Baycrest

Indomitable Spirit of the West "You'll have to excuse me, I'm not at my best I've been gone for a month, I've been drunk since I left.These so- called vacations will soon be my death. I'm so sick from the drink, I need home for a rest." That's the opening verse to iconic Canadian folk song "Home for a Rest." Co-written and sung by John Mann, front man for the Vancouver-based band Spirit of the West, the song remains a staple on playlists at dorms, bars and clubs across the country – a rallying cry to good times, good friends and joie de vivre. The song, written in 1989 when Mann was 26, represented Mann's signature, frenetic onstage performances, his care-free attitude and unlimited artistic potential. But that was then. In 2014, Mann was diagnosed with early onset Alzheimer's disease (or young onset dementia) at age 51. In the years since, he has crammed as much activity, advocacy about brain health and living as he could in an effort to keep the disease at bay and set an example for anyone living with Alzheimer's to never give up. Still, the disease continues to take its toll. Young onset dementia accounts for an estimated 2-8% of all dementia cases. While rare, 16,000 Canadians under the age of 65 are living with young onset dementia. 1 When Mann and his partner of 30 years, actress and writer Jill Daum, were approached earlier this year by the Baycrest Foundation to participate in the TELUS Health Brain Project, an art-fundraiser in support of brain health, they quickly agreed to participate. Speaking to BrainMatters in June, Daum – who now mostly speaks for Mann in interviews because of his condition – said The Brain Project can do a lot for ending the stigma of Alzheimer's. "I said yes to The Brain Project because it's very important for me to bring early onset Alzheimer's outside of the shadows of shame," she said. "The sicker John gets, the more I feel impassioned about this. To be quite honest, the more ill he gets, the more uncomfortable it makes us all… because we don't know what to do and we're faced with one of our biggest fears when we hang out with him. I think the more we're exposed to it, the more conversations we have about it with caregivers, the better we'll get at dealing with the disease." Sadly, the disease is starting to overtake Mann, despite his indomitable spirit and the support of his friends and family, Daum says. "It's pretty wild to think that Spirit of the West had their final performance at the Commodore Ballroom in Vancouver last year [on April 16, 2016]. Now, John is no longer singing at all. He can't formulate the words. He only snaps his fingers to the music. About 30 per cent of the time, he doesn't recognize the people around and with him – including me. So it's been a pretty swift turn. It's harder to engage with him now," she adds, her voice breaking with emotion. "Those first times when he didn't know who I was… they're really painful. The first time his children were with him and he didn't know who they were, it really hurt them." Despite the inexorable loss of his identity and the difficulty in witnessing it, Daum perseveres, saying she hopes events like the TELUS Health Brain Project will 6 BrainMatters FALL/WINTER 2017 Jill Daum and John Mann "It's very important for me to bring early onset Alzheimer's outside of the shadows of shame." "Loss of Found" by Kevin Dubois.

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