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.

Living with brain injury

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.

 

 

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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.

Sometimes I think the real trauma fo acquiring a brain injury comes after the actual injury itself - Mark Koning

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.


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.”

A still from the play Brain Storm, a woman in an old fashioned surgeon's uniform pulls off her gloves

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?”

A woman in old fashioned surgeon's gear looks at the camera

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

bist-1.ca-Platinum-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.

Football player with ball about to fall to the ground

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.

woman wearing a skirt standing with her bike

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.


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.

Hospital emergency room entrance

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.

locker room

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.

Woman playing basketball

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.


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.

two friends talking
photo credit: Two girls talking via photopin (license)

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Eat your GREENS this Brain Injury Awareness Month!

BY: JANET CRAIG

Brain Injury Awareness Month is here – and to celebrate ABI awareness and help us get our green veggies on , our columnist chef Janet Craig has written a super-green salad recipe for us to enjoy.

(Because green is the colour of brain injury awareness!)

asparagus, fiddle head and pea salada
PHOTO: JANET CRAIG

 

Ingredients:

1 bunch of asparagus cleaned & cut into diagonal pieces

2 cups frozen peas, thawed

1 to 2 cups fiddleheads, fresh or frozen

1 bunch of green onions cut into diagonal slices

  • If you want to add protein the a cup of Feta cubed is nice

Dressing:

1 lemon, zested & juiced

1/3-cup vegetable oil

1 tbsp Dijon mustard

salt & pepper to taste

1-tablespoon tarragon vinegar (or use 1 tsp dried tarragon & 1 tbsp white wine vinegar)

Instructions:

  1. Steam asparagus and fiddleheads (if peas are fresh add them) on high 2 minutes. Plunge into bowl of ice to blanch.
  2. Mix all vegetables into glass bowl.
  3. Mix up dressing and pour onto salad.

Chef Janet Craig recipes are simple, healthy, delicious and ABI friendly.  You can find out more about her HERE.

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