It’s not just the physical — it’s the mental too.”

Heather Fitzgerald

Parkinson's support groups

Middletown

Little Compton

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Support for Parkinson’s

Going to the gym is something often taken for granted. Not everyone has the stamina to keep up the pace of an intense workout, especially those living with health issues. Even a low-impact workout might be difficult for someone living with Parkinson’s — a disease that is, unfortunately, on the rise. But the best way to support the health of someone living with Parkinson’s is, in fact, movement — both physical and mental.

“It can often feel like the doctor gives you this horrible diagnosis and a bag of pills, then sends you on your way. But then what?” asked Kristin Matteson rhetorically, reflecting on what happens after someone is diagnosed with Parkinson’s disease. Matteson, an occupational therapist with more than 30 years of experience and a certified PWR!Moves specialist (a Parkinson’s-specific exercise program), has invested her time in creating a support group for people with Parkinson’s. The group is her answer to the “then what” question.

“As a personal trainer, living in Newport, I noticed there were no resources for people with Parkinson’s disease,” shared Matteson. “Exercise is the only thing that slows the progression.” And with that, she decided to start a support group to raise awareness about the benefits of exercise and to share resources to those who need them — all in an effort to inspire movement. 

She recently expanded by creating the first Renew! Retreat event that she hopes will become an annual occurrence. Not only that, her initial group has inspired the creation of a similar one in Little Compton, showing the growing need for resources for those with Parkinson’s in Rhode Island.

“We have 30 people who come to the support group in Middletown each month, and they come from all over the state,” shared Matteson, emphasizing the need for more support. “The state doesn’t track the diagnosis, but we need data to get funding to offer more support.”

According to Matteson, nearly 1 million Americans have a diagnosis of Parkinson’s disease, with someone being diagnosed every six minutes.

Opening more doors for support

On the morning of May 3, caregivers, people living with Parkinson’s, and those with local resources to share with them gathered at the Common Fence Point Arts, Wellness, and Community Center in Portsmouth. The bright white building, which looks like a home from the outside, is lined with large cascading windows that reach from floor to ceiling, letting the sunlight pour in — giving it a bright, open feel, perfect for the mood of the Renew! Retreat event taking place there that day.  

After walking through the wide open doors and entering the event room, visitors saw rectangular tables arranged along the walls, some adorned with white tablecloths that added to the brightness. In the center of the room were more tables — round ones — where guests could sit and watch lively guest speakers talk about available resources. 

The first table to the right was where Megan Daniel, the executive director of the Partnership to Reduce Cancer in Rhode Island, stood smiling brightly as visitors asked to try the skin analysis machine. “Many people don’t know that melanoma is something people with Parkinson’s need to worry about more than others,” explained Daniel, as her colleague, Sarah Gingrich, demonstrated how to use the machine by pretending to be a “patient” while Daniel conducted a skin analysis of her face. 

Though the machine doesn’t diagnose skin cancer, it can highlight age spots, excessive oil, dead skin cells, and sun spots, Daniel explained. “I see white speckles — those are dead skin cells. Maybe you need to exfoliate?” she laughed, directing the playful comment at her colleague. This exchange captured the cheerful, lighthearted spirit of the retreat, designed to inspire and motivate those in attendance.

As Gingrich removed her face from the machine, visitor Colleen Johnston approached the booth with a big smile and asked, “Can I try out this machine?” When asked what brought her to the event, she pointed to her husband, Robert Johnston, sitting at one of the round tables in the center, and said, “My husband has Parkinson’s, and he saw a flyer about it at one of his support group meetings in Middletown.” 

When asked whether she usually attends those meetings, she said, “Oh, I never go to his meetings. I like him to do it on his own — have his own thing, you know.” Colleen enjoyed having her face screened by Gingrich, before moving on to the next table.

Later, while sitting alone at the table, Robert reflected on what he believed to be the most beneficial part of attending the support groups, saying, “It gets me out of the house, and that’s the key — to get out of the house.” His words suggest an understanding that movement, both physical and mental, is essential to his well-being.

Expanding to Little Compton

Heather Fitzgerald, the director at the Little Compton Wellness Center, echoed this sentiment, stating, “It’s not just the physical — it’s the mental, too.”

The support group in Little Compton began over a cup of coffee at Groundswell Cafe in Tiverton with just two people — Cynthia Baker Burns, board president at the Little Compton Wellness Center and George Purmont, who have both been diagnosed with Parkinson’s disease. Fitzgerald was the third to join the meeting over coffee. 

The group has since expanded, with 20 people showing up each week during the six-week initiation period. Burns shared her delight at the outpouring of interest, saying, “We would have been happy with seven or eight but are much happier with 20.” She also noted that the number keeps growing, with attendees coming from all over the state — including places like Tiverton, Middletown, and West Warwick — all within about a 15-mile radius. 

The group sessions utilize exercise, music, writing — all different ways to get people moving their bodies and minds in new directions. “If people are able to think differently, connect in different ways, they grow and learn to express themselves along the way,” shared Fitzgerald. 

Though the six weekly sessions recently concluded, a new series will begin in June and continue on the second Thursday of every month at the Little Compton Wellness Center — which has recently expanded to accommodate the growing number of participants. 

Burns noted, “Although I did not go to all six of the groups, yesterday I went to the last one and I was amazed that everyone continued to show up. At the end, people came up to me and said, ‘This has been such a joyful, helpful experience for me.’ ” She assured them this is not the end of the group, but rather a move toward bigger and better things.