Brain injury in the family: then and now

BY: MARK KONING

In 1978, when I was six years of age, I was admitted to the hospital with a viral brain infection, known as encephalitis. Encephalitis is inflammation of the brain, caused either by an infection invading the brain (infectious) or through the immune system attacking the brain in error (post-infectious or autoimmune encephalitis).

Mark Koning and his mother
Mark Koning and his mother

It was a seizure that alerted my parents to the fact that we needed to take a trip to the hospital, and then another seizure which told the doctors I needed to be admitted. After this, I draw a few blanks. There were many tests, I was in a coma for two weeks, and I received rehabilitation during the course of my stay at this medical facility that acted as my home for the following months. While there was some therapy that I continued to endure for another little bit after I went home, that was it, I was done.

Fast forward 23 years later to 2001 when my mom had an accident and fell, and I see a world of change. After my mom was placed onto a gurney in the hospital, it took only a matter of hours to diagnose the subdermal hematoma/blood clot that my mom had suffered. They first had looked into whether or not it was a stroke which had caused the fall, followed by tests for an aneurism. Turns out it was just a plain old, bad, fall.

My mom went into surgery that night and found herself sleeping in a coma for the next month. When she awoke, it took her quite a while to find the mobility to physically move her limbs, and it took even longer for her to find her voice. A physical therapist helped with her movement, a speech therapist helped with her aphasia and a cognitive therapist helped with everything else. The nurses were great and the doctors took good care to explain things that my sister and I needed to know. My mom was prescribed the appropriate medications to ease any discomforts. Therapy followed us home and soon the Community Care Access Centre (CCAC) got my mom, among other services, a personal support worker.

Currently my mom attends an aphasia program once a week, an ABI program once a week and has a March of Dimes rehabilitation worker come out once a week. She also involves herself in many social activities March of Dimes offers. And her doctors, even though different from years ago in the hospital, treat her very well.

Mark Koning
MARK KONING HOLDS A COPY OF HIS LATEST BOOK, CHALLENGING BARRIERS AND WALKING THE PATH; PHOTO: MERI PERRA

There is quite a bit of difference between our injuries. I was pretty young when I acquired my brain injury,  while my mom was just approaching her 60th birthday when she fell. (Though she would say 49  and holding.) And as much as I don’t want to seem ungrateful for the care I received, I can’t believe the tremendous difference compared to what my mother has access to compared to what I had, back in 1978.

Times have changed and regardless of my occasional questioning about my past, I have no complaints about change when it is for the better.

The one main difference between my mom’s accident and mine is traumatic brain injury (TBI)  versus acquired brain injury (ABI). My mom fell and suffered a TBI where as I was struck with a viral infection from within; no trauma, no physically-seen damage, no bleeding from the head. Does make a difference? I wonder.

To find out more about my life growing up you can do so by reading my book Challenging Barriers & Walking the Path, found here: http://www.markkoning.com/ChallengingBarriers.html


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.

 

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Awareness month: A brain injury does not discriminate

Imants Leitis is the Founder of BRAININJURYFORUM.com and a brain injury advocate. He has been a caregiver to two severe traumatic brain injury (TBI) and orthopedic survivors since 1997 when a car mounted the sidewalk and ran down his family, leaving one deceased at the scene and two fighting for their lives. His article on the injury that “does not discriminate” looks at the impact acquired brain injury (ABI) can have on the loved ones of a brain injury survivor.

We hear about brain injuries occurring in sports, from motor vehicle accidents and other recreational activities; however few have stopped to imagine that “A Brain Injury Does Not Discriminate” and that one could happen to anyone or someone we love.

Braininjuryforum.com's BIAM poster
BRAININJURYFORUM.com’s BIAM poster

A brain injury changes a family’s functionality, its balance, dynamic, harmony and landscape. When it comes to brain injury, there is a loss. Although you may not have lost anyone in the physical sense, in many scenarios families have lost the person they once knew. Losing someone you care for is difficult and painful. However, when it comes to brain injury, families live with a reminder of that loss each day, which can make it even more difficult for some. Support for families who live with, care for, and provide structure and support to a survivor is an area that is overlooked and needing more attention across the country.

Traumatic Brain Injury (TBI) is responsible for more trauma deaths than to any other region of the body, accounting for 50 per cent or more of all trauma deaths in Canada. Brain Injury is the number one killer and disabler of people under the age of 44. Statistics further indicate that incidences are two times greater within the male population.  The effects of a brain injury on a person’s health and well-being vary significantly and are just beginning to be better understood. The individual effects of a traumatic brain injury can be difficult to predict but it is clear that traumatic brain injuries can have a devastating impact on the quality of life and mind of survivors and family members.

Here are a few points to consider:

• Within the next hour, six Canadians will suffer a brain injury

• An estimated 1.3 million Canadians are living with an acquired brain injury right now

• One in 10 people will know someone who will suffer a brain injury this year

• Brain injuries are the number one killer and disabler of people under the age of 44

• More than 18,000 Ontarians will suffer a brain injury this year

• One in 5 sports-related injuries are head injuries

Statistics above are from the O.B.I.A. website.

When we hear those impactful and crushing words that someone we love has sustained a TBI; we are shocked, hoping for the best for the individual. Those words alone are catastrophic and will cut deep into ones smoothly-shaped world and life. However, after life-saving medical intervention, this is only the beginning of a long process of recovery and a journey that can take a lifetime to navigate and manage. The next leg of one’s recovery journey is difficult and cannot be done alone. Survivors need and require a variation and/or levels of support(s) and systems in place to help them gradually and continually move forward.

View the video: Some of the Many Sides and Challenges of Acquired Brain Injury

No two brain injuries are alike and no two recoveries will be either. Typically, families are thrust abruptly into the care-giving mode and support roles with little knowledge, training and familiarity of what exactly a brain injury can mean for them and their loved one. There is so much to learn and understand and little time to do it. Family members assume much of the responsibility for supporting the survivor after the injury. There is not only the initial loss (injury), there is the loss of the person you once knew and a lot of feelings that have to be worked through while trying to be strong for your loved one.  I suggest you find a very close friend for you to confide in, bounce thoughts off of and to be your support. There is no manual that tells you exactly how to care and/or what to do or not to do. There are no shortcuts, no easy fixes and/or magic solutions. Brain injury recovery takes time and a lot of personal energy to manage as a caregiver.

I had no clue of what awaited me and my family after the accident, and once my mother and nephew were discharged home to begin their next leg of recovery. Here are a few points that I would like to share with anyone facing this predicament today or in the future that may be helpful to moving forward and making the best of a most difficult situation:

Learn about their brain injury specifics; don’t be afraid to ask questions; never compare one survivor’s recovery to another; have patience; support the benefits of providing a survivor with structure; put yourself in their shoes for a reality check and find a way to move forward; be mindful that a brain injury does not heal like a broken bone.

Most importantly, listen and talk with your loved one (survivor) as they can be of great help with recovery and where possible should be included in decisions and choices that will affect them. Gradually and incrementally support and promote their independence where possible and as best as possible.

Be realistic, but never give up as some survivors have and can plateau for a while before more progress is noticed again. Care giving should be a labour of love; however it sometimes comes with a lot of pain, frustration, dark days and challenging periods and tears attached. As a caregiver, remember this phrase that I have coined in my upcoming book, Me Time, which means finding a little time periodically for you so that you don’t burn out, or lose your own identity and quality of life. For those who truly give their all, it is far too easy to forget yourself and lose sight of taking care of yourself.

BRAININJURYFORUM.com encourages everyone to become more understanding of this invisible and often disabling injury. I additionally encourage children, parents and all others to help prevent this preventable injury this summer and all-year round by wearing protective headgear whenever engaging in sports and various other recreational activities. I encourage all drivers to be alert while sharing the roadways, do not drink and drive and please do not text while driving.

Imants G. Leitis

igl@braininjuryforum.com