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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May Community Meeting Recap: Chair Yoga with Kristina Borho

BY: JULIA RENAUD

During this sunny time of year, the days are long, the weather is warmer, and the flowers are wonderfully fragrant and in bloom. The true question is: do you take the time to smell the roses? Fortunately for us, Occupational Therapist, Yoga Tnstructor and the owner of Empowering Mind & BodyKristina Borho, brought her mindfulness and encouragement to lead May’s Community Meeting about chair yoga.

Kristina Borho

A whole lot of positive energy filled the room at this month’s meeting and Kristina’s passion and compassion kept the group intrigued and asking for more yoga therapy tips and techniques. She encouraged all of us to live in the moment and to engage with body, mind, and breath during the session, as well as in our daily lives.

Intention Setting

I was lucky enough to be one of the many participants at this very special community meeting and I am happy to share my experience with you!

One of the first things that Kristina told each person to do was to set an intention for the session. Intention setting, as I learned, is a very powerful way to gain perspective on how you’re feeling, and to recognize where you may need to focus your energy in order to feel better. Like Kristina, I decided that my intention for the following hour would be to find patience – something that I am slowly but surely learning – and definitely something that does not seem to come easily to me; allow me to digress.

I am known as a goal-setter and I have the ruthless determination to persevere to achieve any goal I set my sights upon, regardless of how much work it will take. Since my most recent concussion three years ago, I have had to face the fact that, while goal setting can be very helpful for some things, recovering from post-concussion syndrome (PCS) is not really one of them. PCS, like many brain injuries, is an unpredictable road that has its ups and downs and twists and turns much like a roller coaster. It also has the capacity to turn even the most realistic of goals on their head; hence my need to force goal-setting to take the back seat (as difficult as that is), and instead to persevere at being patient with the path that I’m on!

Chair Yoga Exercises

I believe I can speak for the group when I say we all need more yoga, chair or otherwise, in our lives! For this reason, I would like to share some of my favourite chair yoga poses that Kristina coached us through. I have given each of them a name so they’re easier to remember.

As you go through the poses, keep in mind our word of the night, elongated. What I mean by this is, for each pose, sit nice and tall, like there’s a string attached to the top of your head, pulling your head toward the sky and keeping your spine nice and long. Also, try to remember to think about the intention that you set earlier!

Down to Earth Neck Stretch:

  1. Sit tall in a chair with your feet flat on the ground, and your arms dangling at your side
  2. Breathe in while turning your head to look over your right shoulder
  3. Breathe out while tilting your head down to look at the floor while keeping your head turned to the right
  4. Switch sides

Shoulder Rolls:

  1. Sit tall in a chair, place your fingertips lightly on your shoulders
  2. Rotate your shoulders in backward circles
  3. Rotate your shoulders in forward circles
  4. Try to coordinate your breath if you can – breathe in when your shoulders rise, and out when they fall (this part can be tricky!)

Side-to-Side Slide:

  1. Sitting upright in your chair, place your right hand on your right hip, breath in
  2. As you breath out, side-bend your body to the left and toward the floor
  3. Inhale as you come back to centre
  4. Switch sides

 

Meditation

Kristina concluded the session with a brief body-scan meditation, thoughtfully conducted to take the mind away from all of the stressors of daily life, and instead to bring focus to various parts of the body, one by one. Doing a body scan is a great way to connect with how your body is feeling. I find it especially helpful in understanding the severity of my PCS symptoms and use it to check in with how my brain and body are handling the tasks that I am asking of them.

Generally, a simple way to compose a body-scan is to either go from head to toe, or the other way around. This helps to relax the mind while ensuring that you aren’t skipping over any important body parts that may require your attention. Your meditation can be as long or as short as you want, the key is to remember to remain relaxed and non-judgmental. If your mind drifts away to a thought unrelated to the task at hand, simply acknowledge that your attention has drifted, and regain focus on your body scan. At first this may seem really difficult, but try not to get discouraged!

With time and practice (in my case, a whole lot), you will begin to notice that your ability to keep your attention on the meditation will improve.

Collective Energy

I was able to feel how Kristina’s yoga therapy was able to change the energy in the room from buzzing and a bit chaotic, to happy and relaxed. By the end of the meeting, the group shared a true sense of togetherness, and isn’t that so important in brain injury recovery!

If you or someone you know is living with a brain injury, remember that these things can take time to heal, and you are never in this alone. So, take the days as they come and on your next walk or roll, don’t forget to take in that fresh air, and take the time to smell the roses!

Chair yoga - a group of 4 people sitting in a circle doing chair yoga, their arms stretched up

Next Community Meeting: Wednesday, June 27, 6 – 8 p.m.

TOPIC: Face Mapping with Occupational Therapist Amee Le

Everyone is welcome!


Julia Renaud is a very talkative ABI survivor with a passion for learning new things, trying new activities, and meeting new people – all of which have led her to writing this column. When not chatting someone’s ear off, Julia can be found outside walking her dog while occasionally talking to him, of course!   

 

I’ve had 4 brain injuries in 10 years – and I’ve met so many doctors who still don’t understand how to treat ABI

BY: ALYSON ROGERS

June is here and that means Brain Injury Awareness Month is here once again. Last year, I wrote a post about how awareness isn’t enough and we need to see action, in particular in terms of how concussions are responded to and prevented.

I wrote this piece from a very interesting standpoint: I had my first brain injury nine years prior and had experienced a concussion again in April of 2017. What I learned was, not a thing has changed in terms of what happens when you go to an emergency room with a head injury.

Even after nine years of increased awareness, it could have been 2008 all over again. My  diagnosis was slow, multiple doctors were unfamiliar with symptoms and none took them seriously.  My analysis of our healthcare system failure ended at the emergency room doors when I exited and returned to work two weeks later.

Brain injury action

It is said that once you have had one head injury, you are likely to be susceptible to another, and surprise, I had another concussion in September 2017.  I bent over to get something I had dropped on the floor at work and hit my head on the edge of a desk.  Depth perception issues were apart of my original injury so this isn’t too shocking. Based on my last experience, I skipped the whole emergency room circus, I knew the drill at this point and wasn’t showing any signs of a serious head injury such as vomiting or loss of consciousness.

I thought I had recovered from my head injury until I started experiencing, by far, the oddest and unfamiliar brain injury symptoms I’ve ever had. Between the rapid blinking eyes, stiff arms and shaking, it looked like I was having seizures yet all of my tests for epilepsy were normal. Fortunately, I found a great neurologist who has been successfully treating these symptoms through medication but it was an uphill battle to get to him and to treatment.

Last year, all I wanted was for the medical profession to put brain injury awareness into action. After my latest brain injury, I’ve seen them in action and it isn’t pretty. This wasn’t the action I was hoping for and isn’t what I need as a person with a brain injury.

In the past six months, I have had doctors tell me the type of brain injury I had ten years ago was impossible with no proof otherwise, attempt to diagnose me with mental health issues and not consider my pretty significant brain injury as a factor related to my current health issues.

I want the medical profession to take a pause and really take the time to learn about traumatic brain injuries and educate themselves beyond the symptoms we commonly associate with these

I’ve sat through four hour long appointments where I was taken through every detail of all four head injuries I’ve had and questioned about every decision I have ever made. It felt like I was on trial as a victim of a crime being cross examined by a defence attorney.  If I couldn’t remember something, I was questioned why that was. Maybe it’s the brain injury? I hear those could cause memory issues but just a guess.

Last year, all I wanted was action. This year, I want a pause. I want the medical profession to take a pause and really take the time to learn about traumatic brain injuries and educate themselves beyond the symptoms we commonly associate with these injuries. Doctors need to have a more comprehensive understanding of symptoms that go further than what they read in a concussion pamphlet if they are going to treat them.

When I acquired my brain injuries, I had to open Google and crack open some books to get the information I needed. People with brain injuries don’t have time for the medical profession to take a pause so better crack open that textbook.

PHOTO: Annie Spratt via LifeofPix.com


Alyson is 26-years-old and acquired her first brain injury ten 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 or on The Mighty 

What I learned from having a stroke at the age of 40

BY: JANET CRAIG

Although I usually post recipes I thought June being Brain Injury Awareness Month, I would talk about how I got here.

Back in 1991, when I was just 40-years-old (yes, you can do the math), I suffered a massive brain aneurysm. I am now turning 67 and even now when I speak to stroke survivors, I still get emotional. I was a healthy ski instructor, never smoked, did not take birth control nor had high blood pressure. I was bodybuilding with heavy weights and teaching skiing at least twice a week. So the bonus was, I was in great shape.

Having at stroke at 40

What I did not realize was that my mother had the same type of stroke at 37-years-old. Being Irish, she kept talking about the time she had the ‘spell’. My sister also had a TIA, a mini stroke, at 42 so definitely we were predisposed. This is another contributory factor, the hereditary card.

For the two months prior to my stroke I worked in a new job that I was struggling with that included a lot of travelling, driving and working all kinds of hours. I was single and dating so probably exceeding the number of drinks I should be having. I had a constant migraine, which sometimes I would think that I was just tired and I would ‘catch up’ on the weekend. I never consulted with a physician and later on, when I returned to work, realized I was self medicating.

Easter weekend I was teaching skiing at Mont Tremblant and had a migraine so severe I was vomiting throughout the night. In the morning I felt so tired and still nauseous. I tell people later the sensation of trying to move and I felt like I was literally was underwater.

Everything was an effort and my limbs wouldn’t respond. I finally made it to the chairlift but when I sat back, my head felt like it exploded. Fortunately for me the staff there are trained EMS services so got me into an ambulance where I was rushed into Montreal Neurological Institute, a leading research facility where I was diagnosed with having a  stroke and treated quickly. That is the only reason I survived.

In hindsight, all the signs were there but like most people, particularly women, I chose to ignore them.

In hindsight all the signs were there, but like most people, particularly women, I chose to ignore them - Janet Craig

I thought I was overtired, stressed from work and lack of sleep. Well of course I was. Not realizing that expression, stress kills, is actually true! What I did learn, the hard way, is to know your own body and be kind to yourself.

Be aware of the risk factors: oral contraceptives, smoking, obesity, high blood pressure, family history, high alcohol use and stress. Most women have very high expectations of ourselves and even though they are exhausted think that they will “catch up” on the weekend. Well you know the drill, you have to be the driver, the cook, the therapist, model wife, and housekeeper and lo and behold the weekend flew by and you are still tired!

Now women have more strokes than men and heart disease in general is hard to diagnose in women we have totally different systems than men. The prognosis is much better for recovery with new drugs available, more research and 10 centres for Stroke Prevention in Ontario.


After suffering a stroke at the age of 40, Janet left the corporate world to open a personal chef business, Satisfied Soul Inc. Now retired, she continues to enjoy her passions of cooking, creating and teaching people how to eat properly. 

Dear Brain Injury,

BY: MARK KONING

Dear Brain Injury,

Where did you come from? I never asked for you. You snuck into my head and caused a great deal of damage when I was a young boy, defenceless to your attack. You tried your best with your seizures and placing me in a coma. You robbed me of memories, physical strength, speech, and understanding. You made me feel trapped.

You tried to pull me into the abyss, but I would not go. I would not surrender.

With all that you stripped of me, I somehow made it back.

Photo of a journal: Secrets of a Brain Injury Survivor
PHOTO: MARK KONING

Maybe it was the love of my mom and dad, or my little sister who wanted her big brother back. Maybe it was my friends who wrote me cards and drew me pictures while I was lying there, motionless. Maybe it was something you just could never quite take away; my heart and my soul. My character.

Somehow you managed to shield yourself from my awareness and understanding. You did this for quite some time. And while I knew something wasn’t right, I just didn’t know.

I want you to know that despite trying as hard as I did and always, sometimes blindly, moving forward, you still made life growing up, difficult. Challenging. Torture.

But I kept moving.

I never wanted you.

But I kept moving.

People didn’t and still don’t, understand. I don’t necessarily understand.

Dear Brain Injury, when you knock me down I get back up. I will ALWAYS get back up. - Mark Koning Person wearing a grey hoodie, from the back, looking at the oceanBut I keep moving.

You are an unwanted guest, still lingering after all of these years. Hiding in the shadows like a monster. In my weakest moments, or sometimes when I’m just not paying enough attention, you unleash your poison. You bring about the pain, the fatigue, the frustration and the tears.

It is hard for me to know that others don’t see my unwanted guest. It is hard for me to know that you refuse to leave. But despite these things, despite how tired and angry I get, I know. I am the strong one, you are the weak. This is my path; and in a weird and strange way, you are the one who is now trapped.

Because I realized something that I don’t think you ever intended; it is NOT the end. I am a Survivor. Not just of the initial impact, of my time in the hospital, but every day. I survive; I thrive; I learn; I grow. And when you knock me down, I get back up. I will ALWAYS get back up.

Truly, NOT yours,

Mark


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

Unmasking new arrivals

BY:  SHANNON SCHILLING

Dedicated quality poured out upon the elegantly displayed array of expressiveness, and groups of brain injury confidants cast their talent in raw form.

Participant Chris paints his mask for unmasking brain injury
PHOTO: SHANNON SCHILLING

Picturesque participation mastered itself along this year’s province-wide event: Unmasking Brain Injury. In Toronto, four sessions, over two months, that were available for participants to attend at the CHIRS head office on Yonge Street, Toronto. The third day on April 7, 2018, from 1-4 p.m.: that afternoon I attended with my husband (pictured above).

Along with survivors and their partnerships, the CHIRS staff welcomed an incredible show of artistic achievement. Clients’ feelings were captured inside and out, with primary colours envisioning an individuality to others.

It was an event not to be missed, with collaboration representing members from both CHIRS and BIST on all four afternoons it was available. The Ontario Brain Injury Association (OBIA) brought the event to the attention of brain injury associations across the province to share in the experience.

The movement began in North Carolina in the United States and has internationally gained attention and participation worldwide.

Unmasking Brain Injury

Anticipating Brain Injury Awareness Month up and coming in June, each mask unfolds a journey contemplating the struggle and eventual acceptance of complete enlightenment. It was not a requirement, but thoughtful insight may have assisted in the creation of the fulfillment of property.

BIST Communications and Support Coordinator Meri Perra expressed to me how she was very humbled by the experience, “I had a huge respect for the artists involved and the project as a whole.”

What an uplifting afternoon!

It’s hard to believe that the mind has so much instinctive awareness; and what we come to believe with our eyes, is carried around as thoughts inside. I need my brother right now, so he can ask his machine, “Alexa, who first invented art?”

Of course, it is the expression of art that is not able to be contained in a simple answer. In all relativity, it is something that everyone needs to discover within themselves first to unmask its glow.

See the Masks on display at 9 Bars Coffee,  June 1 – 14

9 Bars is located at 46 St. Clair Ave East, Mon – Fri, 7:30 – 6 p.m.


 

 Shannon Schilling has recently had a baby girl, Annabelle, and lives in Oakville with her fiance, Christopher Uy. This summer she is able to attend the University of Toronto for a single course as well as acknowledging the juxtaposition of responsibilities at home. She owes enormous gratitude to the considerate help from her family.

April 2018 Community Meeting Recap: Alternative Treatments to Heal a Brain Injury

BY: JULIA RENAUD

Spring has finally sprung which has hopefully brought you some pep in your step or zeal in your wheels to feel better during this chilly year! Bringing some extra encouragement to April’s BIST Community Meeting and to shed some light on alternative treatments that he used to heal his brain and body, was teacher, author, motivational speaker, and brain injury survivor, Anthony Aquan-Assee.

Anthony Aquan-Assee holds his book Rethink, Redo, Rewired in front of the BIST Office

Anthony’s Story

Anthony began by telling the harrowing story of his first brain injury. In 1997, Anthony was a middle school teacher and coach of the school football team. He was excited about his team qualifying for the city finals and was anxious to get to football practice to prepare them for their upcoming big game. On his ride to practice, Anthony, an avid motorcycle rider, was struck by a car, sending him and his motorcycle flying. This landed Anthony at the beginning of a long road to recovery.

The paramedics arrived at the scene of the accident to find Anthony unconscious and in a very grave state. He was then airlifted to St. Michael’s Hospital, where he would require numerous extensive surgeries, including: neurosurgery, heart, lung, general, vascular, knee, throat, and plastic surgery.

It was an emotional and trying time for his family and friends who were uncertain if Anthony would ever wake up from the coma that had kept him unresponsive for two weeks, and if he did, what his quality of life would be post-injury. His doctors were worried that Anthony could remain in a vegetative state for the rest of his life.

 Start doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.
Quote included in Anthony’s latest book, Rethink Redo Rewired

He started with opening his eyelids, and progressed from there, giving himself and his family hope with every gain, no matter how small. Anthony graduated to a rehabilitation centre where he worked tirelessly to regain control of his body and mind. Eventually, Anthony was able to return to work as a school teacher, but his brush with brain injury didn’t end there.

Sixteen years later, Anthony was struck in the head by a malfunctioning automatic gate which left him with a concussion. Fatigue, dizziness, brain fog, memory loss, and sleep problems were only a few of the symptoms that he dealt with on a daily basis. Unfortunately, these symptoms persisted bringing with them anxiety and frustration. When his doctors prescribed “drugs, drugs, and more drugs” to help, Anthony began to question whether there was a better method to spur his recovery.

Alternative Treatments Anthony Found Effective

*From the top, Anthony stressed that while these treatments worked for him, each person is different; therefore, everyone’s experience is different. Prior to trying any of the following alternative modalities, he encourages you to discuss any treatments that you are considering with your doctor.*

These techniques are described in more detail in Anthony’s fourth book, Rethink, Redo, Rewired: Using Alternative Treatments to Heal a Brain Injury

Anthony realized over the course of his recovery that, for him, the prescribed medications were only acting as a bandage solution rather than getting to the root cause of the problem. He disliked being on the same medications as he had been on previously, after his first brain injury, and felt that there must be a better way.

This is when he turned his attention to alternative strategies and treatments, which, as he would learn, had the power to get to the root cause of the problem rather than masking it. Furthermore, alternative strategies “provided the necessary conditions for the body to heal itself”, and, as an added bonus, they came with no side effects!

The following is a list of techniques that Anthony found effective in his recovery that he thought might be helpful to share:

  • Neurofeedback
  • Laser Therapy
  • Kangen Water

Fun, Brain-Training Resources

For those of you dealing with a brain injury and looking for a way to train your brain, Anthony has included links to a bunch of online activities and games ranging from math, to art, to optical illusions on his website.

Next Community Meeting:
Wednesday, May 30th 6 – 8 p.m.
TOPIC: Chair Yoga with Occupational Therapist & Yoga Instructor, Kristina Borho 

Everyone is welcome!


 Julia Renaud is a very talkative ABI survivor with a passion for learning new things, trying new activities, and meeting new people – all of which have led her to writing this column. When not chatting someone’s ear off, Julia can be found outside walking her dog while occasionally talking to him, of course!