When Steve McNeil steps on the ice at midnight, he is usually alone, often far from home, with exactly 19 hours and 26 minutes of skating stretching ahead of him.
In the last eight years, he’s done that 22 times, to raise awareness for Alzheimer’s Societies across Canada. He does it in memory of his mother, who battled dementia the last 20 years of her life. He does it to improve the lives of the many others like her, and to help their caregivers through a devastating time in their lives.
This year, with support from the Alzheimer’s Society, Dec. 15 has been designated National 1926 Skate Day for Alzheimer’s. His mother’s birthday was Dec. 15, and she was born in 1926, hence the date and duration of McNeil’s skate. She was diagnosed in her early 60s, when her family noticed her confusion, and lived with it for more than two decades, with McNeil as her primary caregiver, before she was eventually put into long-term care.
An Etobicoke resident, McNeil’s fundraising skates have mostly been in Toronto, at Nathan Phillips Square, but two years ago, he decided to travel across Canada, skating in all the large cities.
He finished his 11-city, 2020 tour in February, with plans to repeating his cross-country journey again this fall, but due to COVID, and difficulties travelling, that wasn’t to be.
With just one skate planned for this year, he is coming to Niagara-on-the-Lake to take advantage of the ice rink at the Wayne Gretzky Estates Winery and Distillery. He’ll stay in a hotel the night before, and head to the winery with his hockey bag over his shoulder, filled with two or sometimes three pairs of skates, several layers of clothing, and the music he listens to while he’s skating, prepared to step on the ice at 12:01 a.m. Dec. 15, and skate until 7:26 p.m.
McNeil, 59, is a mailman by day, and a recreational hockey referee in the evenings and on weekends, although the pandemic has restricted that too. But being on the move, and on the ice, is second nature for him. Both skating and walking are activities he loves, allowing him to clear his head and plan for the future, chiefly finding ways to increase awareness and raise money for Alzheimer’s.
While he skates, he listens exclusively to the “high-energy” music of AC/DC. It’s been his favourite band for years, since a friend of his dragged him off to Massey Hall in Toronto for a concert. And in recent years it’s become a tribute to Malcolm Young, the guitarist who left the band in 2014 to receive treatment for dementia, and who died in 2017.
McNeil says he feels blessed to be able to do something that comes so easily to him, and that can help him raise money for something so important to him.
The question he’s asked most often when he comes off the ice after his marathon skate is “how do you feel,” he says. “The answer is, ‘I feel great.’ If I could raise more money, I’d go back out and do it again, even though the weather is extreme, and sometimes I’ve been skating in a blizzard at -40 degrees.”
His favourite four hours are from 2 a.m. to 6 a.m., when it’s quiet, often without a soul around, and he gets lost in his music, coming up with ideas for the future — like a national skate day — and watches as the sun comes up, a new day begins, and in the big cities, people begin to move around.
He says he’s not naturally good at being the centre of attention, but over the years, he’s become more comfortable being in the limelight, and has been featured on both CTV and CBC news. His skates now regularly draw media, and he’s always willing to speak about what is most important to him: raising money to fight “this ugly disease.”
He calls it that, he says, because it’s so widespread, and so difficult not only for those who are diagnosed, but for their family members and caretakers, friends and even neighbours. Each case is completely different, but all are devastating, he adds.
“This year, with the focus during the pandemic on those in long-term care, the number of seniors who have become sick and died alone, and with families unable to say goodbye,” he says, he’s even more determined to improve their care and their quality of life, hopefully providing resources for more families to keep their loved ones at home. More and more families are going to need the assistance that their local Alzheimer Societies can provide, he adds.
“That’s why this fundraising skate is so important.”
His wife tried to care for her mother at home with them, giving up her career as her mother’s dementia worsened, and her health suffered, until, eventually, they decided to put her mother in long-term care as well. She was not only in the same home as his mother, but on the same floor.
“We thought that might make it easier,” he says, “but when you make a decision like that, even when you know it’s for the best, it’s still really tough.”
When McNeil takes to the ice at Gretzky’s, he will be wearing his usual layer of clothing, all the hockey pads he is accustomed to wearing, which make him comfortable and add some warmth, he’ll have his music and an oak stick he uses to help him glide, as a hockey stick would, his AC/DC pants and a new yellow hoodie — his mother’s favourite colour.
He has a custom hoodie made for each skate, and when he’s finished, has people sign it, and then takes it off, to be auctioned for the Alzheimer’s Society.
He encourages people to stop by during the day to chat, and he loves a Tim Hortons double double, he says, usually going through several during his skate.
Most rinks, he says, accommodate him with a close-by washroom facility, but without that, he has options that involve an empty coffee cup, he jokes — that’s the question he’s asked the second most often.
But what he really hopes for Dec. 15, is that across the country, people will “do the Canadian thing” and skate for 19 minutes and 26 seconds, and then donate $19.26 to their local Alzheimer’s Society.
If skating is not their thing, he suggests taking the 1926 challenge by doing something enjoyable, he says. “Bike, cycle, cook, walk your dog,” then tell your story and send a photo to social media listed on his website www.1926Skate.com, or #1926Challenge.