There is a saying, ‘no two brain injuries are alike.’
This is true, every acquired brain injury is indeed different. But these horrid ABIs share some commonalities, and one in particular is fatigue.
Similar to brain injury, fatigue is invisible. I find it to be hiding in the corners of my brain, lurking in the shadows. It seems to be ready to jump into action at any given time of the day. A nap, or extra rest, does not cure it.
extreme drowsiness, typically resulting from mental or physical exertion or illness.
I’m not sure if people understand the effect fatigue has on someone living with a brain injury. I find it comes in waves and at various levels of low, mild and extreme.
It is a silent paralyzer, and never a pleasant experience. It is disorienting. One could almost wonder how much worse it possibly get?
Remember last summer? 2016 was the hottest year on record. This summer we have some relief, but the heat and humidity persist on most days, and they are a lethal instigator of fatigue.
While I’m not sure what is the best way to beat this devastating duo of fatigue and the heat wave, I know there must be a way to deal with it.
Perhaps it is inner strength, or knowing how to slow yourself down and breathe. Maybe the answer is to go for a nice cool swim or take a cold shower. Regardless of how staggering it can get, like with many things, I will get through it and survive.
I’m sure any of us who come up against these monsters can do the same. (And remember, fall is just around the corner.)
But sometimes I wonder, which is harder? Dealing with the fatigue or dealing with the fact that others don’t understand why I’m dealing with the fatigue. Maybe it is me not always telling people that I’m trying to deal with the fatigue.
Wow, that’s confusing, but that is also brain injury.
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
BIST members had the opportunity to learn about Team Theraputix’s ODSP Program – which allows people on fixed incomes to receive physiotherapy for just $50 a month – at a Community Meeting last fall.
At our meeting, many of us were amazed at the generosity of the program, which was created to ensure people who would otherwise not be able to afford crucial physiotherapy services, access the support they need. Many of Team Theraputix’s clients have brain injuries.
Like any private physiotherapy clinic, Team Theraputix is a business, they need to watch their bottom line in order to survive. But their ODSP Program literally puts people before profits. How often do you see a business do that?
Now Team Theraputix needs your help – they are being forced to raise the cost of their ODSP program due to financial constraints. They don’t want to. As many of us know too well, when you’re on a fixed income, literally every penny counts.
Imagine, for a moment, that you or your loved one have sustained a traumatic injury. Imagine getting that phone call from the hospital or being rushed there. Imagine that your family is in a state of crisis, but doing everything to keep it together. Imagine that conversation with the doctor when you are told that your life will never be the same again.
Fast forward to the discharge from the hospital. There is nothing else they can help you with. You take a few days to settle into your new life. You start making phone calls. You realize that OHIP will not take you very far. You realize that your journey will be very difficult.
You finally find a private rehabilitation centre which can offer you assistance in your recovery process. You become hopeful. Now, imagine seeing how much this new hope will cost you and suddenly your heart drops into the pit of your stomach. You realize that you do not have that kind of money. Imagine feeling that disappointment while pushing back tears.
Team Theraputix in action (Photo courtesy of Victoria Tolmatshov)
I have sat across the table from too many individuals to count who are in that very situation. My heart broke watching them leave my clinic knowing that there was nothing I could do to help. Constantly reminding myself that this is a business and there was a fee for services- just like everywhere else. I stayed awake at night thinking about these people. Rehabilitation is just one of many things a person with a traumatic injury has to deal with and there weren’t any options available to make the process easier.
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In January of 2014, after another meeting with a family unable to pay for our program, I decided that it would be the last time I ever disappointed someone in need of help.
I started doing my research and found that most people who were unable to afford private therapy were receiving Ontario Disability Support. I was shocked to find out that the maximum funding was just over $1100.00 per month. I realized that we live in a society where many people in a vulnerable situation just fall through the cracks and do not receive adequate support from the government.
I decided to make a difference. I created a low cost physiotherapy program for those receiving ODSP. The program offers one on one physiotherapy two to three times per week (eight to twelve per month) for $50.00* per month.
I am unbelievably proud of this program and all of our clients who have made amazing progress finally getting the help they need and deserve.
I am happy to know that we can now offer people options and I am overjoyed knowing that I will never have to disappoint someone in need of my help again.
*Victoria wrote this piece before needing to change the fee structure of the program.
Victoria Tolmatshov is the owner of Team Theraputix
Support The Team Theraputix OSDP Program!
Barbecue – Saturday, August 5th, 12-4 pm, Register HERE
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 BrainPenfield 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.
For you Lemon Lovers out there, this is an old cottage recipe I keep on a stained recipe card, its origins long forgotten. The recipe says it serves six, but everyone loves it so much, it really serves four.
2/3 cup sugar
2 tbsp soft margarine or butter
Grated rind of 2 lemons OR 3 limes
1/3 cup fresh juice
2 large eggs separated
1/4 cup flour
1 cup milk
Preheat oven to 350°F
1. Beat egg whites until peaks form.
2. In a separate large bowl beat all ingredients, then fold in the egg whites.
You can bake in a greased dish or buttered individual ramekins. Bake for 40 minutes. Serve warm or cold with fresh berries.
Chef Janet Craig’s recipes are simple, healthy, delicious and ABI friendly. You can find out more about her HERE.
Seven years ago, Shelley’s family survived what should have been a fatal carbon monoxide leak in their house. She writes how her faith has helped her family survive and thrive in the seven years since.
In the blink of an eye, so many memories vanished. I wish I could have chosen which memories I could keep and tossed out the ones I wanted to forget. I know the memories which remain are what make me who I am today. I would be a different person right now breathing, talking, and living if I didn’t retain some of the things I lived as a child and as a young adult.
Valentine’s Day 2010 would turn into a complete game changer for my family, a day we will never forget. I’ve documented this day in words so if the day comes that the memory is gone I can always, reflect back on our second chance at life.
We were experiencing a Texas Winter and the six inches of snow which covered our town knocked our power out for three days. Fed up, on the third day we ran a generator out in the front driveway with the garage door and windows open. The Fire Chief later told us that the lack of wind and frigid air that day meant the gas settled into our home via the eave troughs instead of blowing away.
That night, my daughter, Taylor, woke suddenly to someone screaming her name. She jolted up in bed, tried to stand and quickly realized her legs wouldn’t hold her up. She fell to the floor.
From there, she crawled to her door and tried to stable herself but couldn’t and collapsed again, all the while having the frightening feeling of tunnel vision where you can’t really hear or see.
The thud of her fall woke me up and I ran to her. My then husband, Charlie, heard from the living room and he and I met at her doorway and found our daughter lying, lifeless and facedown. Not knowing what’s wrong with your daughter, when its too dark to even look her in the face is the worst thing I have ever felt.
Charlie was shaking her and trying to get a response. He sent me to get a flashlight that was on my nightstand. We were beside ourselves with fear. On my way to the bedroom, I started feeling as though I was losing control, and as the seconds passed I knew I had to let Charlie know something was seriously wrong with me. I had the flashlight in hand, and started running back to the hall, but the closer I got to Charlie, the further away he seemed. Everything was spinning out of control and I was losing awareness of where I was.
I knew if I didn’t make it back to him he wouldn’t know to come find me. When I turned the corner to the hallway I collapsed face first without my hands or arms to brace me, falling onto the metal flashlight and cutting my forehead open, exposing the skull. Charlie was searching in the dark for the flashlight as it had rolled when I fell and I was trying to tell him I felt blood running down my face. Things were completely out of control.
Once he found the flashlight, with one look he said he had to get me to the hospital. I said, “What is wrong with Taylor, doesn’t she need to go?”
Somehow in my head I knew she had started this whole ordeal and my mommy intuition kicked in. I was more scared for her than me!
Meanwhile, Taylor was drifting in and out of consciousness. Charlie managed to wake her, and told her she had to go get a towel to put on my head to help with the bleeding, which was now pulsing out of control from my head. We were all covered with my blood. How she made it to the bathroom to retrieve a towel is beyond any of our comprehension.
Immediately after she returned, Taylor lost consciousness again. Charlie dragged her over and propped her on top of me, against the wall as I was having convulsions and banging my face into the floor. My eyes were rolling back in my head, and Charlie yelled at me not to die on him.
Charlie called 911 and first to respond were the police. They used their flashlights and the first thing they saw were my bloody handprints in our hallway where I tried to stand, and Charlie covered in my blood. Needless to say, they turned their suspicions onto Charlie.
Shortly after the fire department arrived, and the Fire Chief began asking different questions. Charlie explained we were using a generator and immediately the Chief went to the truck to get the carbon monoxide detector. The truck was parked at the street and within steps of entering our driveway the readings on the detector began to rise quickly, so much that the Chief went back to the truck to recalibrate the device as he was not believing the high readings. Once again, walking in the driveway up to our front door the readings began to creep higher and higher. Upon reaching the door he called for his crew to exit the home and began to get Charlie, Taylor and our dogs out. A couple of paramedics were left inside with me to get me stable enough for transport to the hospital. Once outside, they realized that Taylor had “started” this whole incident and the firefighters told Charlie they wanted her checked out as well. I left by ambulance and Charlie and Taylor in his truck.
On route to the hospital, through nothing other than God’s grace, Taylor made some of the scariest and bravest phone calls she’s ever made to my sisters alerting them of what had happened and seeking their immediate help. She was much too young to understand what was going on or what was wrong with her mom, she just knew they had to get there quickly!
Several firefighters went above and beyond the call of duty and stayed at our home to open windows and stay and watch our dogs for sickness and make sure they were in a safe place before leaving.
Once at Mansfield Methodist Hospital they checked mine and Taylor’s blood gases and they were “through the roof”. Worse, my daughter’s levels were much higher than mine.
They began preparing us to be transported to Dallas Methodist Hospital to get in their hyperbaric chamber. First my head had to be stitched up, 15 stitches total, and I had to have a CT Scan to make sure I was transportable. Then off we went, on the ice, Taylor and I in the ambulance, her sitting and me on a stretcher both with oxygen on.
Upon arriving at Dallas Methodist Hospital, a doctor explained the procedures for going into the hyperbaric chamber, which was difficult to understand considering everything. I must add that at some time after our arrival we found out that the family which had just been in the chamber all died, except the father!
I was terrified for Taylor and myself! Taylor and I are both very claustrophobic, but we are survivors after our approximate three hour stay in the hyperbaric chamber.
Two Ambulance rides, one CT scan, two blood gases, two Hyperbaric chambers, 15 stitches and one concussion later, we survived! Nothing says ‘I love you” like a brain injury on Valentine’s Day.
Shelley’s dog Cruella
Shelley’s dog Gaby
My sister, Kimberley, moved in with us for about a month. Physically I was trying to heal my head, but mentally I was left with a traumatic brain injury. I started over with kindergarten flashcards, looking at an apple and saying library, and my friends and family completed most of my sentences. They scooped Taylor and I up and helped us heal.
My neurologist told me that people don’t survive what we went through and there really aren’t patients like Taylor and I. He said he didn’t know how to treat me. I cried and he was visibly shaken. Through his honesty, he became a great comfort to me as I struggled with memory and cognitive skills. We became a little closer that day and I knew he had chosen the right career.
On another of my early visits, he took his hand and made a fist and began knocking on my forehead. He said the poison goes into your brain and destroys whatever it attaches to and we have no control over what functions it destroys or limits.
To this day, my short-term memory is horrible at times, and I’ve lost so many precious memories.
Taylor and I have a saying when it comes to trying to remember things, we just look at each other and say, “Did we have fun?”
The one who remembers says to the other, “Yes, we had fun!”
That’s all that matters. But, to be alive, in whatever capacity, is amazing! I continue daily to deal with migraines, balance, breathing, vision, memory or the lack thereof. These are daily struggles for both Taylor and I.
I have fallen more times than I’ve stood, and had injuries that ranged from Band-Aids to orthopaedics visits. For six years, my greatest challenge was breathing, but now I struggle with a chronic migraine. Right now, I am close to 100 days straight of my head hurting. Every day at some point I struggle to breathe and coughing has become my norm. Some days are better than others. Sunny days are my friend. On cold, wet days I lean on my faith for every breath I take.
The more I talk the worse my coughing gets and I talk so much for work. Recovery continues every day for me and Taylor and luckily her Dyslexic brain is used to accommodating skills and this continues to be her saving grace on a daily basis. She is young, so strong, her faith is incredible, and healing has come differently for her, but memory and migraines are big battles for her. I’d love for you to pray for her right now.
Many days are challenging and bring a stream of tears but I try my best to remember that God knows the plans for me and Taylor. He knew the breaths that would follow would bring challenge, He knew this, He knew. Through it all, truly through it all I will trust Him.
God used this disaster to dissolve a broken marriage and link my life with the most amazing man, through merging tears, broken hope, and many answered prayers.
Taylor Trammell graduated in May with her Associates degree and will soon be an American Sign Language Interpreter.
Shelley Taylor will publish her book, “With My Last Breath, I’d Say I Love You: When your FAITH and HOPE slip, GRACE wins every time” March 1, 201
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.