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Who would have believed back in April, 1980, that something called a Marathon of Hope would change the world? That's when a gangly kid named Terry Fox, wearing a T-shirt and shorts, dipped his prosthetic foot into the raging waves crashing into a lonely beach in St. John's. We now know his mother did. Squirrelled away in Betty Fox's basement and now on display in the Canadian Museum of History in Gatineau are artifacts from that day including a jug of sea water from the Atlantic Ocean, some beaten-up running shoes and her son's training journal.

I thought of Betty Fox when I watched the often-heartbreaking documentary, Glen Campbell: I'll Be Me. The film tells the story of the crossover country singer's diagnosis with Alzheimer's disease and his "Goodbye Tour" to promote his last album, Ghost on the Canvas, and to bid farewell to fans of his hits that include Rhinestone Cowboy, Wichita Lineman and By the Time I Get to Phoenix.

The film, like Terry Fox's attempt to run across Canada 35 years ago, is much more than a legacy-building exercise. The Campbell doc rips the shroud off a devastating disease that destroys brain cells, cognitive abilities and personality – everything that makes us who we are. There were 747,000 Canadians living with the fatal and largely untreatable disease in 2011, the year that Campbell was diagnosed at 78. That number will rise exponentially with an aging population, with women more at risk than men because they live longer. And yet Alzheimer's research lags behind breast cancer and heart disease in public understanding and fundraising.

Like Terry Fox, Glen Campbell refused to hide his disease. And like Fox, he had a strong and committed family in his wife Kimberly Woollen, a former Rockette, and their grown children, Cal, Shannon and Ashley, who perform on stage with their father on his final tour. Campbell may be a headliner but the fact that he can't remember what day it is makes performing with him a scary prospect. Even scarier, his wife and Julian Raymond, his long-time friend and producer, want to film the potential disaster.

Absolutely not, was James Keach's first reaction when they asked him to direct the documentary. He changed his mind after meeting the Campbell family. Describing them as "exceptional human beings," he said they all knew the film was risky, but that paled next to the fact that Campbell "wanted to show the world the gnarly truth. He knew what faced him, but was intent on giving his music, his fans and himself one more chance to be heard."

What nobody realized was how much the fans wanted to give back to Campbell. They showed up in droves, singing along, holding their collective breath when he wandered away from the teleprompter, rewarding him with standing ovations – so much so that what began with only a few shows stretched out to 150 concerts, including a performance at the Grammy Awards in February, 2012.

The love was mutual. On stage, Campbell's head literally became itchy with pleasure – you can see him frenziedly scratching his scalp in response to the roar of the crowd. What nobody also knew was the resilience of Campbell's musical memory. When almost everything else was gone, he could still sing and play the guitar like the consummate musician he had been before Alzheimer's.

The disease is also devastating for families. You can see the strain on Campbell's wife as she tries to rouse him and get him prepped before performances near the end of the tour, and the anxiety in close-ups of his kids' faces as their father stumbles through lyrics and repeats songs he has already played. They want to help him out without humiliating him, but often they can only strum their instruments and hope the music will call him back.

Alzheimer's was always going to win in this story – Campbell has been in a long-term-care facility since last summer – but by recording the hard times as well as the triumphs, the film shares the grim reality of this horrific disease. And yet the overwhelming message is love – from his family, from his fans, from the crew and other musicians who come together at the end to help him record the Oscar-nominated song, I'm Not Gonna Miss You.

As he was dying of cancer, Terry Fox envisaged an annual run across the country to raise money for cancer research. After his death at 22, it was his mother who became the face of the campaign, which has increased global consciousness and earned more than $650-million for cancer research. I wouldn't be surprised if in the years to come Kim Woollen Campbell does the same for Glen Campbell and Alzheimer's research.

Follow me on Twitter: @semartin71

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