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Howe's dementia fight personal, public

Mark Howe, Gordie Howe
Mark (left) and Gordie Howe pose with the Stanley Cup at Mark's Hockey Hall of Fame induction...
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At 83, Mr. Hockey is still in demand and on the move. Gordie Howe is about to embark on another series of fundraisers to support dementia research.

It's a personal cause. The disease killed his wife, Colleen, in 2009 and is beginning to affect him.

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"He's a little bit worse than last year, but pretty close to about the same," son Marty said. "He just loses a little bit more, grasping for words.

"The worst part of this disease is there's nothing you can do about it."

While the long-term effects of concussions have been very much in the news lately, the family is hesitant to link the Hall of Famer's condition to chronic traumatic encephalopathy (CTE), the degenerative brain disease typically found in autopsies of people who have had multiple head injuries, including more than a dozen former NFL and NHL players.

Concussions weren't tracked when Howe played, so it is impossible to know how many he sustained. And he didn't start showing signs of dementia until his late 70s.

"I don't think anybody can really answer that question," Marty said of a connection to CTE. "He went for so long without any symptoms whatsoever. You don't have to be an athlete or in contact sports to get dementia."

Howe's dementia is currently mild and his family members haven't sought a diagnosis of exactly what kind he has. They did that with Colleen, who died at 76 of Pick's disease. The rare form of dementia is marked by changes in mood, behavior and personality, followed by memory loss similar to that experienced in Alzheimer's.

Another son, Murray, a radiologist, says his father's symptoms don't fit either Alzheimer's or Pick's.

"He has what we call mild cognitive impairment," Murray said. "His brain power is not what it used to be. In terms of the prognosis and diagnosis, it's still wide open."

Howe has short-term memory loss, difficulty speaking and some confusion in the evening when the sun goes down. The latter, called "sundowning," occurs in people with dementia, although the cause is unclear.

"He's always worse in the evening," Marty said. "It's like when the sun goes down, something flips the switch."

But Howe's personality hasn't changed and he continues to recognize his family and friends.

Howe's stamina and power were legendary during his 33 seasons of pro hockey. Physically, he's doing well for a man about to turn 84 in March. His sons say Howe likes to do household chores and go fishing, one of his favorite pastimes.

"He's still Mr. Hockey and that's what is so great because he's just such a pleasure to have around," Murray said. "He'll wake up first thing in the morning and there's a bunch of leaves outside and he'll rake for three hours. He's so pleasant and upbeat.

"When he first started showing signs of memory loss, we were concerned it was Alzheimer's and it was just going to go downhill."

It's possible Howe's dementia is vascular in nature. He suffered from heart disease later in his life and required the implantation of a coronary stent about a decade ago.

"He's had a couple episodes of getting faint or passing out around that time," Murray recalled. "It's possible he had a couple of mini-strokes that picked off some of the parts of his brain that you need to be able to retain short-term memory. That's my theory and what his family physician is thinking."

Howe had episodes of forgetfulness about six years ago while caring for his wife. The Howe children recognized the signs they'd previously seen in their mother.

The hockey great also was tired and not looking after himself, which made his condition worse. A program of regular physical activity has helped him combat his dementia.

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"He can easily walk four miles on very hilly terrain without a problem," Murray said. "When he first came to us, he couldn't walk 100 yards up a slight incline without having to stop because of chest pains. It was a complete turnaround for him."

After Colleen Howe's death, the Howes were approached by the Toronto health organization Baycrest to put Gordie Howe's face on a fundraising campaign for Alzheimer's.

Affiliated with the University of Toronto, Baycrest specializes in mental diseases of the elderly.

Howe, accompanied by Marty, makes public appearances at an annual series of Scotiabank Pro-Am hockey tournaments across Canada. More than $16 million has been raised by the Gordie and Colleen Howe Fund for Alzheimer's.

Howe is scheduled to attend a Canucks game in Vancouver on Thursday night to promote a Scotiabank Pro-Am in that city later this year.

Marty says his father plans to help kick off the same tournaments in Edmonton, Calgary and Toronto this spring.

He also will also attend a news conference Thursday afternoon in advance of a tribute in his honor at Friday's Vancouver Giants game.

Howe has his photo taken with fans and signs autographs under Marty's watchful eye at the events. A speech isn't an option anymore. Fatigue tends to exacerbate Howe's condition and Marty doesn't want his father feeling strained.

"If you see him now, obviously you can kind of tell he's not firing on all cylinders," Marty says. "Most people see Gordie and they're just happy Gordie is talking to them."

Marty was alarmed by a decline in his father's condition before an appearance in Calgary last year, but didn't want his condition made public until the family had a better handle on his condition.

"For people who are dealing with this, you have to have a sense of humor," he said. "Nobody wants to see their family members go through this. It gets harder. Towards the end, it's really no quality of life whatsoever. Pretty depressing, but you have to find the humor in some of it. Otherwise, it will kill you, too."

Marty and Murray are just grateful the dementia hasn't changed their father's personality or attitude so far.

"We're enjoying the times we have now," Marty said.

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