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The Power of Support Groups

Monday December 14, 2020

NW Parkinson’s Foundation connects over 100 support groups across the region. We promote the network of Parkinson's support groups, connect individuals to their local group, and provide training and logistical support for new and experienced group facilitators. In turn, each facilitator leads their group by planning agendas, hosting meetings, and supporting fellow caregivers and people with Parkinson’s.

We spoke to a few facilitators from across the region about their group and experiences. We asked: what motivates you to take on a position like this, and what are some things that you’ve discovered through your experiences? Some facilitators have Parkinson’s themselves, while others are caregivers for their friends or family. Each has their own story of how they came into the Parkinson’s community, but one particular message is overwhelmingly clear: living with Parkinson’s may seem daunting, but there will always be a community there to support you. Being part of a support group is being part of a community, a place where people with Parkinson’s and caregivers are able to connect with one another and find joy and hope through their journeys.

MEET BILL

Support groups are even more crucial now during COVID-19. As Bill puts it, “This is a really tough time, because one of the symptoms we experience is isolation. Without the ability to gather and meet together, it impacts all of us in different ways. When you take the loneliness and isolation you experience from having Parkinson’s, the pandemic really just exacerbates it.”

Bill leads a support group in Richland, Washington, and one of the prevalent issues for his group is access to resources, especially when there aren’t very many Parkinson's specialists nearby. That being said, one of their group’s primary goals is to spread awareness about local and community resources.

MEET MAYNARD

Another facilitator, Maynard, has very similar experiences. Maynard facilitates a support group in Homer, Alaska, which is a relatively small town of 5,000 people. Like many other support groups, keeping the same connection and access to resources poses a challenge, especially in the wake of this pandemic. However, the closeness between his group still remains. In fact, as a facilitator, Maynard’s motto is to lend a sympathetic ear. Oftentimes, the meetings are simply discussions - connecting with one other and sharing each other’s stories.

Noting this, Maynard explains, “It’s surprising how my whole life [as an engineer] was about fixing things, and I was never so good at relationships. I wasn’t the one that people went to for comfort and I couldn’t so much provide sympathy. Of course, now there’s been a shift and I’ve been able to find satisfaction in helping and relating to others. Helping others to find a cure and create bonds is something that gives me satisfaction.”

MEET VERA

The idea of forging connections and becoming stronger through one’s experiences is a shared value. Vera leads a support group in Caldwell, Idaho, and she is one of the many who exemplify what it means to turn a challenge into a strength. Since being diagnosed with Parkinson’s over 18 years ago, she has found solace in art and connecting with her fellow Parkinson’s community.

When asked about how she gets through tough days, Vera replied thoughtfully, “I just try to use whatever God has given me to encourage other people and find their niche. Whether it's creativity or something else, there's always something to be found. There are some things that happen out of our control and we need to deal with it. You can just let it happen or you can fight it - and we can’t cave in.”

Despite whatever challenges may arise, the most important thing is to embrace the change and strive to grow and seek the best through every experience. Throughout all the support groups with different stories and different people, what connects them is their Parkinson’s journey and personal connections.

MEET MARJORY

Marjory and Lynn are co-facilitators from Kalispell, Montana, for People with Parkinson’s and Carepartners. The dictionary definition of a dynamic duo would probably have a picture of Marjory and Lynn! By working together, they are able to achieve not just a fantastic support group, but a deep friendship and mutual respect.

Marjory says, “What stands out is how much [Lynn] cares about people struggling with Parkinson’s and how much she cares about the caregivers. And that’s the most important part of this whole thing for me - I really love and care about the people I’m with and [Lynn] does too."

MEET LYNN

Lynn describes a support group like a family, “When you go to a big support group meeting, you do fall in love, and I say that with all my heart. These people are so wonderful, and they’re so wonderful together and care about each other. They are all living different lives but each has such understanding of one another. There is a security in all of what we’re doing together, and this is the honest truth - we have such an ability to find our answer when we can talk to others. Your part in what we are doing is something priceless.”

Throughout our lives, we hear stories of courageous people who fight against all odds to change something in an impactful way. But oftentimes, it takes more courage to accept change than it does to deny it. When it comes to Parkinson’s, the most important thing is to embrace this change, and through the experience, be able to connect with ourselves and others. When it comes to making a difference, the impact doesn’t have to be momentous and pivotal - in fact, it rarely is. The Parkinson’s community is built on relationships and connection, being able to support one another and give back to the community. Small acts, like hosting coffee hours and books clubs, hosting online meetings or speakers, or simply spreading awareness and educating yourself, are what keeps the NW Parkinson’s community thriving and touching the lives of so many.

About our Volunteer Author

Hi, I’m Kathy Shao, a freshman at Mercer Island High School. I enjoy being outdoors, spending time with my friends and family, and eating good food while watching Ratatouille!

For information on a group near you, a virtual group, or to start a new group, please contact Sarah at 206.946.6517 or Sarah@NWPF.org.

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