Marlane Argianas of the American Parkinson Disease Association, from left, with Ilene Sumberg and Beth Blake at Atria Darien on July 24.
DARIEN — When Elizabeth Harmon was first diagnosed with Parkinson’s disease in 2012, she immediately joined a local support group.
Through the group, the former St. Augustine, Fla., resident had once-a-week exercise sessions with trainers from the University of St. Augustine, as well as support from other community members with the same disease.
“That’s where I became involved,” she said. “It was a great group of people with a great leader. I was very much into it.”
When Harmon moved to Atria Darien last July, she found the senior living center lacked the same sort of support group. So she went to Ilene Sumberg, the center’s resident relations director, and Beth Blake, the engage life director, to change that.
Parkinson’s disease affects the central nervous system, often affecting a patient’s movement. Symptoms of Parkinson’s include tremors, muscle stiffness and slow movement. It can also cause sleep problems, constipation, anxiety, depression and fatigue.
There is no cure for Parkinson’s, but there are ways to treat it. Effective treatment methods are among the topics shared in the Parkinson’s support group Blake and Sumberg formed at Atria Darien after hearing from Harmon. With the help of Marlane Argianas, program coordinator at the Connecticut chapter of the American Parkinson Disease Association, the women formed a support group for not only Atria residents with Parkinson’s, but other local patients and caregivers. The group meets the second Friday of every month at 11 a.m. at Atria Darien for an hour-and-a-half and kicked off June 9.
Similar support groups can be found throughout Fairfield County, including in New Canaan, with around 100 members.
“The thing about Parkinson’s is no two people are alike,” Argianas said. “There are motor and nonmotor symptoms. It helps for people to come together and talk about their lives.”
For Harmon, she is thrilled to once again have a group of people she can turn to like she did in Florida.
“The people I met were so wonderful, and now I’m finding the same thing happening up here,” she said. “We’re coming together as a support group. It’s tremendous.”
The group, co-facilitated by Sumberg and Blake, shares tips, friendship and information on the disease. They have heard from guest speakers and health experts about how to manage their Parkinson’s. There’s a heavy emphasis exercise, which Argianas said is the only thing that can slow the progression of the disease, and a walking group has been born out of the group’s first two meetings to help residents stay active.
Both Sumberg and Blake received training from the APDA to lead a group and have a manual to help them guide the group, as well as additional tools and literature.
So far, the Atria group has attracted people from Trumbull, New Canaan and Norwalk. The group has had around 15 people per meeting with a mix of people living at Atria and caregivers from around the community. Friends of patients, people with Parkinson’s symptoms and private caregivers from within Atria have also been attending to learn more about the disease.
“Having this here is a way to say we understand,” Blake said. “And that’s the hallmark of us. We respond to people’s needs.”
Each meeting has a particular theme, set by Sumberg and Blake.
“The idea is to have a theme and with that, people can respond,” Sumberg said. “I think it’s important to structure the group and stay open to other directions. I think people look to the group for structure.”
The first meeting was introductory and the second focused on the power of dance in helping with Parkinson’s. In August, Dr. David Russell will discuss a new medication meant to help with hallucinations and delusions that some patients experience.
http://www.dariennewsonline.com/news/article/Atria-Darien-offers-Parkinson-s-support-group-11731101.php
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