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Former Alberta premier Ralph Klein a recognizable face for unknown dementia

EDMONTON - Experts say Ralph Klein's struggle with a relatively unknown form of dementia called frontotemporal degeneration has brought some needed attention to the disease.

EDMONTON - Experts say Ralph Klein's struggle with a relatively unknown form of dementia called frontotemporal degeneration has brought some needed attention to the disease.

Family and friends of the former Alberta premier publicly revealed his diagnosis of FTD, also known as Picks disease, last year and spoke of how it was robbing the once-outspoken and quotable politician of his words.

Klein, 70, died in a Calgary care facility last week after battling the dementia, lung problems and pneumonia. A public memorial is to be held Friday in Calgary.

Dr. Ian Mackenzie, a professor of neuropathology at the University of British Columbia, says most people know about Alzheimer's, but few have heard of FTD, the second most common type of dementia.

Putting a face to FTD may raise its awareness, says Mackenzie, who adds there aren't many other public figures known to have the disease.

"It certainly takes an amount of bravery I think to come forward," Mackenzie says. "It's sort of easier for somebody to admit or announce that they or a loved one has cancer or they have heart disease."

He suggests there's a stigma attached to dementia. When the world learned that former U.S. president Ronald Reagan and former British prime minister Margaret Thatcher had Alzheimer's, people started questioning their judgment while in office.

"Your view of them changes. It has an effect on their legacy, how they're viewed in general."

FTD attacks the frontal or temporal lobes of the brain, eating away a person's language skills or personality. On average, it strikes when people are about 60 years old, a decade earlier than Alzheimer's.

In the years after Klein stepped down as premier, people started noticing changes in his speech and his public appearances became less frequent.

Roger Breault, CEO of the Speakers Bureau of Alberta, kept Klein on his blue-chip roster of speakers for private, paid engagements.

Klein was a hit with groups such as the Potato Growers of Alberta and the Chamber of Commerce in Humboldt, Sask.

But a few years ago, Breault got a call from Montreal, where Klein had delivered a speech for senior bank leaders. Organizers told him Klein had been a dud.

The speech had gone well, Breault says, although Klein read directly from a paper rather than shooting from the hip as he normally did. It was during the question-and-answer portion when things went wrong. By the time Klein started to answer a question, he'd already forgotten what it was.

Klein called Breault afterward.

"He told me point-blank on the telephone, 'I'm not accepting any more speaking engagements. None.'"

Beault agreed.

"It was a very decent thing for him to do. He could have taken advantage of his notoriety to accept many more speaking engagements. And he was well paid for those."

Klein's colourful political life garnered a lengthy obituary in the New York Times. A link to news stories about his death can also be found on the website of the Association for Frontotemporal Degeneration, based near Philadelphia.

Association spokeswoman Angie Maher says there is no celebrity poster person for FTD, like actor Michael J. Fox is for Parkinson's disease. That's mostly because it's so difficult for someone who has FTD to speak publicly.

In addition to losing language, she says, some people suffer drastic personality changes — they steal cars, eat from other people's plates in restaurants or have sexual dalliances with next-door neighbours.

Perhaps the most well-known American with FTD is Texas billionaire Richard Rainwater, says Maher.

In Canada, it was the wife of hockey legend Gordie Howe. Colleen Howe, diagnosed with Picks disease, died in 2009. Family have since said Gordie Howe is also showing signs of having some form of dementia.

Maher commends Klein's family for sharing his FTD diagnosis and not referring to it as Alzheimer's, which many do just because it's easier for people to understand.

"Every step gets us a little bit closer to raising more awareness, which eventually leads to more dollars being put towards research and possible treatments."

Mackenzie says there has been more progress in the research of FTD than Alzheimer's in the last decade. Some promising clinical trials are giving him hope that treatments or therapies will soon be developed.

An international conference on FTD is to take place in Vancouver next year.

Mackenzie says an estimated 5,000 people have FTD in Canada and there are 50,000 in the U.S.

The disease can be present for anywhere from a couple of years to a couple of decades. And although it's a devastating struggle, in the end, it's not a killer.

FTD patients often develop ALS, also known as Lou Gehrig's disease. Others lose interest in life — they become malnourished, catch pneumonia or other infections.

Rod Love, Klein's longtime friend and former chief of staff, says it was a cruel way for the former premier to go.

"That's true for anyone suffering from that kind of illness. It's not just Ralph Klein. It could be your grandfather. You hate to see them drift off into a place where for a year and a half they're just not with you.

"But it is what it is — just a reminder that every day is a gift."

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