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Life with - but not defined by - dementia

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​​Image of David McFadden
David McFadden (L) with his partner, Merlin Homer, in Cobourg, ON during the launch of his book "Shouting Your Name Down the Well." (Photo: Laurie Siblock)

"I am still absolutely myself inside. I haven't changed."

Almost three years after having been diagnosed with logopenic variant primary progressive aphasia, Canadian poet David McFadden hasn't let this form of Alzheimer's disease define him.

Like the well-known writer he is, McFadden has simply embraced the theme of this new chapter in his life. In the fall of 2015, he published "Abnormal Brain Sonnets", a collection of sonnets that not only examine his past and the influences that have shaped his life, but also explore his current struggles with memory and language as a result of the onset of dementia.

A poet battles word memory loss

Logopenic variant primary progressive aphasia is a type of Alzheimer's disease that affects a person's memory of words.

McFadden was formally diagnosed with the condition in 2012 but didn't share this publicly until the following year, shortly after winning the Griffin Poetry Prize – the world's most prestigious poetry award.

Stuart Ross, McFadden's friend and editor at Mansfield Press, remembers not fully grasping the implications of McFadden's diagnosis at first. But as he learned more, he realized the impact this type of dementia could have on McFadden's lifelong passion.

"I thought it was really lousy luck. But Dave has handled it with such good humour and a Zen acceptance, that he's made it easier for those of us who know him," says Ross.

"We didn't know what to expect, but I became even more determined to help him see through all his literary projects and offer whatever support I could to him and his partner, Merlin."

Alzheimer's Awareness Month

January is Alzheimer's Awareness Month. According to The Alzheimer Society of Canada, 47 per cent of Canadians believe it's not possible to live well with Alzheimer's disease and other dementias.

This belief is the basis for their campaign, #StillHere, which encourages Canadians to learn more about dementia and turn that information into action that will help those with dementia live full lives.

"A dementia diagnosis does not mean a person should stop everything and retreat into a corner to watch television," says Dr. Carmela Tartaglia, McFadden's neurologist at the Krembil Neuroscience Centre's Memory Clinic. McFadden co-dedicated his book to Dr. Tartaglia, his naturopath Allison Freedman, and his personal support worker and trainer David Kim-MacKinnon.

"Staying cognitively, socially and physically active and continuing to do the things you love is necessary to slow the progression of dementia. We all have a responsibility to better understand how we can help our loved ones live well with any of the diseases that cause dementia," adds Dr. Tartaglia.

For McFadden, this means to keep writing.

Ross has noticed how the onset of McFadden's condition has changed his writing, but he notes that McFadden's latest work stands out and is as significant as any of his other books.

"It is clear in these sonnets that Dave was learning to write in a slightly different way: the sentences are shorter than in his previous work, often lasting for only a line two," says Ross. "But they're still packed with ideas and surprises and the themes of remembering and forgetting also pop up through the collection."

Still here

Although McFadden says he doesn't think of his books as having special meaning or significance, the reception of his latest work has shown many that he is very much "still here" and willing and able to continue his craft and collaborate on other projects.

It's this visibility – a sense of still being able to do meaningful things – that allows McFadden to feel like a very active participant in his life. 

"I recently met with two filmmakers who want to make a film about me," he says.

"During their visit, all of us: the filmmakers, Merlin (my partner) and I, were talking. I felt alive and engaged and normal. There is something about people still finding me important and worthwhile."​

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