By Ruth Wilcock, Executive Director, OBIA

In Ontario alone there are close to half a million people living with a brain injury, with 18,000 new cases added every year. Acquired brain injury (ABI) is 15 times more common than spinal cord injury, 30 times more common that breast cancer and 400 times more common than HIV/AIDS. The numbers are truly staggering; however awareness about brain injury and its life-long effects on survivors remain a mystery to most of the general public. In the past couple of years, the heightened media attention on sports concussions has at least brought some awareness to the matter. However, there is still much work to be done when it comes to enhancing awareness and understanding of ABI. One of the ways in which the Ontario Brain Injury Association (OBIA) is responding to this need is through the newly released OBIA Impact Report.

The 2012 OBIA Impact Report provides a statistical snapshot of ABI and its effects on survivors and caregivers. It is a culmination of research that was collected through the Ontario Brain Injury Survey from nearly 600 ABI survivors and 150 caregivers across Ontario. The 136-page Impact Report delivers a clear picture of the symptoms and long-term consequences of ABI. Moreover, the report provides an overview of relevant statistical information including how ABI’s in Ontario are sustained; issues related to the recovery process and the impact on daily living. Additionally, the OBIA Impact Report takes into account the personal perspective of caregivers.

In order to support people living with ABI, it is imperative that we have a strong understanding of the many challenges that are associated with it. One of the goals of the OBIA Impact Report is to provide relevant research data to better inform health care policy makers, Local Health Integrated Networks (LHINS), insurers and researchers who are examining ways in which people living with a brain injury can be better served. Additionally, the report was created with the goal of bringing research to life in a dynamic way in order to appeal to a larger group of diverse audiences and stakeholders.

In order to support people living with ABI, it is imperative that we have a strong understanding of the many challenges that are associated with it.

I would like to share with you a few of the findings from the OBIA Impact Report:

• 15% of respondents indicated that it took longer than 6 months to learn of their brain injury, 4%of which stated it being more than 5 years.
• More than 75% have trouble with depression and/or anxiety.
• More than 90% have trouble with concentration, making decisions and memory.
• Complications of brain injury may include problems with: Mood Swings 76%, Dizziness, 71%, Vision 58%, Hearing Problems 45%, Seizures 22%.

The findings above bring awareness to some of the challenges and consequences relating to brain injuries. This study was made possible through the willingness of survivors and their caregivers, who participated in the Ontario Brain Injury Survey. I want to thank each of the individuals who were willing to share their very personal journeys with us in order to create a greater awareness and understanding of the issues faced by persons impacted by ABI. I also want to express appreciation to the Ontario Neurotrauma Foundation for the support and funding of the survey development and data analysis. The OBIA Impact Report is available in hard copy and also on OBIA’s website www.obia.ca.

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Steve’s story

The year 2007 was like a rollercoaster for my family. We celebrated New Years with friends and family in Punta Cana, DR. There was fantastic entertainment, fireworks, and the mood was joyful, happy, and full of celebration. Being with my family and closest friends made this the trip of a lifetime. I knew 2007 was going to be a year I would never forget.

The next few months for us passed quickly. My son David was fifteen and was progressing through his first year in high school. He also started his first paying job working at McDonalds. My daughter Patricia was eighteen. She was just wrapping up her last year in high school. She was keeping herself busy with studying and being actively involved with the school rowing team, all the while selecting a university at which to continue her studies. She was still deciding what she wanted to take, but she had it narrowed down to English and Communications.

And yet, people still don’t wear proper protection and are too careless! In the early 70s to the early 90s I had three jobs. I worked at the Department of Defence, I was a RN and RPN, was a caregiver to my mom and I also did work as an administrative assistant for Thalidomide Association in London, ON.

Our home was located in a quiet residential area in West St. Catharines. I worked as the Director of Information and Communication Technologies at Mount Sinai Hospital in downtown Toronto. I had a staff of approximately 75 members. I commuted by bus to Toronto on a daily basis, which had me at my desk enjoying a coffee each morning by 7 a.m. Coming home, I would arrive by 7 p.m., which made for a long day. The morning of June 6, 2007, I woke up and went through my morning ritual of getting ready. I woke my wife, Susan, for my ride to the bus terminal. I took our family pet, Buddy, a beautiful yellow lab, out for a quick morning walk. Buddy was one of my best friends, when I was home we were inseparable. He could run free in the front yard and I didn’t need to worry about him running off. We headed off to the bus terminal making our routine stop at Tim Hortons for a coffee and Buddy’s timbit; he had the staff wrapped around his paw! I arrived at the bus terminal, went to board the bus and realized I had forgotten my wallet at home. The bus driver knew me and that I had a monthly pass so let me on the bus anyway.

This day was not unlike any other day at work. I was in meetings from the time I arrived at work until the time I left that day. I walked out the front door with a good friend and colleague, Mike. We had some outstanding business left from those meetings and were chatting about our plans for the next day. We walked up University Avenue and split up at Edward Street where I turned, said “see you later”, and continued walking down Edward Street. At Chestnut Street a bus made a left hand turn hitting me while I was crossing the street at the crosswalk. The bus continued moving, running over the lower part of my body and didn’t stop until a witness caught his attention. When he finally stopped, the driver stepped off the bus, chatted with the witness and according to the police report, looked back at me and said, “Oh I better move the bus.” His rear tire was parked on top of me. I have no recollection of these events, or those of the next several weeks which I spent drifting in and out of consciousness.

Not having a wallet caused a couple of problems for me when I arrived at St. Michaels Hospital. I still had my Mount Sinai name badge on, so they knew my name and looked up Steve Noyes in their computer. They found a Steve Noyes, so they registered me under that name; however, they found the wrong Steve Noyes, I was registered as a sixty-eight year old man; I was only forty three. Not knowing how to reach my next of kin, the hospital called Mount Sinai and reached a close colleague who was able to get the information needed to contact my wife. Back at home, my wife received a call from the Toronto Police advising her that I had received a bump on the head and she should come to the hospital. My son was working and my daughter was still at school so my wife quickly headed off to Toronto to pick me up. When she arrived at the hospital, she was greeted by Officer Orchard who immediately apologized for being so unclear on the phone. He told her he didn’t want her to drive while upset, and possibly get into an accident on the way there. The doctors met with my wife to fill her in and told her how serious my injuries were. They told her that they would be surprised if I made it to the weekend. That first evening, my friend Mike, my boss and the President and CEO of Mount Sinai all came to the hospital to see me and support Susan. Once Susan knew the extent of my injuries, she called some close friends who notified our children.

It was the end of June before I next remembered anything, I call this my wakeup time. I guess I had been awake before this, but I was not myself. I was doing some really strange things, like calling my mother names and telling her to leave. I am very close with my mother, so this was very out of character for me. The first thing I remember after this wake up is wondering if I had missed my daughter’s wedding. One of my most vivid thoughts during the initial few weeks of my injuries was that I had to get better so I would be around to walk my daughter down the aisle. I had not missed her wedding, she wasn’t even engaged but I did miss her high school graduation. It was hard for me to learn I had missed such an important event in her life. I spent another few months at St. Michaels recovering and waiting for a bed in rehab. In September, I was transferred to the Chedoke in-patient unit for rehab. The staff were amazing, and never let me make excuses. Instead, I was always doing something to rehabilitate my mind and body. I was at Chedoke for three months before I went home, with the added support of outpatient therapy. When I arrived home that first day, I was greeted at the door by Buddy, who did something he had never done before; he jumped up on me, put his paws on my shoulders and licked me on the face. Almost as if to say, “Daddy where have you been, I’ve missed you.”

After a few months at home, my wife, family and friends started to notice behaviour traits that just weren’t typical of the old Steve. These included severe depression, excessive spending and mood swings. I was readmitted to inpatient psychiatric care for behavioural and medication assessment. After a few months of evaluation they had a good handle on my medications and sent me back home to the care of my wife and my outpatient team. There was also a new member added to my team, my neuropsychologist, Dr. Sherrie Bieman- Copland, aka Dr. B-C. As I was learning to live and cope with these major life changes, so was my family. My wife was learning to live as care-giver, my daughter had to learn to behave more like a parent than a daughter, always having to correct me or point me in the right direction, and my son was just lost. We knew he was struggling but had no idea how badly. One day my wife and I were at an appointment at McMaster and I received a text message from my son that said, “I love you”. That’s all it said. I received no responses to any of my follow up queries. Alarmed, my wife and I headed home to discover that David had been taken to hospital after taking a bottle of my sleeping pills. Fortunately, he had called friends after taking them and I will always be grateful to those friends and paramedics who acted quickly and saved his life.

This was the lowest point for me. Until then I was focused on how brain injury had caused so many changes in my life, but now I was seeing how it had affected everyone around me. The thing about change is that it is up to the person to decide how to respond to it. I was depressed, angry and doing lots of things that I thought would get me back in control of my life, but weren’t working. I needed to work with my injury rather than fight against it. Besides the severe head and brain injuries I had sustained, the most compelling long term injury I faced was severe vision loss. About a year after I came home my Buddy died suddenly. I didn’t think I’d ever get another dog, but Dr. B-C helped me as I applied and received a service dog named Tonka. Tonka is my best friend and gets me safely from point A to point B.

With Tonka, my life at home has changed. I’ve found independence, I have gained some much needed socialization skills as everyone wants to stop and talk to me and Tonka when we are out. Lots of good things were happening, but I was still bored. My injury hugely affected my initiation, when it was just me and Tonka nothing happened. I shocked Dr. B-C when I was actually asking for rehab support again. It was around this time she helped me bring on a Personal Assistant to work with me. Kimberly is the kick in the butt that I needed. People say old habits are hard to break, not with Kimberly around they are not! Boredom? What boredom!

The most important change for me that has allowed me to use and test a great number of my skills which I relied on during my time at Mount Sinai, was and continues to be, my volunteer position at OBIA. I serve as “Steve, the computer guy” in the office. I am there a few days a week and have recently upgraded all of the computers in the office, 11 to be exact, to new technology running the latest Microsoft software. I provide daily maintenance and regular troubleshooting for the staff in the office.

I haven’t given up on my dream of being able to work again. Getting back to work was all I wanted for the first couple of years after my injury. Imagine, I even tried to flag a cab in my hospital gown to go back to work at Mount Sinai while I was still an inpatient at St. Michael’s hospital. My work at OBIA has given me something meaningful to do with my skills and my new found free time, and who knows what might be next for me. It is under the care of my wonderful psychologist Dr. B-C that my life has turned around and is heading towards the old normal. I can never thank her enough for the significant changes she has made in me, and more importantly, in the lives of our entire family, in helping us cope with the results of these injuries. I look forward to meeting with her each week for my “attitude adjustment” as she calls it.

I am so thankful for my family for never giving up on me, for my wife who is my best friend and has stood by me even through the most difficult times. I am thankful for my son, who has grown to be an amazing young man and is currently studying to be a Paramedic, so he can “pay it forward” for the help he received. Finally, I am thankful not only for my daughter’s support through these past few years, but I am most thankful that I am here and looking forward to walking her down the aisle at her wedding next summer! 

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By Ruth Wilcock, Executive Director, OBIA

When a person sustains a brain injury, the changes that this brings to one’s life can be extremely devastating. For some, during the first few hours, days and even weeks following the injury they are battling for their very life. When this battle has been won, the long road of recovery and rehabilitation begins. For each survivor the journey is unique and has its own set of challenges. However, in speaking with many different survivors, along with their diversities, a common thread of loss emerges. Often survivors of brain injury lose a large part of what made them who they were, leaving them feeling alone and isolated. For others it is loss of their job, their friends and sometimes even family. The devastation of the injury leaves them struggling to regain who they once were, or grappling with finding out whom they might become. Each day brings with it new and different challenges.

As I have listened to survivors share their stories with me I feel great empathy when I hear of their losses, impediments and hardships that they have encountered. However, I also feel a great sense of admiration as I listen to how they have met each and every one of these challenges. I never take for granted the amount of dedication, commitment and fortitude that is needed in order for survivors to meet the challenges that the devastation of the injury has brought about. I continue to be amazed at the amount of resiliency that a person is capable of, and one of the core elements to resiliency is the ability to adapt to change. Whether one is a survivor, family member or professional, each person has parts to them that, at times, can be resistant to change. Change involves exploring and navigating the terrain of the unknown. It takes one out of their comfort zone and exposes vulnerabilities that one may be resistant to confront. However, if one can navigate through the fears and uncertainties of change, this enables one to be empowered.

Change can be devastating and challenging, but when the right tools are in place, change can be a catalyst for empowerment enabling one to move forward and reclaim their lives. The power of the resiliency of the human spirit and its ability to adapt to change is often echoed through the many survivor stories that have been published in the OBIA Review.

I want to give a special thank you to the survivors who are willing to share their very personal journeys with us and for the privilege that we have in celebrating their heartaches but also their many milestones and successes.

I also want to mention that change not only happens to individuals but organizations as well. At OBIA, we are in the midst of experiencing a change. After 24 years of dedicated service Dianne Radunsky, who worked in support services, has retired from her position.

In many ways Dianne was a pioneer in developing our support services department. Dianne has been able to advocate on the behalf of hundreds of survivors and family members whose lives have been touched by brain injury.

Dianne always came from a place of compassion, justice and fierce dedication to getting the best services that were available for the clients she served.

On behalf of the board of directors,staff and volunteers. I want to give our heartfelt thanks to Dianne for her commitment to OBIA and all that she has accomplished in her role.

We wish her all the best in her retirement.

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