How a Parkinson’s caregiver found fellowship in a support group
Sometimes the best allies are those who 'get it'
When Diana Dunetz’s husband was diagnosed with Parkinson’s disease in 2019, she didn’t know what to think. First, there was denial. How could something like this happen to her husband? Then there was apathy, and after that, loneliness, which came unannounced and was brutal in its ferocity.
“I found myself personally needing someone to talk to,” Dunetz told me during a recent conversation by phone.
As she watched her husband struggle with his new reality, her own circumstances started to sink in. She began sifting through online resources, looking for a way to fill the emptiness she felt after the diagnosis. After attending a few seminars, she felt more informed. But the loneliness lingered.
Then one day, she discovered the Parkinson’s News Today Forums, where patients and caregivers were asking questions and learning from one another. This discovery was a step in the right direction and provided Dunetz an outlet to ask questions about the disease. But she still longed for camaraderie, which prompted an idea: What if she could organize a monthly Zoom call for caregivers? In the spring of 2022, that’s exactly what she did.
Connecting with people who understand
In the forums, Dunetz asked members of the community if they’d be interested in forming a virtual support group. She was surprised by the response: People from around the world expressed interest in joining the monthly caregiver call. As it turns out, others needed camaraderie, too.
A year after the group’s inception, up to 14 people attend each month.
“There’s only so much you can share with somebody who isn’t familiar with [Parkinson’s],” Dunetz said. “While friends are sincere in their desire to help, I think that being called on to discuss Parkinson’s all the time would grow old. But when you talk to someone else who is going through it, you don’t have that guilt that makes you feel like you’re taking advantage of a friend’s good nature.”
Group discussions have helped with everything from logistical to emotional support, and caregiver-specific support. Topics have included traveling with a person who has Parkinson’s disease and organizing a home to be Parkinson’s-friendly. Some chats have included guest speakers.
If nothing else, the calls have demonstrated that Parkinson’s caregivers are not alone in their plight. “I’m basically someone who is trying to make something better [out of] a not-so-great situation,” Dunetz said.
When asked if the meetings provided her with a greater sense of camaraderie, Dunetz responded, “A thousand percent.”
“We become friends and supporters in a way that I can’t imagine would happen if we weren’t all experiencing the same thing,” she added.
While the group isn’t a cure-all solution to everything related to Parkinson’s, it has made a significant difference to participating Parkinson’s caregivers.
Dunetz said the group is open to new participants. She can be reached by leaving a comment on her post in the forums or via email: [email protected].
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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