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Lives Unravelling

Whistler's concussion victims face a long road to recovery

Whistler's reputation as a place to push your limits reaches to the injuries sustained here too. Concussions appear to be more severe and take longer to recover from.

It has been termed the "quiet epidemic" with statistics suggesting that more than 37,000 people get concussions in Canada each year. In Whistler it is a brain injury faced by too many. In this two-part series Pique will explore how the injury has unravelled the lives of some and how they are working to regain their everyday existence. Next week Pique will examine the role of helmets in concussion prevention and what can be done to make recovery better.

Nothing about that Loonie Race six years ago could have prepared Pat Johnston for the fact that it was going to change his life.

It was a Thursday night, at the bottom of Whistler Mountain, and Johnston, along with hundreds of other local mountain bikers, was climbing up the mountain in order to race back down — a familiar summertime rite of passage for Whistler mountain bikers.

"I was just going too fast and (I was) all fired up about racing," he says of that night.

On the way down, on "Crank It Up," he took a header over his bars — broken fingers, a dislocated shoulder, and, most significantly, a brain injury.

Let's not mince words, says Johnston, that's the only way to describe a concussion.

He was taken to the Whistler Health Care Centre and then sent by ambulance to Lion's Gate Hospital where he got a CAT scan. It was clear — no swelling, no brain bleed.

Johnston says after a few hours of observation, he was sent on his way with a "good luck."

Little did he know then, it would take more than a year before he would feel like his old self.

He was textbook: symptoms like nausea, headache, sensitivity to light and sound. He spent the first month lying in a dark room — the year that followed was filled with ups and downs, expectation that he was getting better, frustration at the setbacks. Depression. Irritability. No energy. It was an excruciatingly slow road to recovery for the active father of three.

He never wants to go back there.

That 2007 night changed the way he rides his bike; the way he thinks about his life.

"I feel like I've used up my bullets," Johnston says. "I can't afford another concussion."

The vast majority of concussions — 80 to 90 per cent — are resolved in seven to ten days.

In Whistler, however, Johnston's story is an all too familiar one.

"There are so many people in this valley that have had concussions, more than three a week, and are very shy about voicing their concerns about their own mental health because of the stigma," he says frankly of the dozens of phone calls he gets from people looking to him for advice.

"I still have people looking at me sideways and this is years later."

Though concussion stats are hard to come by Whistler Medical Clinic's Dr. Karin Kausky sees "a lot" of concussions as a local sports medicine and family practice doctor. She believes that in Whistler the percentage of the difficult and persistently symptomatic concussion patient is likely higher, beyond the estimated 10 to 15 per cent of cases.

"There is a small percentage of people, although here we probably have more than average, that don't recover for a prolonged period of time," said Kausky.

"We probably see more severe concussions, or more prolonged concussions, just because the mechanism of injury is often bigger forces."

In other words, a place where people like to live large, eking the most out of life, mean the consequences are often greater when things go wrong.

A glimpse into darkness

For two years Kimberly Gannon has been living large portions of her day in a dark room, sleeping, meditating, fighting to regain her old life as a busy, working mother of three.

Diane Ziff has the physical all clear these days to get back to "normal,' but she's still practicing "finding Waldo" within the jumbled pictures of the popular children's book as brain exercise. It's hard, just as it's hard following a recipe, hard staying awake all day.

Andy Robinson can have an off-the-hook day riding in the bike park, but sometimes, just before he goes to sleep, the anxiety hits.

"I think about everything that could have gone wrong," he says. He knows all too well what happens when things go wrong on his bike.

Though Linda Glenday has fully recovered from her concussion, the memory of it lingers; a constant reminder of how quickly life can change in an instant.

"It's on my mind all the time," says Glenday simply of her six-month recovery that spanned from lying nauseous in a dark room for a month to sitting quietly outside for weeks on end, to slowly returning to a "normal" life — work, exercise, a social life.

"The thought of having to do that again is... devastating," she says grimly.

The story behind the stats

In the last calendar year 800 head injuries were tended to at the Whistler Health Care Centre in the emergency room. Typically the centre sees roughly 19,000 visits annually.

Not all 800 were for traumatic head injuries. Concussions, however, are all too frequent in a town of hard riding, hard skiing, hard activity.

Are there more today than 20 years ago?

That's a hard one to answer without the statistics to support the idea.

But, says Kausky, "I definitely think we recognize it and diagnose it a lot better than we used to.

"People are much more aware if it."

When the weather is right —clear skies, great visibility, hard snow conditions — the injuries are more frequent. It's not uncommon, when the day is right, to find patients lying side by side in the small Whistler emergency centre all being monitored for the same thing — concussion.

Dr. Bruce Mohr, president of the medical staff at the Whistler Health Care Centre, has seen his share as emergency doctor both on the mountain and at the clinic.

In a quiet room at the clinic in late February Mohr has just finished a three-day stint as an on-mountain doctor.

"This past week I've been seeing bad head injuries every day because the snow conditions are hard, the visibility has been pretty good," he says. "I think we've had an intubation here at the clinic every day for the past week."

That means putting someone on a ventilator to paralyze them and put their body at rest, so their brains can rest because they could be bleeding inside.

It's as bad as it gets when it comes to head injuries.

In the consensus statement from the 4th International Conference on Concussion in Sport held in Zurich in November 2012, doctors from around the world agreed: "Concussion is considered to be among the most complex injuries in sports medicine to diagnose, assess and manage."

Between the rock and the hard place

Picture the pinkish-gray brain, which is made up of a jelly-like substance, floating inside the skull in a soft cushion of spinal fluid. Delicate. Precious. Vital.

The hard skull is its protection. But when the force is too violent, the skull can fall short as a form of protection. Instead it becomes the foil as the brain bounces against the hard bone of the inner skull bruising the brain, or worse.

A concussion may be caused either by a direct blow to the head, face, neck or elsewhere on the body with an "impulsive" force transmitted to the head. You don't have to be knocked unconscious to get a concussion, even a severe concussion.

The force causes a disturbance in the function of the brain.

The thought is, says Kausky, that the injury causes a huge release — a toxic release — of neurotransmitters, or brain chemicals, which communicate information.

"It's a metabolic injury," she explains. "There's nothing structural about it... It's how your brain uses energy."

That toxic release causes a host of symptoms.

Johnston puts it in layman's terms; he thinks of it as a disruption in brain's energy pathways. And the recovery process is the rebuilding of those pathways.

"It takes time, energy, rest to rebuild them bit, by bit, by bit," he says.

It takes a lot of time, he adds.

"More time than you ever imagined."

The story... so far

There were times when Linda Glenday believed she would never get well after her concussion. She now has the luxury of being able to look back.

If she knew she would be back 100 per cent within six months of her concussion, it may perhaps have relieved some of the anxiety around her recovery.

As it was, there were long days of worry, of feeling literally like she was crawling out of her skin, wondering if she would ever be the same or if this was a new norm — sitting quietly on her shady deck watching squirrels and clouds, trying not to look at the clock. Talking on the phone would exacerbate her symptoms, light exercise too.

"There were moments when I would be beside myself with anxiety that I wouldn't get better," says Glenday frankly. "That's what I meant by 'crawling out of my skin.'"

In the summer of 2011, Glenday was mountain biking and fell on 99er. It was a wet day, a rather innocuous part of the trail, when she grabbed her brakes and went over the front.

She knew right away she had hit her head hard, in addition to the whiplash from banging it into the ground.

It happened in a split second.

"It's not like I'm a reckless person or I was doing anything particularly gnarly," she says.

She rode for another hour and a half though she was nervous and anxious and shaken up.

The rest of the weekend was spent a little dazed, a little confused. She tried to shake off the feeling with a road ride to the Callaghan.

She laughs in disbelief, knowing what she knows now. What if she had fallen again?

By Monday, unable to drive to work from Whistler to Squamish, she went to her doctor and was told she had a concussion, to go home and do nothing.

So, Glenday called in sick. She then went to the grocery store, did the shopping, went for a walk.

"That's when I learned the definition of nothing is nothing," she says grimly.

When the symptoms of headache and nausea persisted, she went back to the doctor and was again told to go home and do nothing — in no uncertain terms.

The next month was spent sleeping mostly in a dark room. Every morning brought with it the hope "would this be the day she would feel back to normal again, no headaches, no nausea?" Inevitably no.

And so began the gradual steps to recovery — for six months.

Glenday's injury happened two years ago. Perhaps if it happened today her treatment would differ slightly, that's how quickly the treatment of concussions is evolving.

Evolution in treatment

Where once doctors were calling for complete mental and physical rest beyond that acute phase, beyond one or two weeks, for people with prolonged concussions, now the current thinking is that some exercise may be good.

"What we do now is sub threshold symptom exercise," explains Kausky.

That's exercising at about 80 per cent of the level before the symptoms kick in.

"That newest consensus statement (from Zurich) is going to say 'we've probably been resting people too much,'" she explains.

"What they find is that people actually get better faster (with exercise)."

In Johnston's case, he found that if he pushed his heart rate above 120, he was set back; for three of four days he would feel the same as he did in the earlier stages of his concussion recovery.

For the past decade there has been a gathering knowledge around concussion injury and treatment, evolving knowledge that has sparked major changes in concussion management, particularly around sport and returning to play.

Athletes, whether at the recreational, elite or professional level, now follow a protocol before hitting the field, the ice, the slopes again.

The Sport Concussion Assessment Tool (SCAT) is now widely recognized as the standardized method of evaluating people after concussion in sport.

After that they follow a six-step progression before getting back into the game.

Mohr has seen on the ground how much things have changed in the medical field when it comes to diagnosing, treating and dealing with concussions.

Gone is the notion that you've "had your bell rung" or "had a knock to the head."

"Whereas we used to say 'well, it's just a mild concussion, you'll probably be OK in a few days or a week or two weeks,' all the evidence is now showing you can't even give a timeline," Mohr says. "So most of us say 'we can't tell you how bad or how long you're going to have concussive symptoms until you look back on this.

"You literally can't predict that from the severity of the head injury initially. So the recipe is rest — mental and physical rest. And good follow up. And wait and see. And basically, day by day."

Where's Waldo?

Living day-by-day is the path Diane Ziff is still following.

As she tells her story of three successive concussions, Ziff is quickly overwhelmed.

"It's emotional to talk about it," she says getting up from her chair and getting a tissue to wipe away the tears.

"You feel very isolated when you have a concussion because people don't understand what they are," she says. "So, I look very normal. But then, you don't feel normal."

She points to a table in the café, littered with plates, mugs, salt and pepper shakers.

"I can't pick out the one thing I'm looking for," she says, by way of explaining some of the lingering confusion.

That's why though she has the green light to return to activity, she's still working on vision and memory exercises like Where's Waldo?

"It's hard," she admits. "It's really hard to find Waldo in those pages."

Hard, particularly for a self-described Type-A personality, the kind of person who co-founded the Whistler Rowing Club and plans to compete in the World Masters Games next summer.

Multi-tasking is a thing of the past, for the time being at least; short-term memory can sometimes be... illusive.

She has since learned to adapt to the new limitations, to say "no" when she's overwhelmed, to rest when she's tired, to not overdo her exercise.

She has been working with physiotherapist Mike Conway, at Back in Action.

Like Kausky, he too has worked with the national teams, and seen the effect of concussions first hand. In addition to light exercise, concussion treatment can also include vestibular rehabilitation. The vestibular system controls the sense of movement and balance, which can be affected by concussion.

"It's like strengthening a muscle," explains Conway.

Ziff fell while skiing in January 2009, and then again in December 2010.

The third concussion happened just this past December, when she bent down in her garage to pick up a piece of paper and banged her head on a shelf.

While much is still unknown about concussions, there is general consensus of the additive effects. In other words, a second concussion can make symptoms persist longer and be more severe. Studies also show that the risk of getting a cerebral concussion is nearly six times greater for individuals with a history of concussion than for individuals with no such history.

"With each concussion, something happens to the brain we don't understand," says retired neurosurgeon Dr. Brian Hunt, a former volunteer patrol doctor on Whistler Mountain. "But we do know that the effects are cumulative. So, if you have excessive shaking and jarring of the brain and/or head, the brain will record that this has happened.

"The next time that they're struck it won't be nearly as hard as a blow, or a similar blow... but the symptoms will last longer, or they'll have more symptoms."

There is also some research that there may be a genetic factor in concussion. Hunt points to the NHL ice-hockey playing Lindros brothers as an example. Brett Lindros had three concussions in a year playing in the NHL before retiring. Eric had eight over several seasons before retiring.

Coincidence, wonders Hunt.

The link between genetics and concussion has not yet been proven, and there are other variables at play: the number of hits to the head, the age of the concussions, the severity, the frequency. But it could explain in part why the Lindros brothers have been particularly sensitive to the injury.

"I believe that there is a considerable genetic difference in individuals and their ability to withstand repetitive shaking and injury of the brain/head," says Hunt.

Some can tolerate the brain moving inside the head without particular problems. Others are very vulnerable.

Hunt was a volunteer doctor with Whistler Ski Patrol for 13 years, as well as a doctor on the national alpine ski team. He's seen his share of concussions.

He recalls standing on the edge of the terrain park and watching kids fall, lie on the snow, and slowly get up after 30 seconds. It may seem like they were just catching their breath; but he believes many were in fact feeling the effects of a concussion.

And they would pick their boards or their skis up, walk back up the hill, and do it all over again.

The invisible injury

The problem is — sometimes you just don't know when you've been hurt.

In 2011, Gannon, a level-three ski instructor, was training for her level four, pushing herself in the bumps. She was on longer, stiffer skis and she fell and hit her head.

She didn't think anything of it at the time.

A month and a half later she was again on the mountain going fast, caught a rut and she fell. Again she hit her head.

After one run she downloaded, which, she says, was bizarre but she just felt like she couldn't ski down.

"I don't actually remember anything else — getting home, that night, the next day," she says.

Four days later she couldn't walk, couldn't hold down food or water, couldn't understand what was going wrong.

She went to the health care centre and told doctors there she thought she had poisoned herself by taking old cough syrup.

Not poison. A concussion.

The busy mother of three used to spend her time shuttling the kids to hockey practices, volunteering with Girl Guides, teaching on the mountain, doing the books for her husband's business, taking part in school PAC meetings.

These days, however, she must brace herself to watch a hockey game, mentally prepare, hope that she can cope with the onslaught of physical and emotional complications that inevitably ensue, much as she hopes they don't.

The headaches, the tiredness, the confusion, the frustration, the utter disappointment that she's still not right can be overwhelming.

She manages a game every four to five weeks.

"It's kind of a blow every time it doesn't work, you know?" she says.

"When I put myself in a situation where there's lots of people, my body used to just shut down. Now, it stays a little bit longer. Once it starts shutting down I can still understand what people are saying a little bit longer. So... that's kind of the progression for me."

It's been two years since her concussion — two years of sleeping in a dark room for weeks on end, meditating, seeing some progression, suffering more setbacks. Two years of not being her old self.

Says Hunt: "A number of people that suffer concussions have symptoms which we can't measure and we can't see and they are frustrated because they're saying 'this is what I feel' and we're saying 'well we can't see anything...'

"And it's only now, as we improve knowledge, that people will become more sympathetic to people that suffer concussions and that they'll be more understanding; that the person has a problem, and yes, it's not a measurable problem, but they're very much aware that things are not right."

Things are still "not right" for personal trainer Andy Robinson and with six concussions under his belt, Robinson has learned to adapt to the changes in his brain.

His first concussion was at 18 years old, a secondary injury to the road rash that ripped the skin from his fingers to his right shoulder when he fell off his bike.

But over the years the repeated "knocks to the head" have taken their toll.

In the summer of 2010, he fell while biking and hit his head. Twice. He calls those concussions "big game changers for me."

"It changed my personality," says Robinson. "It changed what I could and couldn't do. I don't have the control I used to have. I get angry and I can't control the reactions sometimes. It has gotten better. I've now taken some steps. But it's not always easy for me."

He takes it in stride and with his customary sense of humour, thinking back on going to see the same movie twice and still not remembering it or asking his colleague if he wanted a cup of tea — five times in the span of ten minutes.

But after the bouts of confusion and disorientation subsided and the persistent headaches disappeared, depression set in.

He describes it as "horrendous."

With seemingly nothing to trigger it, Robinson was left at a loss to control it. Exercise would help, but sometimes he had to go to his room and sleep for days.

"I couldn't deal with reality," he says candidly.

Time for a helping hand?

This is one of the reasons why Johnston thinks it's important to have a support group in Whistler.

"The stigma really holds people back from getting more help which is too bad, it's really too bad," he says.

He has, by default, become a sounding board for many people going through the symptoms.

Ziff agrees: "I think a lot of people don't know where to go... They don't understand what's happening to them."

Johnston's advice to people, particularly young people, is revealing in its firmness, another indication of just how much his concussion affected him: "Stop what you're doing. Change your sport. That's a very hard message to convey and it's a hard one to accept."

It may be a bitter pill to swallow but in his mind, it's just not worth the risk.

"I love to ride," he says. "I road ride and I cross country ride but you will never find me downhill mountain biking and I'm very, very careful with the trails I choose. Now I ride for fitness rather than the thrill and the exhilaration.

"There are too many other good things to do. I don't want to ever go through a concussion recovery again. They're too painful."

 

Concussions in kids

In Atom C hockey, Whistler Winterhawks player Anthony Reimer is known as “The Wall.”

People bounce off him, says his mom Christina Reimer, not the other way around.

“When he falls, he falls hard,” she says. “When he plays, he plays hard.”

Usually Anthony takes it all in stride.

But at the end of February, while at a hockey skills class with the Whistler Skating Club, Anthony was skating backwards and lost his footing. He fell on the back of his head, and likely blacked out for a few seconds.

At nine years old, Anthony had his first concussion.

In young brains that are still developing, concussions are a serious business.

The standard doctors orders followed for Anthony: no TV, no video games, no reading, no eye stimulation, rest, darkness, quiet. Not an easy prescription for a nine-year-old.

“I ended up laying in bed with him for the first two or three days,” says Christina. “We didn’t leave him at all.”

When Anthony was still throwing up after two days, his doctor grew concerned. He was monitored for eight hours at the Whistler Health Care Centre, while his doctor remained in contact with BC Children’s Hospital in Vancouver. Ultimately, they were weighing the risk of exposing Anthony to radiation from a CT scan – a scan that could reveal more damage in his brain, beyond concussion.

As he gradually began to feel better, the CT scan was ruled out and he was released.

“I’ve dealt with a lot of stuff,” says Christina, a mom of three who has had her share of emergency-room visits.

“Concussions are the one thing I’ve never had experience with. It was scary because it was out of my control.

“When this happened I didn’t know what to do.”

Concussions in kids are treated differently than in adults.

The 2012 Zurich consensus statement says: “Because of the different physiological response and longer recovery after concussion and specific risks… related to head impact during childhood and adolescence, a more conservative RTP (Return to Play) approach is recommended.”

A Child SCAT3, the standardized tool to assess concussion, has been developed for the five- to 12-year-old age bracket. It includes a symptom evaluation as well as a cognitive and physical evaluation with questions like: what month is it? What year is it?

No child diagnosed with concussion should be returned to sports participation on the day of the injury.

“It was agreed by the panel that no return to sport or activity should occur before the child/adolescent athlete has managed to return to school successful,” says the consensus statement.

“In addition, the concept of ‘cognitive rest’ was highlighted with special reference to a child’s need to limit exertion with activities of daily living that may exacerbate symptoms.”

After a week of rest, Anthony began to feel better. He started back to school, slowly at first, and then slowly back to exercise.

He missed his last hockey games of the season.

“It happens,” sighs Christina. "You learn. You take it in stride”.