A year with a different brain

A version of this article was originally published on March 18, 2017

BY: ERIN MOORE

On March 18, 2016 my husband Davin sustained a concussion.

I write this on the one year anniversary of my husband’s injury. It brings an incredible mix of emotions. It has been the hardest year of our lives; financially, mentally, physically and emotionally.

We have cried more together this year than we have in our almost 20 years of time with each other. We have been in dark places this last year, individually and side-by-side. We have battled this brain injury together, but alone.

Concussions are invisible to most. The terms the ‘walking wounded’ or the ‘invisible injury’ have been given to concussions because the majority of people surrounding someone with a concussion aren’t aware of what that person is braving, or managing, or being held captive by. I’m not writing this post to educate you on what a concussion is, or to understand post-concussion symptoms, you can go google that.

I’m going to share with you my experience – as a wife, a partner and a best friend of someone who has been battling concussion symptoms for one year – with no win in sight, and still far away from the finish line.

It was three months into Davin’s concussion that I really started to feel the first feelings of being scared. Davin had concussions before, and I had seen at times some very bad symptoms from it. But they all cleared up relatively quickly and he became his regular self again. Last June his neurologist told us to expect at least a year for recovery, maybe longer. This news shook him, and me, and it set off a whole new dimension for us.

Up to this point, it was almost like I had watched Davin run into a brick wall over and over again, trying to make strides towards a little bit of improvement but getting stonewalled over and over again. After the neurologist’s prognosis, Davin stopped running into that brick wall and just starred at it instead. The light of perseverance, determination, optimism and strength started to dim. I could see him fall into a darker place, faced with the reality that it was going to be a long time until he got better, and no one could tell him how long it could be or what he needed to do to get himself healthy again. The frustration mounted, when all the therapies, practitioners, counsellors, specialists, supplements, food eliminations, (you name it, we tried it) failed to work.

Sure, some people may have seen some snippets of Davin’s behavioural responses to his concussion, but they didn’t get the full picture. Most people saw the same guy they always knew, only off work, and unable to do his usual athletic and social activities. That’s what makes it really hard for people to understand what happens to someone when they are living with a concussion. There is a side that is invisible and unseen by most, even close family members. It’s uncontrolled, reactive, irritable and mean.

I learned quickly that I could never take anything that my beloved dished out at me personally. Davin – the true Davin – did not want to react to situations the way he did but he lacked the filter or response to slow down, think and choose his words or behaviour before acting them out.  The remorse and shame that follows an episode is equally hard to watch, as seeing Davin in emotional pain scratches and slices my heart over and over again. As his partner, there are so many times I felt completely helpless, and at times,  still do, as though I’m stuck in the path of the concussion’s unpredictability.

The cycle of a concussion is vicious. It first brings physical and mental pain, then triggers emotional pain, which trigger symptoms, which trigger depression and so on.

Ah that word – depression.

I’m scared of that too. A common byproduct of a concussion is this whole other layer of depression and the inability to balance emotions. I again played spectator to Davin as his depression started to guide him, as his clarity on life was now being mismanaged by a giant bruise on his brain and a chemical imbalance. His brain wasn’t firing like it used to and tasks that those with uninjured brains take for granted – like going to grab some groceries – were daunting and debilitating, resulting in frustration and anger. This would then trigger intense fatigue, malaise and depressive states.

How would you cope? Eventually we learned the patterns and together started to identify the triggers. We figured out a management plan and I stood by my man and let him just be, as he needed to be in that moment. No judgement. No resentment. Just love.

By this point we were deep in the summer months in Whistler, B.C. We had decided moving to Toronto was the best choice for us. We were down to one income, with Davin’s Short Term Disability payments ending at the end of June, we had both kids in daycare and we were starting to see for the first time in our adult lives that if we continued like this we were going to be in some financial strife quickly.

Managing his medical and disability applications were also incredibly taxing on Davin, and in September I took over full management and advocacy for his medical paper trail. We were banking on Davin’s Long Term Disability claim to be accepted and which would drastically turn things around for us. But, after six months of waiting for a decision, they denied Davin’s claim. We appealed. They denied us again. We appealed again, and one year later we are still waiting.

So now what?

How do we keep going when the concussion and depression continue to hold my husband in captivity of who he once was. How do we raise our kids so they understand what has happened in the last year but remain resilient to times that have been trying for them, and us. How do we show them that we are strong and brave and that we will get through this? That concussion won’t beat us.

I can tell you what we did, and do everyday, to do our best to stay above the concussion and depression. We allow us the power to choose.

Whistler wasn’t working for us at that time, so we chose to leave and went on an adventure, that was healing.

We chose to move across the country to be closer to family for support and for filling our heart up when we needed it.

We choose to ‘move slow to move fast’, words spoken by a wise confidant that have made all the difference for us.

We choose to do only a little bit, and not all of it, and manage each moment for what it is.

I chose to not go back to a job that would take me away from my family 40+ hours a week.

I chose to start a business to create a different path for our family where we can create and grow in line with the pace that Davin’s brain needs to heal.

I have days where I feel so alone, that no one truly understands what it is like.  I have days that are really hard. But despite the torture this last year has been, I have so many things I am grateful for that would not have come to be had this concussion not happened. I have learned, like to no level I’ve known before, what it means to be patient, to have compassion, to listen, to be brave, and to be present.

It’s taken me a long time to open up and allow myself to share the truth of my experience and allow myself to be vulnerable. I hope these words resonate with one of you readers.

Share my story.

Learn about concussions and talk about it, and keep talking about it. More awareness needs to be raised, more understanding about what those who suffer are going through. We need to show more compassion for those that live each day in a fog of their brain injury.  We need more support for ways to manage and cope for those with the injury and the people that are by their side.

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Erin is mom to two amazing children, and wife to an incredible husband. She has a love for travel, yoga,and bringing people together on issues that matter. 

I live with brain injury: walk a mile in my shoes and you will understand

BY: LEAH DANIELLE KARMONA

Living life with a brain injury is difficult. People who do should be commended for trying their best and never ridiculed for their situation.

Everything takes more time to do. Depending on which part of the brain is injured, your hands may not work right, you may have learning challenges, your speech may be hard to understand, mobility may be an issue, you may have personality changes, your reaction time may be slower.

Everybody says, ‘Just stay positive about it.’ But they don’t live with a brain injury. People say the most inappropriate things like, “Oh you have got to be less sensitive about this.” They aren’t in my shoes. They have no right to say this. A brain injury can cause massive problems. People don’t realize this until they actually have lived the experience of someone with a brain injury. Then they realize, “Holy Hell!” What did I sign myself up for here? I know nothing about living with a brain injury.”

And then a whole new life begins. People who live with a brain injury are heroes and should be commended for doing their best. Walk a mile in their shoes and you will understand.

 

 

The waves of ABI-related trauma

BY: MARK KONING

If you ask me, any type of brain injury is traumatic, whether it is acquired by a motor vehicle collision, an aneurism, a viral infection etc.

Living with the challenges of ABI, which can include headaches, nausea, fatigue, chronic pain – among other countless symptoms – can be brutal, and this brutality often comes in waves. Brain injury is often invisible, episodic, and quite often, not understood.

Sometimes I think the real trauma of acquiring a brain injury comes after the actual injury itself. I think many survivors of brain injury handle the initial challenges of their injury better than the ongoing aftermath, the reactions from others to their injury, and their own mental well-being.

I am happy for those that try, for those that don’t turn away. I am lucky to be in the position I am and to have the support I do. Nevertheless, at times, it feels as though the trauma continues.

There are times I think it is my fault: for pushing myself too hard, or for not saying enough. There are other times I simply want to yell and scream. Sometimes I even get confused and scared simply by looking in the mirror and questioning my own feelings.

I don’t want to explain what fatigue means for me, I don’t want to justify why or how it is that I just know my headaches are not the same as yours, I want to stop feeling stupid every time I forget something and I see that look on the faces of others.

The trauma lives on.

I am doing the best I can.

I don’t want anyone to feel sorry for me, I just want them to understand. Because if others can start to do that, perhaps I can keep moving forward without feeling like one step up means two steps down.

Then maybe, I can put the trauma to rest.

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Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com

Come with BIST to see Brain Storm: a Toronto Fringe play about brain injury, a psychic medium and Dr. Wilder Penfield

BY: MERI PERRA

If you’re of a certain age and lived in Canada, you likely remember this classic Heritage Minute featuring neurosurgeon Dr. Wilder Penfield:

Taliesin McEnaney remembers the commercial well. A theatre professional with over 16 years acting, writing, producing and directing experience, McEnaney’s family tree includes a spirit channeling grandmother, Claire Ward. One of the spirits Ward channelled was Dr. Penfield. (For the record, Ward’s relationship with the deceased Penfield began in 1980, well before the line ‘I smell burnt toast’ became Heritage Minute famous in 1991.)

Also, McEnaney has a family member who lives with brain injury.

“I was researching epilepsy and seizures and Dr. Wilder Penfield was coming up quite a bit,” McEnaney said. “I was remembering he was [one of] my granny’s spirit guides. So I asked my aunt for all her writings and there are like 200 pages of typed up transcripts.”

After pouring through her grandmother’s notes, researching Dr. Penfield’s work and spending a year collaborating with four actors, McEnaney’s play, Brain Storm, about a woman trying to navigate through her new reality of living with brain injury, hit the Toronto Fringe Festival this week, and runs until July 15th.

(BIST Members can see Brain Storm for FREE on July 13th, and after join McEnaney to discuss the play. You must register in advance, HERE.)

“One of the ways [the main character, Kate] tries to [come to terms with her brain injury] is she turns to her grandmother, who is dead and had previously been a medium,” McEnaney said. “One of the messages she had channelled was from Dr. Wilder Penfield, and the message was that the mind goes on after death.”

Penfield’s work fascinates McEnaney because the neurosurgeon was able to change people’s reality – what they saw, smelled or heard – simply by placing electrodes on different parts of their brain. In Penfield’s book, The Mystery of the Mind: A Critical Study of Consciousness and the Human Brain Penfield theorizes that life after death is possible, if the mind can find a different source of energy. The brain, Penfield believes, is what fuels the mind.

From what McEnaney has experienced through her family member, this is similar to some of the effects of brain injury. A person’s injured brain may be unable to filter sounds and images, creating an intensity which is often overwhelming, leading to the question of what is reality and what is not.

“Without brain injury, we’re moving through the world not hearing so many things, not seeing so many things because the brain is filtering so we can focus,” McEnaney said. “When you are brain injured, everything is coming in at once and you’re becoming overstimulated because the reality is so intense. It’s like, ok whose reality is it?”

For McEnaney, it’s not important whether her grandmother really channelled spirits. (Though Ward’s notes on Dr. Penfield mimic his writings, which Ward had never read before she began channelling him.) But what is important is that her play opens up a conversation in the brain injury community.

“Every brain injury is different, and so is the one that you see in the show, but I think there are some commonalities that people will recognize,” McEnaney said.

Register HERE to see Brain Storm on July 13th with BIST!

If you can’t come with BIST on July 13th, you can buy tickets for Brain Storm HERE.

 

BRAIN STORM is co-created and performed by Hayley Carr, Maïza Dubhé, Shayna Virginillo, and Alexandra Montagnese. Conceived of and directed by Taliesin McEnaney, set and costume designed by Will Bezek with lighting design by Claire Hill.

 Thanks to our Event Sponsor

IMAGES COURTESY OF LUCID LUDIC

Why didn’t my bike helmet prevent my TBI?

BY: SOPHIA VOUMVAKIS

15 per cent of the approximately 18,000 traumatic brain injuries (TBIs) that occur in a year in Ontario are a result of a cycling accident. Every year in Canada, over 11,000 people die as a result of a traumatic brain injury (TBI) – using the same 15 per cent – that’s over 1600 people in Canada who die as a result of a TBI caused by a cycling accident. 85 per cent of all cyclists’ deaths in Canada involve a brain injury.

A little over five years ago, I sustained a TBI while riding my bike. It was a beautiful spring morning, and I was riding my bike to work, as I had hundreds of times before. I remember leaving my home that morning, and then waking up in the emergency room at St. Michael’s Hospital, several hours later. I was told by the doctors in the emergency department that I had been knocked off my bike, hit the ground, passed out, and taken to the ER by ambulance. Several hours later I was diagnosed with a brain injury. To this day, I have no memory of the incident.

I was wearing a bike helmet, which I always did, but my helmet did not protect me against acquiring a TBI. I’d always wondered why, and recently I got my answer. I came across a TED Talk by bioengineer (and former football player) David Camarillo, who, along with his team at Stanford University, has been able to demonstrate what really happens to our brain during a concussion, and why bike helmets, and other sports helmets, such as football helmets are not designed to protect against concussion, but rather, they are designed and tested to determine how well they protect against skull fracture.

What happens to your brain during a concussion?

The standard thinking of what happens to your brain during a concussion is that the head moves, the brain lags behind, catches up, smashes into the skull, rebounds off the skull and then proceeds to run into the other side of the skull. This dynamic is repeated many times. This understanding of what happens to the brain during concussion suggests that the brain is damaged on the outer edges.

In his Stanford University lab, Camarillo and his team, with the aid of new technology, have looked closely at what happens to the brain when it is experiencing a concussion. Their investigations suggest that the current thinking about what occurs to the brain during a concussion is not entirely accurate. Firstly, he does not believe that the brain moves around as much as current wisdom suggests. Camarillo argues that there is very little room in our cranial cavity for movement, perhaps a few millimetres, and our cranial cavity is filled with spinal fluid, which acts as a protective layer. Secondly, he suggests that the brain does not move as a whole.

Our brain is one of the softest organs in our body – the consistency of Jell-O – and as the brain moves around in our skull during a concussion, it is probably twisting and turning and contorting – the tissue is getting stretched. Concussion does not appear to be something that is happening to the outer edges of the brain, but rather it is happening somewhere much deeper, in the centre of the brain.

The Laboratory – The Stanford Football Team

To help Camarillo and his team better understand what is happening to the brain during a concussion they utilized a mouth guard equipped with sensors and a gyroscope, which most experts believe can tell us what happens to the brain during a concussion. When someone is struck in the head, the mouth guard records how the skull moves at a thousand samples per second.

The study’s laboratory is the Stanford football team, young men who regularly go out and hit their heads.  This allows for rich information to be obtained when the researchers extract the data out of the mouth guard.

When the data from the mouth guard, was combined with a finite element model of the brain, developed by Svein Kleiven in Sweden, it showed that the brain of football players, who have suffered a concussion does not smash around in the skull, as current thinking would lead us to believe, but rather twists and contorts. The data shows that the greatest amount of stretching occurs very close to the centre of the brain.

What’s there? The corpus callosum, the wiring which connects the left and right hemispheres of your brain. Camarillo believes that this might be one of the most common mechanisms of concussion, the wiring is being disrupted, which causes a disassociation between your right and left brain and could explain a lot of the symptoms one sees in concussion. This is consistent with what researchers see with Chronic Traumatic Encephalopathy (CTE) – when the corpus callosum of a middle aged, former football player is viewed, and compared to an individual who does not have CTE, his corpus callosum is greatly atrophied.

Although there is a rapid transmission of forces down to the corpus callosum when the head is struck, it does take a certain amount of time. What Camarillo and his team believe is that if we can slow the head down just enough so that the brain does not lag behind the skull, but instead moves in synchrony with the skull, then we might be able to prevent this mechanism of concussion.

How can we slow the head down?

The most currently used bicycle helmet is constructed of expanded polystyrene (EPS) foam within a thin plastic shell. The EPS liner absorbs the force of an impact by deforming, while the outer shell increases the area over which the force is dissipates. The main considerations when designing a bike helmet is the size and stiffness of the helmet, which impacts how efficiently energy is absorbed. As a result of the materials used in constructing an EPS helmet, the size of the helmet has been limited to a few inches. This does not slow down the head enough to enable the brain to move in synchrony with the skull, rather than lag behind the skull. It turns out that air, in an expandable helmet would be the ideal mechanism for slowing the head down enough during impact, so that the brain moves in synchrony with the skull, rather than lagging behind.

It turns out that a company in Sweden called Hovding, is using the principle of air to give the wearer of their ‘helmet’ some extra space to prevent concussion. Hovding has created what is essentially the world’s first airbag for cyclists. The Hovding is a collar, worn around the cyclist’s neck, that uses advanced sensors, similar to the sensors used in the mouth guards described in Camarillo’s research above, that can sense the cyclist’s movement patterns and will react in case of an accident. The airbag will then inflate, fixate your neck and provide a shock absorption. In experiments conducted by Camarillo and his team they have found that the Hovding collar can greatly reduce the risk of concussion in some scenarios, compared to a standard EPS bike helmet. The Hovding is currently for sale in Europe and Japan, and is CE labelled, which means it complies with European Union safety standards, but not for sale in the United States, and alas, Canada.

In the US, bike helmets are federally regulated by The Consumer Product Safety Commission. The Commission has jurisdiction over the type of helmets they approve. The test they use in order to grant approval to a bike helmet is testing the helmets capacity to prevent skull fractures, not whether the helmet is likely to prevent concussion. In Canada, The Canadian Standards Association accredits organizations to certify that bicycle helmets meet certain standards, such as CPSC bicycle helmet standard, which uses the tests described above by Camarillo.

I contacted Hovding and asked about the availability of their helmet in Canada – alas, it is not available here. They replied that, at this time, they have not investigated helmet certification in Canada. So it might take some time to get my head into one!

Even so, any helmet is better than no helmet, so keep wearing whatever helmet you have, and wear it properly.

 Resources

Modelling and Optimization of Airbag Helmets for Preventing Head Injuries,  published in The Annals of Biomedical Engineering in September 2016.

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Since her TBI in 2011, Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.

Without action, awareness does little

BY: ALYSON ROGERS

Nine years ago, I walked into an emergency room with very obvious signs of a concussion. Despite glaring symptoms, no one would even utter the word ‘concussion’. Doctors told me I had whiplash, which didn’t even come close to describing the traumatic brain injury diagnosis I was given six months later.

This year, I walked into the same emergency room, with very obvious signs of a concussion. Despite nine years of brain injury awareness in the media, in hospitals, in schools and in sports, my experience was no different.

What good is brain injury awareness if we don’t put it into practice?

April 2017 marked nine years since I acquired my brain injury. I experience symptoms every day and it looks like they are here to stay.  Like many others, I navigated the health care and education systems before brain injury awareness hit the mainstream. My family and I had to research and advocate for every bit of care I received. Even with a CT scan in hand, it was difficult to get doctors to believe, let alone treat my symptoms. This was before Sidney Crosby, NFL lawsuits and head injury protocols; the dark ages of brain injury.

This year, I learned that we are still living in the dark ages. Last month, I was hit in the head with a locker by accident at work. When my symptoms continued to get worse instead of better, I went to the same emergency room I went to nine years ago. It didn’t even cross my mind that I would be treated exactly the same as I was back then, this was the new era of brain injury awareness, right? Wrong.

There were three of us in the emergency room with concussion symptoms; the doctor barely looked at any of us and sent us on our way.  I returned to my family doctor, who has seen me do this concussion dance with the health care system before, and was sent to another emergency room. The second ER doctor told me what I was experiencing was impossible and seemed shocked when I dared to ask for WSIB forms to be filled out. Despite the blurred vision, noise sensitivity, nausea and fatigue he put a question mark beside the concussion diagnosis on my papers.

June is Brain Injury Awareness month in Canada and it’s a month I’m excited for and take pride in every year. Considering how prevalent concussions / brain injuries are, I think awareness is important for everyone,  but awareness isn’t enough.

Being aware is the first step but it is by no means the only step in preventing and responding to brain injuries. The next step is to put that awareness into action; this action is going to require effort and change by professionals and individuals.

It’s easy to say we are aware and be done for the day but if we don’t put in this effort for people with brain injuries, awareness falls flat and nothing changes. The very people brain injury awareness is supposed to be helping are failed all over again- stuck in the dark ages of brain injury.

The other piece of brain injury awareness that requires action to be effective is prevention. Awareness that leads to policies such as concussion protocols are great (if they are put into action and enforced) but this doesn’t lead to a decrease in people sustaining brain injuries. Brain injury prevention is going to have to come from individual change; with the increase in brain injury awareness, we know that a hit to the head can have lifelong impacts. With that being said, there is no excuse for deliberately hitting someone in the head.

Many brain injuries, especially sports-related brain injuries, are entirely preventable and occur due to individuals decisions. My brain injury stems from a youth athlete’s decision to use physical force instead of skill to win a basketball game. This is similar to Sidney Crosby, during the NHL playoffs he sustained another concussion at the hands of a player on the opposing team. It is very well known that Crosby has a history of concussions and another hit to the head could, at the very least, end his career. With the increase in brain injury awareness, we should be seeing a decrease in these types of injuries simply by individuals changing their behaviour.

My hope for this Brain Injury Awareness Month is to move beyond awareness and towards action.  This includes a decrease in the number of brain injuries and better outcomes for survivors.

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Alyson is 25-years-old and acquired her brain injury nine years ago. She graduated from Ryerson University and is a Youth Worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33

 

 

 

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Talking it out: ABI survivor and caregiver stress

BY: MARK KONING

Whether you are a survivor or caregiver to someone with a brain injury, it is sometimes quite difficult to find a confidant that you can feel comfortable talking with when it comes to issues such as the stresses, emotional trauma or everyday hardships that can be inflicted upon one’s life. An individual can run the risk of losing friends, or in some cases, even family members.

photo credit: Two girls talking via photopin (license)