After slamming her head against the frame of her car and sustaining a concussion in March 2015, Natasha Perrault left the hospital with a piece of paper outlining danger signs to watch for that would require a return to the emergency department: seizures, worsening headache, and repeated vomiting among them. She also assumed it wouldn't be long before she'd be back to normal. "I was hoping it was only going to be two weeks, but it got worse and worse," Perrault says. "I was a mess. I couldn't understand what was wrong with me. I've broken my back and that's nothing compared to having a concussion. When you blow out your knee, you do your exercises and you get better. But everything you do requires your brain, and when you have a brain injury, you're so run down; everything you do is exhausting."
Forget paddle boarding, mountain biking, and snowboarding, all the activities the Squamish resident loved; Perrault had to use poles to keep herself upright while walking and was isolated for months because simply talking to other people triggered too much pain in her head.
Her recovery has involved audiology, physiotherapy, vestibular therapy, occupational therapy, speech language therapy, and neuropsychology. She has seen a neuro-optometrist and a kinesiologist.
It's been over two years since Perrault hit her head, and she's only now just beginning a gradual return to work. "It's like having to start life all over again," she says.
With fierce debate over whether the NHL takes concussions seriously enough (and with stars such as Sidney Crosby having experienced several of them) and with recent films such as Head Games (a documentary) and Concussion (a drama) bringing the topic to the masses, the medical condition has never been more prominent. And while it's not without controversy, new thinking is turning concussion management on its head.
Health experts agree that absolute rest is required in the immediate aftermath of a concussion. Just how long people should rest for varies, depending on their symptoms, and is subject to some debate. According to Complete Concussion Management (CCMI), which promotes education and an interdisciplinary approach to treatment, 85 to 90 per cent of all concussion symptoms resolve within a week or two. When symptoms last well beyond that, people are said to be experiencing post-concussion syndrome.
Historically, people were told to rest and, if that didn't work, to rest some more. However, research suggests that prolonged rest may actually make things worse.
"Rest dominating the plan of care is fundamentally wrong," says physiotherapist Mike Conway, of Whistler's Back in Action Sports Physiotherapy & Massage. "We still say the cornerstone of concussion management is early rest, but we define it further; we call it relative rest. Removal from normalcy and removal from all social environments, from technology, is quite challenging psychologically, and there's a fine balance between complete removal and... relative rest or sub-symptom threshold.
"Severity is on a continuum," Conway says, adding that people have the best success of recovery with a targeted approach to treatment and a comprehensive management plan. "Not all concussions need the extremes of removal from things."
Early, active and low-risk activity that still allows patients to rest but where rest does not dominate the plan of care, Conway says, provides the most benefit, physically and mentally. In other words, movement is medicine.
He points out that there are few conditions or injuries where complete rest is an effective treatment. Consider back pain or ankle sprain, for example: while rest from "provoking" activities that would result in further injury or prolonged recovery is clearly required, early, sub-symptom, low-risk activity helps facilitate recovery while limiting effects of absolute rest, such as de-conditioning, stiffness, compromised circulation, and psychological complications. Those psychological effects include depression and anxiety; it's well-established that social interaction, purpose, and a sense of normalcy contribute to overall well-being.
Because injuries occur along a continuum of severity, Conway says, the amount and duration of rest or activity restriction is often best guided by symptoms rather than a blanket ban. Similarly, with concussions, he says, the trend is shifting toward early activation versus the traditional "complete rest until symptom-free."
Back in Action Physiotherapy has partnered with Complete Concussion Management (CCMI); so has Whistler Mountain Ski Club (WMSC). The aim of CCMI is to ensure that evidence-based, best-practise care derived from published research reaches health-care professionals and policy makers. It calls for an interdisciplinary approach among athletes, doctors, family members, therapists to managing concussion. (It also links those individuals via electronic medical-record sharing and smartphone technology.)
Mark Tilston remembers how, decades ago, the advice doctors gave people who had taken a hit to the head was essentially to pick themselves up again: "I'm coming from a generation where, you banged your head, you had a wee rest, maybe were sick in the afternoon, then would sleep through the night and get up the next day and pretend nothing ever happened," says the WMSC executive director. "A lot of people went through that and are worse off for it, and now we're seeing the long-term effects of concussions."
He says being able to consult CCMI helps coaches and others navigate the complex world of concussions. The group urges athletes to do baseline testing, which gives health-care practitioners critical information about their patients' recovery and readiness to return back to high-risk sport if they do suffer a concussion.
"It gives us more information on how to respond," Tilston says of being linked with CCMI. "There is a lot of conflicting information about when you should return to sport, and I consider skiing to be a contact sport any day. Even if you say you're going to go up and take it easy, you can still lose a ski and fall over or somebody can ski into you. There's never a guarantee, especially on this mountain."
While baseline testing is a given for athletes or others regularly involved in high-risk activities, it's not something that members of the public seek out, those who find themselves in the emergency department after slipping on the ice or accidentally slamming their head into a cupboard.
CCMI defines concussion as a neurologic injury that causes a temporary disturbance in brain cells as a result of extreme acceleration or deceleration of the brain within the skull. That disturbance causes brain cells to discharge uncontrollably.
What happens next is an imbalance within the cells of the brain, which leads to an energy deficit as the cells consume all of their energy stores to reset a normal balance. These energy stores decline over the three to seven days following injury, when rest is absolutely necessary to help to conserve those energy stores.
Also known as a traumatic or closed brain injury, a concussion may or may not involve a blow to the head; it could result from a hit to the body or be the result of any sudden jarring acceleration/deceleration motion that causes the brain to jostle within the skull and bang against it.
Aside from obvious causes like crashing on a ski hill or bike trail, it can result from a fall or slip, a tackle, an assault or fight, a car accident or any other source of whiplash, or even from whipping your head around too quickly. You don't need to lose consciousness to sustain one.
Symptoms of a concussion include pressure in the head, neck pain, blurred vision, fogginess, confusion, drowsiness, emotional irritability, sadness, anxiety, and just not feeling right.
Little is known about what causes post-concussion syndrome, but CCMI says it appears to occur because of continued blood-flow abnormalities in the brain, continued energy deficits in the brain, problems with the vestibular system — the integration between visual and balance systems — or potential dysfunction in the muscles and joints of the neck.
Dr. Cathy Zeglinski has a unique insight into concussions: she treats patients suffering from them in her practice at Northlands Medical Clinic, and she is a mom to an active 15-year-old son, who has had more than one.
Most recently, he struck avalanche debris with his head while skiing; he experienced intense symptoms for about five weeks and is still dealing with dental issues after knocking out two teeth. Two years ago, he was airlifted from Whistler to BC Children's Hospital after a concussion that was accompanied by a broken jaw.
She is concerned that people may rush their recovery to detrimental effect or turn to various therapies too soon.
"Whistler kids are very prone to high risk-activity repercussions," she says. "We see a lot of concussions, and historically the problem with concussions is people were pushed back into regular activity by themselves and by everyone else too quickly."
Zeglinski points to the Brain Injury Association of B.C. and its Brainstreams.ca website as credible resources on concussions and maintains that treatment for prolonged concussion symptoms includes calls for light exercise such as stretching and yoga and decreased external stimuli.
"For prolonged concussion, it may be helpful to have some retraining tools, but in the immediate concussion there is no place for that because it can actually provoke symptoms... That's what I'm seeing a lot — people feel pressured to go to physio thinking it's going to cure them.
"A concussion is not a hardware issue; it's a software issue," she adds. "Just like when your computer freezes and you need to reboot it; you close it down and you give it some time. That's what a concussion is. The software is scrambling. Something is overloaded. You have to let it reboot, rest it, and then it will start to function again."
People should get their doctor's consent before returning to intensive exercise or competitive sports and return to work and school on a graduated basis, according to Brainstreams. They may need modified work duties or a reduced course load as well as frequent breaks.
Making headway during recovery
Allison McLean, vestibular therapist at her Peak Performance Physiotherapy practice, says no two concussions are alike: "Every concussion is a snowflake," she says.
In many cases, she will recommend patients see a neurologist to rule out other, serious health conditions. McLean says that concussion management often involves identifying and addressing problems with the visual and vestibular systems.
The vestibular system is the apparatus of the inner ear that connects with the brain and eyes and is involved in balance. When it's disturbed, it can cause dizziness and nausea, among other symptoms. Vestibular therapy is an exercise-based program to improve balance and reduce dizziness-related problem via balance and vision exercises.
Problems with the neck and upper cervical spine can lead to concussion symptoms as well, McLean says. Manual physical therapy can help offset symptoms such as headache and dizziness. "We do exercises to give you back your proprioception, very much like standing on Bosu would help with an ankle injury for giving you balance," she says. "We have things we can do with your head and neck muscles to give your balance back. We can mobilize upper joints and do exercises to help increase or decrease tension in the muscle."
Intramuscular stimulation (IMS) or acupuncture are approaches that can help decrease muscle tension as well, she says. Sleep hygiene, meanwhile, is crucial: sleep deprivation is a common effect of post-concussion syndrome. Avoiding caffeine and not napping during the day can help; so can acupuncture.
"Having post-concussion syndrome is like running out of batteries," McLean says, noting that getting back to daily routines involves pacing and planning. "That's a really hard thing to do when you're trying to get back to work and get back to school," she says. If going out for coffee with a friend results in feeling like you need to be in bed for the next three days, people need to learn to slow down and say, "no." McLean says occupational therapists help people with this and also go into people's homes to make sure that their surroundings are safe.
Some people turn to neurofeedback to help with recovery.
Of the 60 or so patients registered psychologist Stephen Milstein and his wife see every week at their Mountain Psychology and Neurofeedback Centre in Whistler, as many as 12 come in because of head injury.
Milstein treats brain injury with neurofeedback, though he acknowledges it is not yet an evidence-based treatment. Neurofeedback gives people information that reinforces certain brain patterns.
"My experience is neurofeedback can reduce concussion and brain injury symptoms," he says, noting that the number of sessions required depends on several factors, including when the concussion was sustained, how severe it was, and concussion history. "Brain injury affects you cumulatively."
Counselling is another component of treatment that people find helpful. Registered clinical counsellor Greg McDonnell explains that clients who come in with concussion-related challenges typically experience profound grief and loss. "This is often connected with loss of identity structure, as their sport or work is a central part of how they define themselves," he says. "Once they cannot do it, there is a big void. Depression is also a big symptom coupled with anxiety."
He draws on cognitive behavioural therapy, narrative therapy, and mindfulness to help people with grief, loss, depression, and anxiety. "Counselling can... normalize their symptoms while offering an opportunity to discharge how they are feeling with a focus on strategies to manage triggers. People who experience concussions often tackle the healing alone. I recommend reaching out to a series of practitioners who can assist with providing complementary services to support return to life."
Compounding the physical, mental, and emotional effects of concussion and post-concussion syndrome is the financial hit so many people take. Those who aren't injured at work don't have benefits to help them cover the costs of various therapies, never mind sick days or disability leave.
It may cost around $150 for an initial physiotherapy assessment, $200 for neurofeedback, and $100 for a counselling session, and those expenses quickly add up. The stress can mount as a result.
Jana Kapp, a physiotherapist and vestibular therapist at Back in Action and at Pemberton's Local Motion, says: "It's very expensive to live in Whistler, that's another part of the concussion journey that can take its toll. You've got to be able to pay your rent, your mortgage, and pay for food... A lot of people might be told to rest, but they can't afford to stop working."
Kapp notes that outreach workers at Whistler Community Services Society can help people living with the effects of concussion, who may be eligible for subsidized counselling or gym memberships. They may also be assist with paperwork associated with EI or point people to other resources. "They are fabulous to talk to in order to help you navigate that financial issue," she says.
Support group provides a lifeline
Tara O'Doherty knew something was wrong after she slipped on her driveway in December 2008. She didn't know at the time that a concussion would result in what she calls the hardest part of her life.
The Whistler resident and part-time comic initially went back to work and the computer screen seemed weird. Her doctor ordered a CT scan then told her to sleep as much as possible. About six weeks in, her symptoms started to get worse. She had no short-term memory and developed a stutter.
As anyone who has sustained a concussion will attest, the condition is an invisible one. There's no cast or stitches; people dealing with the aftereffects appear "normal."
Here's how Zeglinski puts it: "It's a hidden illness; no one can see it and no one can touch it, so it's very difficult for patients. There tends to be a period of time where there's frustration from employers, from parents, from family and friends that it's no longer an injury and person is feigning it to some degree."
Ultimately, it took O'Doherty a year and a half making regular trips to the G.F. Strong Rehabilitation Centre in Vancouver before she began to feel like herself.
"A team of specialists helped me get back to Tara again," she says, noting that she worked with occupational therapists, neurologists, and cognitive behavioural therapists. "They helped save me and bring back Tara.
"It was the worst thing to happen to me but the best thing to happen to me," she says. "I became a different person wanting to helping others going through concussions, knowing if I could get through it, they could get through it."
That's what drove her to start Head Wound Productions, the stand-up comedy troupe that recently co-hosted the Whistler Comedy Showdown, with proceeds going to the Whistler Concussion Support Group.
Patricia Stoop started the group in 2015, the occupational therapist having had multiple concussions herself.
The goal of the group was to be run by someone who had a health-care background as well as personal experience in recovering from concussions. (For the time-being, the group continues to be run under the umbrella of Sea to Sky Community Services. The next series starts in the fall.)
In addition to providing support, the group aims to provide self-management strategies for recovery and connect people to different therapies available in Whistler and the Sea to Sky corridor. Guest speakers from the community are invited to discuss therapies such as vestibular rehabilitation, physiotherapy, and pacing and planning as well as alternative approaches such as neurofeedback, yoga, float therapy, and meditation/mindfulness.
Kapp's also a co-facilitator of the support group — having initially joined as a participant herself.
Kapp has had three concussions, each about a couple of years apart — the first two while she was skiing, the third while she was at home and that resulted in her being off work for months.
"We're all susceptible to concussion, it's just that this town is that much more high-risk because of the sports we participate in," she says.
"It took two or three years to get to the point where I feel normal — my new normal," Kapp says. "Part of that journey was looking for answers... The support group was a huge aspect that helped my recovery. When you're living with a concussion, all of a sudden it's like your whole life is taken away from you. All those things that make you you, you can't do — social stuff, activities, work — and you end up really isolating yourself; it's hard sometimes to engage with someone one on one.
"Every concussion is different, but going to a group and finally meeting other people going through similar aspects means you have that ability to relate to someone," she adds. "It was hugely helpful to know I wasn't alone in what I was going through."
While emphasizing that there's no one-size-fits-all treatment, the group touches on self-management strategies as well as goal-setting.
"You want to get back to normal life... but how can you get back to skiing when you can't even walk for half an hour explains Kapp? "You take small steps. It made me feel confident in achieving goals. You start working toward them, and that empowered me.
"I've had people tell me 'you should be better by now. That is the other great thing about the support group: There's no time frame, and you will get better but you have the support to take the time you need."
Perrault says that although it took her two years to start to feel "human" again, people need to hold on to hope.
"An educational concussion support group gives a place for us to go to feel normal and learn from our peers and learn about different resources that we can use for our personal unique concussion," explains Perrault. "I want everyone to know a concussion and post-concussion syndrome are multifaceted injuries that for many require a multidimensional team, which is critical in recovery. I do not want anyone sustaining a brain injury to ever give up."