Gordie Howe's dementia fight personal and public

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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 for research into dementia.

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

"He's a little bit worse than last year, but pretty close to about the same," son Marty says. "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."

The Howe family hasn't chased a diagnosis of exactly what kind of dementia Gordie has. They did that with Colleen, who died at 76 of Pick's disease. Pick's is a rare form of dementia marked by changes in mood, behaviour and personality, followed by memory loss similar to that experienced in Alzheimer's.

Gordie's dementia is currently mild and it's unclear how it will progress. One of his other sons Murray, a doctor who specializes in radiology, says his father's symptoms don't fit either Alzheimer's or Pick's.

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

"He doesn't fall into what I would say is any particular category. He really doesn't seem to fall into the Alzheimer's dementia category because his disease is pretty stable."

In an earlier interview with The Canadian Press, Marty said: "Gordie's isn't the Pick's disease like my mom had. It's some form of dementia."

But at an event Thursday, after The Canadian Press story appeared, he pulled back from the word dementia.

"I probably used the word dementia, like, four or five times and probably shouldn't have," Marty told reporters.

"Unfortunately, it's a little misleading, it got out there and it's not near as bad as everybody's trying to make it," he added.

Murray, however, called the story "very well-written." He also used the word dementia in conversations with The Canadian Press.

Marty appeared taken aback at the volume of reaction to the story, calling it "too much" and saying he had to recharge his phone after a three-hour car ride. He also feared news of Gordie's condition had amplified as the story spread.

He said the family had wanted to "get some of the information (on Gordie's condition) out to people because we've been keeping it quiet for quite a while.

"As time goes on, things get more evident. So we just figured it was time."

Said Marty: "He suffers, basically, loss of words. I called Murray to finally get the right and proper terms. Cognitive impairment is his condition, which is caused from many different things, including the head injuries. It mostly comes on when he gets tired."

Gordie did not speak to reporters at a Vancouver Giants event Thursday but socialized with club owners, players and guests and posed for team pictures. The WHL club is honouring him at a game Friday night.

Short-term memory loss, difficulty speaking and some confusion in the evening when the sun goes down are Gordie's symptoms. The latter, called "sundowning," occurs in people with dementia although the cause is under debate.

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

But Gordie's personality hasn't changed and he continues to know who his family and friends are.

While his most noticeable deficit is his short-term memory, Murray says his father can still learn and retain some new information.

Gordie'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 Gordie likes to do household chores and go fishing, which is one of his favourite pastimes.

"He's still Mr. Hockey and that's what is so great because he's just such a pleasure to have around," Murray says. "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."

Murray says it's possible Gordie's dementia is vascular in nature. Gordie 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 recalls. "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."

Gordie takes Alzheimer's medicines Aricept and Namenda "just on the off-chance it would help," Murray says.

"I feel very comfortable with his care," he adds. "We don't want to do anything super-aggressive. We mostly just want to keep him comfortable and feeling like he's needed and wanted and has a role or a place.

"I lean towards being conservative and trying to maintain his dignity and his comfort."

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

Gordie was also tired and not looking after himself while caring for his wife, which made his condition worse. A program of regular physical activity has helped Gordie combat his dementia, says Murray.

"He can easily walk four miles on very hilly terrain without a problem," he explains. "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."

While the long-term effects of concussions have been very much in the news lately, linking Gordie's condition to chronic traumatic encephalopathy (CTE) may be a stretch.

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

"I don't think anybody can really answer that question," Marty said in an earlier interview on the possibility 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."

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

Affiliated with the University of Toronto, Baycrest specializes in mental diseases of the elderly. Baycrest is holding a conference on mild cognitive impairment March 26-28 in Toronto.

Half a million Canadians have Alzheimer's disease or a related dementia, according to the Alzheimer Society of Canada's website.

Gordie, accompanied by his son 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.

Marty says the plan is for Gordie to help kick off the tournaments in Edmonton, Calgary and Toronto this spring.

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

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

The reason Gordie keeps shaking hands and posing for photos is because he likes it and is stimulated by it, Marty says.

"He brings up the energy from someplace inside him to do better than he normally does," Marty observes. "He really enjoys people. When he gets in public, it brings on his persona and kind of puffs his chest out a little bit."

Marty says people are so thrilled to meet the Hockey Hall of Famer that they don't care if Gordie says much to them.

"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."

Gordie divides his time between the homes of his four children. He spends a lot of time in Connecticut with Marty or with Murray in Sylvania, Ohio. Gordie attended the Hockey Hall of Fame induction of his son Mark, the head scout for the Detroit Red Wings, last year in Toronto.

Now that daughter Cathy has recently moved to Lubbock, Texas, both Marty and Murray say their dad may spend part of the winters there to escape the cold.

When Gordie is at Murray's home in Ohio, he doesn't struggle with speech because he's rested, comfortable and with family.

On the road with Marty, he's in unfamiliar environments meeting people he doesn't know and has a hard time making conversation.

"A lot of times he tries to dodge that by talking in generalities," Murray said. "He'll bring up some old stories he's familiar with and hope they apply to who he's talking to.

"When he's in a more comfortable, familiar environment like at our house and you come talk to him, he'll be much, much more cognitively intact."

Marty was alarmed by a decline in Gordie's condition prior to an appearance last year in Calgary. Gordie seemed to enjoy himself there, donning a white cowboy hat presented to him by Calgary Mayor Naheed Nenshi.

Seated among ex-NHL players for a photo op, Howe jokingly gestured with his elbow famous for punishing opposing players at former Red Wings tough guy Dennis Polonich.

But he couldn't answer questions put to him in a video interview with The Canadian Press. His sentences were disjointed and Marty halted the interview.

"We were trying to do that interview and I thought he could do it," Marty says now. "This disease is like that. It goes in spurts. What worries you is when it speeds up. He had that just before you would have seen him last year. He had a fast downhill spiral there for about three months.

"It's a lot. You get confused, you're not sure which room you're staying in, who is in the house, where is the bathroom? You lose any kind of short-term memory. It just goes right out the window. And then he settled down, which we were all happy for."

At the time, Marty didn't want Gordie's condition made public until the family had a better handle on what they were dealing with. But given Gordie's age and the fact he's still engaged and interested in life, Murray questions how much would be gained by further testing.

"I don't feel I need to make a more definitive diagnosis," Murray says. "We could put him through an all-day neurocognitive test like we did with our mom.

"It would be very frustrating for my dad, number one because he has dyslexia and I think it would be embarrassing for him. There are things he would struggle with, just because of the challenges he's always had with reading. And number two, it would bring out his memory issues and that's very frustrating for him.

"I saw with my mom ... we spent a lot of time making the diagnosis of Pick's disease, but really, frankly, there wasn't squat we could do about it. We tried every medicine that was out there and really got no response with any of it. She just went into a slow dive."

While the Howe family has the misfortune of both parents struck by dementia, Marty says their experience with Colleen helps them in their decisions about Gordie's care.

"For people who are dealing with this, you have to have a sense of humour," he says. "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 humour in some of it. Otherwise, it will kill you too."

Marty and Murray are grateful dementia hasn't encroached on Gordie's personality or attitude so far. They keep their fingers crossed that their father will continue to be happy.

"I think he's doing great," Marty says. "I'm sure we'll keep him fishing as long as we can, which he really enjoys.

"I wish he didn't have whatever he has. I know he would be with us longer. We're enjoying the times we have now."

A hockey icon, Gordie played 33 professional seasons from 1945 to 1997.

"Over those five decades, Howe didn't just survive, he was dominant — on the scoring lists, in battles in the corners, on game-winning goals and when the year-end awards were handed out," reads his Hockey Hall of Fame biography.

"He was a big man, though by modern standards no behemoth, but what set him apart was his incredible strength."