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The Malettes lace up — hockey skates, naturally — and glide effortlessly, arm in arm, at twilight.
There’s no sign of just how rough the ice has been for the Orléan’s family since Vince Malette, a former Ottawa 67’s assistant coach, got the shocking diagnosis of Alzheimer’s disease in 2014.
The 56-year-old may struggle to find the words, but his message, mixing determination and hope, is clear.
“For me, I do the things I can do,” he said, pointing to getting out on the ice as an example. “I just love my family and I hope the cure will come someday.
“I’m doing what I have to do. I want others to come forward for the cure.”
Malette’s family say that he’s turned his characteristic grit and good humour toward staying active – battling stereotypes that a dementia diagnosis signals an end to living – as they pray that researchers find new answers.
He was with Eisbären Berlin of German’s top-tier pro hockey league when daughter Alyssa, who had joined him in Europe, started seeing him struggle with everyday tasks.
The Malettes enjoy a skate on the Rideau Canal Skateway.
Back home for the summer, Joana, his wife of 33 years, noticed uncharacteristic behaviour, too, like failing to show up for planned meetings. She wondered if her husband was just tired and rundown, but he insisted nothing was wrong.
“Finally, I kind of gave him an ultimatum: You’re going to deal with this or you’ll have to deal with me,” Joana said wryly.
Doctors performed a series of cognitive tests and MRIs to rule out other causes, and concluded it was likely Alzheimer’s disease, which inexorably destroys brain cells, and with them thinking ability and memory.
“This is impossible — you just can’t believe it,” Joana recalls thinking. “He’s so young.”
Well over half a million Canadians, including people in their 50s, 40s and even 30s, are living with dementia, including Alzheimer’s disease, its most common form. That number is expected to rise to 937,000 in less than 15 years.
The Alzheimer Society of Canada is working to fight the idea that dementia is just an “old person’s disease” in a new education campaign.
Joana and Vince lace up for a skate on the Rideau Canal Skateway.
“We need to help people not jump to the end of the disease progression but think about the many, many years where people live with the disease, just like people live with all kinds of diseases for many years,” director of education Mary Schulz said.
While she encourages caregivers to seek expert advice and support early — it makes it more likely they’ll be able to care for loved ones at home for longer — she said we should all challenge the stereotype that people diagnosed with dementia are instantly incapable.
“What people with dementia tell us all the time is that it’s of course very difficult to get this diagnosis, nobody wants it, but what they find is even harder than the diagnosis itself is the stigma that they bump up against, the attitudes that even friends and family have,” Schulz said. “That can be even more debilitating than the disease itself.”
The newly diagnosed report of being left out of social events and dropped from golf games or book clubs because it’s assumed they won’t be able to take part.
“These things don’t happen overnight,” Schulz said. “The worst thing that we can do is make somebody more incapacitated than they already are before they need to be. It leads to isolation and depression, and lack of meaning, hopelessness.
“We wouldn’t do that with someone with cancer. Why would we do that with someone with dementia?”
There’s also mounting evidence showing that being physically and mentally active, and staying socially connected, along with eating a Mediterranean-style diet, avoiding smoking and managing stress, can help reduce the risk of dementia and potentially slow its progress.
Vince Malette is seen behind the Ottawa 67’s bench with coach Brian Kilrea in 2004.
Living well with dementia is clearly the Malettes’ game plan, but they’re candid that first there was shock and grief.
“I was heartbroken,” Alyssa said of learning about her dad’s diagnosis. “When he first found out, it was extremely difficult. Now we’ve kind of accepted it. We can’t ignore it and we have to come to terms with it – there’ s no stopping the disease. As much as you want to deny it and run away from it, you can’t.”
While there are drugs available to ease symptoms in some people, none can currently stop or reverse the progress of dementia, which can be present in the brain for up to 25 years before symptoms appear, and researchers still don’t fully understand what causes it.
The Alzheimer society has funded more than $53 million in research aimed at both finding new treatments for the many forms of dementia and improving the daily lives of people who have it. Families like the Malettes also look with hope at billionaire Bill Gates’ $50 million U.S. donation to the Dementia Discovery Fund.
Despite the declines in his thinking and memory, Alyssa Malette says that her dad is still the same person: funny, game to do things together and his family’s biggest cheerleader.
“He’s definitely been my hero,” she said. “Growing up, he was always there, he was always supporting me and my sister through every aspect of our lives. Just one of the most positive, caring people I know. Through every gymnastics competition, through the hard times as an athlete, he was there, putting us back on our feet and motivating us.
“We’re not going to give up on him. We’re going to keep fighting with him, stay as positive as we can and remember to laugh at the funny moments together. We really value our family time now more than ever. ”
Alzheimer’s ended the coaching career Malette loved. In Germany, he’d helped win three league championships, capping off a career that included nine years (and one Memorial Cup win) as an assistant coach of the 67’s and time as head coach of the Peterborough Petes.
The Malettes put on their blades before skating the canal. ‘We’re going to keep fighting with him,’ says daughter Alyssa.
He had a reputation in the hockey world as an affable, all-round good guy and a coach who brought out the best in the young players who even after decades recognize him on the street and come over to thank him.
Now Malette struggles to hold a conversation. He can’t cook or drive, tell time or remember dates.
But he and his family focus on what he can do: work out with his wife, golf, with his son-in-law keeping score, and cheer on Alyssa, a Redblacks cheerleader, from the sidelines or on TV. He kept daughter Amanda company while she was on maternity leave and dotes on the year-old grandson he hopes to teach to skate.
Malette pushes himself to be his best, Joana said. When the disease made it hard for him to keep up with the moves in an exercise class, for example, he poked fun at himself and joked that he wouldn’t mind trying it again.
“He doesn’t give up, which I love about him,” she said.
Even as they make plans for what Alzheimer’s relentless progress will bring, another thing hasn’t changed, Joana said.
“He doesn’t go a day without telling me he loves me,” she said of her sweetheart since Rideau High School. “I always follow up with, ‘I love you more.’
“We want to be as positive as we can and have fun, enjoy our life. Every day now is very valuable to us.”
查看原文...
There’s no sign of just how rough the ice has been for the Orléan’s family since Vince Malette, a former Ottawa 67’s assistant coach, got the shocking diagnosis of Alzheimer’s disease in 2014.
The 56-year-old may struggle to find the words, but his message, mixing determination and hope, is clear.
“For me, I do the things I can do,” he said, pointing to getting out on the ice as an example. “I just love my family and I hope the cure will come someday.
“I’m doing what I have to do. I want others to come forward for the cure.”
Malette’s family say that he’s turned his characteristic grit and good humour toward staying active – battling stereotypes that a dementia diagnosis signals an end to living – as they pray that researchers find new answers.
He was with Eisbären Berlin of German’s top-tier pro hockey league when daughter Alyssa, who had joined him in Europe, started seeing him struggle with everyday tasks.
The Malettes enjoy a skate on the Rideau Canal Skateway.
Back home for the summer, Joana, his wife of 33 years, noticed uncharacteristic behaviour, too, like failing to show up for planned meetings. She wondered if her husband was just tired and rundown, but he insisted nothing was wrong.
“Finally, I kind of gave him an ultimatum: You’re going to deal with this or you’ll have to deal with me,” Joana said wryly.
Doctors performed a series of cognitive tests and MRIs to rule out other causes, and concluded it was likely Alzheimer’s disease, which inexorably destroys brain cells, and with them thinking ability and memory.
“This is impossible — you just can’t believe it,” Joana recalls thinking. “He’s so young.”
Well over half a million Canadians, including people in their 50s, 40s and even 30s, are living with dementia, including Alzheimer’s disease, its most common form. That number is expected to rise to 937,000 in less than 15 years.
The Alzheimer Society of Canada is working to fight the idea that dementia is just an “old person’s disease” in a new education campaign.
Joana and Vince lace up for a skate on the Rideau Canal Skateway.
“We need to help people not jump to the end of the disease progression but think about the many, many years where people live with the disease, just like people live with all kinds of diseases for many years,” director of education Mary Schulz said.
While she encourages caregivers to seek expert advice and support early — it makes it more likely they’ll be able to care for loved ones at home for longer — she said we should all challenge the stereotype that people diagnosed with dementia are instantly incapable.
“What people with dementia tell us all the time is that it’s of course very difficult to get this diagnosis, nobody wants it, but what they find is even harder than the diagnosis itself is the stigma that they bump up against, the attitudes that even friends and family have,” Schulz said. “That can be even more debilitating than the disease itself.”
The newly diagnosed report of being left out of social events and dropped from golf games or book clubs because it’s assumed they won’t be able to take part.
“These things don’t happen overnight,” Schulz said. “The worst thing that we can do is make somebody more incapacitated than they already are before they need to be. It leads to isolation and depression, and lack of meaning, hopelessness.
“We wouldn’t do that with someone with cancer. Why would we do that with someone with dementia?”
There’s also mounting evidence showing that being physically and mentally active, and staying socially connected, along with eating a Mediterranean-style diet, avoiding smoking and managing stress, can help reduce the risk of dementia and potentially slow its progress.
Vince Malette is seen behind the Ottawa 67’s bench with coach Brian Kilrea in 2004.
Living well with dementia is clearly the Malettes’ game plan, but they’re candid that first there was shock and grief.
“I was heartbroken,” Alyssa said of learning about her dad’s diagnosis. “When he first found out, it was extremely difficult. Now we’ve kind of accepted it. We can’t ignore it and we have to come to terms with it – there’ s no stopping the disease. As much as you want to deny it and run away from it, you can’t.”
While there are drugs available to ease symptoms in some people, none can currently stop or reverse the progress of dementia, which can be present in the brain for up to 25 years before symptoms appear, and researchers still don’t fully understand what causes it.
The Alzheimer society has funded more than $53 million in research aimed at both finding new treatments for the many forms of dementia and improving the daily lives of people who have it. Families like the Malettes also look with hope at billionaire Bill Gates’ $50 million U.S. donation to the Dementia Discovery Fund.
Despite the declines in his thinking and memory, Alyssa Malette says that her dad is still the same person: funny, game to do things together and his family’s biggest cheerleader.
“He’s definitely been my hero,” she said. “Growing up, he was always there, he was always supporting me and my sister through every aspect of our lives. Just one of the most positive, caring people I know. Through every gymnastics competition, through the hard times as an athlete, he was there, putting us back on our feet and motivating us.
“We’re not going to give up on him. We’re going to keep fighting with him, stay as positive as we can and remember to laugh at the funny moments together. We really value our family time now more than ever. ”
Alzheimer’s ended the coaching career Malette loved. In Germany, he’d helped win three league championships, capping off a career that included nine years (and one Memorial Cup win) as an assistant coach of the 67’s and time as head coach of the Peterborough Petes.
The Malettes put on their blades before skating the canal. ‘We’re going to keep fighting with him,’ says daughter Alyssa.
He had a reputation in the hockey world as an affable, all-round good guy and a coach who brought out the best in the young players who even after decades recognize him on the street and come over to thank him.
Now Malette struggles to hold a conversation. He can’t cook or drive, tell time or remember dates.
But he and his family focus on what he can do: work out with his wife, golf, with his son-in-law keeping score, and cheer on Alyssa, a Redblacks cheerleader, from the sidelines or on TV. He kept daughter Amanda company while she was on maternity leave and dotes on the year-old grandson he hopes to teach to skate.
Malette pushes himself to be his best, Joana said. When the disease made it hard for him to keep up with the moves in an exercise class, for example, he poked fun at himself and joked that he wouldn’t mind trying it again.
“He doesn’t give up, which I love about him,” she said.
Even as they make plans for what Alzheimer’s relentless progress will bring, another thing hasn’t changed, Joana said.
“He doesn’t go a day without telling me he loves me,” she said of her sweetheart since Rideau High School. “I always follow up with, ‘I love you more.’
“We want to be as positive as we can and have fun, enjoy our life. Every day now is very valuable to us.”
查看原文...
