person is first diagnosed, said Peterson. “Just hearing somebody else’s story can mean a lot. No one should be alone.” She explained that depression can be a huge part. Even though the disease is not often fatal, it is a life changing diagnosis.

Peterson said she needed that support herself, especially early on. “That’s why I do it.”

Wright grew up in the Bitterroot and having support in the area means a lot to her. “I feel safer driving to Hamilton,” she said. 

To start the group, Peterson did a lot of training through the National Multiple Sclerosis Society, and their group is sanctioned through the organization. Peterson wanted to make people aware that there are many resources available through the organization, including online groups for those who can’t travel, connections to find physical groups to meet with in person, general information, financial assistance and much more. “It’s amazing, all the things the society does,” said Peterson. 

The Bitterroot MS Support Group next meets on April 17 at the Coffee Cup Cafe gallery, 500 S. 1st Street, in Hamilton. The meeting starts at 6 p.m. For more information about the group in the Bitterroot, interested parties can contact Peterson at (970) 518-2938 or via email, at [email protected]. Information through the National Multiple Sclerosis Society is available on its website, www.nationalmssociety.org.