JOHN Quinn made sure to stop in Ballarat because he wanted to share his story in a bid to break the stigma about dementia.
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The Queenslander and partner Glenys Petrie want to promote and encourage this city’s ambitious bid 100 Stories project, collecting experience of 100 people living in dementia in Ballarat.
But they wanted a turn at letter-writing, as well.
StoryFest celebrated lives of people with dementia, and their loved ones, in photos, stories and letters at Ballarat Library on Saturday. Works collected will add to the 100 Stories project to help demystify the disease.
Mr Quinn is a former school principal and extremely articulate gentleman. He loves running.
He was diagnosed in 2010, aged 59, with early-onset dementia, but remains high-functioning. This made it slightly harder for experts to pick up his diagnosis.
Mr Quinn said that notwithstanding his lower days – and a lot depends on what he has done in the hours before, like poor eating – most people would not be able to tell he had dementia. The disease was most telling in how he processed language, at times not fully comprehending others.
“There are a lot of misconceptions about dementia. Many think once you’re diagnosed, your life is over, but for people with younger-onset, there’s often still a long time to live with the disease,” Mr Quinn said.
Mr Quinn said exercise helped him remember his NAMES, an acronym for the factors that alleviate his condition: nutrition; attitude; mental activity, music and meditation; exercise and enjoyment; and, social engagement, support, sleep and setting goals.
He loved the concept of people with dementia, and their loved ones, writing letters to each other and made a start on his own letter on a typewriter – but much preferred modern, less time-consuming technology of computer keyboards.
Mr Quinn and Ms Petrie love the steps made in Ballarat to become a dementia-friendly city and are exploring ways to adapt these for their own area, Wynnum Manly, in Brisbane.
The 100 Stories project is at the half-way mark.
Celebrate Ageing director Catherine Barrett, who is driving the project, said StoryFest was about documenting more stories, even if just to get others thinking about sharing their stories. Dr Barrett said health professionals say there are thousands of people living with dementia in Ballarat but only hundreds publicly acknowledge they have the disease, due to stigma associated with it.
StoryFest brought together elements, like photos and stories, from Celebrate Ageing’s Museum of Love, which was launched at the inaugural Valentine’s Day Symposium of Love and Dementia in Ballarat this year.
“The focus is really around voices, faces and stories and the other part is art...it resonates with people,” Dr Barrett said. “In the photos you can’t tell which person has dementia...Dementia can affect anybody, anywhere.”