How we went on a real family vacation after my son’s brain injury

BY: BARB KUSTEC

This is us last summer, when our family decided to drive to Canada’s East Coast provinces and take a real family vacation.

vacation
Our vacation began when headed out late one afternoon in our rented, and very comfortable, RV. Leaving late was our first mistake. Our plan was to get to the Maritimes fast (we wanted to get through Quebec before stopping for the night). That was our second mistake. Then we realized we had forgotten the sleeping pills and other brain injury-related medicine for my son at home. That was our third mistake – a big one.

We learned that to survive on our vacation, we must be better organized. We had to call ahead for hotels, and eat before hitting the road. We needed to get into the habit of allowing for extra time, for everything and anything that could come up. Getting up in the mornings takes longer for the person with the ABI, and changes in environment and routine are harder for them to deal with. Once we slowed down and got organized, the trip went much better.

vacation
As soon as we reached the East Coast, it was smooth sailing. The slower, calmer pace was perfect for our family. The landscape is beautiful, and our family relaxed and began to have a great time together.

We went whale watching, swimming, walked on the ocean floor, did Peggy’s Cove and visited Anne of Green Gables. We took lots of pictures, and it was amazing to see our son take everything in. It was wonderful to see all of us, my husband and two daugthers, relax.

I totally recommend vacation for families who are living with brain injury – especially ones where you’re trapped together in a comfortable RV. The bonding and closeness are moments that will last a lifetime. There were periods of chaos, do not get me wrong, but even those add to the story of us. (And, after the fact, they are funny to remember – like when my husband didn’t take the time to learn where the gas tank was, and had to figure it out when the RV was almost running on empty. After about an hour, the gas tank was found by a carload of young men who Googled it, and it turns out it was inside the driver’s door. My prayers were answered once again!)

vacation
Did the brain injury change our vacation? Absolutely. However, the rewards were greater than the challenges. Thank God we still have our son and brother. Who could ask for more than that?

Barb Kustec is the mother of three – Christopher, age 23; Cassandra, age 15 and Samantha, age 12. She is married to her husband, Danny. This is her second article for Brain Injury Blog TO.

Can the brain repair itself?

BY: SOPHIA VOUMAKIS

When I suffered my traumatic brain injury (TBI) in 2011, I believed that the cells in my brain which had been damaged were irreparable. But recent research suggests that the brain can repair itself, and that what was once damaged may be able to heal.

Before we explore the scientific evidence, we need to have a rudimentary understanding of how the brain works. Very simply, the brain is made up of two main groups of cells, neurons and glial. When these cells work together, the electrical activity they create enables us to move, think, emote, feel, remember – essentially, to live.

"Human neural stem cells (shown in red), originally reprogrammed from adult skin cells, differentiate efficiently into brain cells (shown in green), after being cultured with star-shaped cells called astrocytes." Photo credit:  Chen Lab, Penn State University via Pen State News
Human neural stem cells (red), originally reprogrammed from adult skin cells, functioning efficiently with  brain cells (green). Photo credit: Chen Lab, Penn State University via Pen State News

However when one of these cells gets damaged or dies, the result is damaged wiring and connections. If the damaged nerve is a motor neuron, then motor functioning is impaired. If the myelin cell is damaged, diseases such as Multiple Sclerosis (MS) develop.

Speaking at a TED Conference in July 2013, Dr. Siddharthan Chandran, director of the Centre for Clinical Brain Sciences, describes a case of a patient with MS whose brain scan showed myelin damage. Subsequent scans showed some repair in the area of the brain which had originally displayed damage. This repair had occurred with no medical intervention, which led Dr. Chandran to conclude that “the brain can repair itself, just not well enough.”

Dr. Chandran believes this discovery will lead to a new direction in finding therapies to treat brain disorders. Human stem cells, which can can self-renew to create new bone or liver cells, show great promise in this endeavour. Scientists hope that one day stem cells can be used to create new motor nerve or myelin cells.

In 2006, Japanese scientist Dr. Shinya Yamanaka discovered that just four ingredients can convert any adult cell into a master stem cell. This means that scientists can create a stem cell from any of us, and then make that cell relevant to our disease or injury, such as a motor neuron or a myelin cell. Yamanaka won a Nobel Prize for his work in 2012.

A recent clinical trial by Dr. Chandran, in collaboration with other scientists,  illustrates this point. Researchers took stem cells from the bone marrow of patients with MS, grew myelin cells in the lab, and then injected them back into the patients’ veins. To measure whether the intervention was successful, the scientists examined the optic nerve. The size of the optic nerve was measured before the injection of the lab grown myelin cells, three and six months post injection (patients with MS usually have vision problems). Results showed the optic nerve had stopped shrinking, which Dr. Chandran believes is the result of the injected myelin cells, which promoted the brain’s own stem cells to do their job of laying down more myelin.

TEDGlobal 2013 in Edinburgh, Scotland. June 12-15, 2013. Photo: James Duncan Davidson
TEDGlobal 2013 in Edinburgh, Scotland. June 12-15, 2013. Photo: James Duncan Davidson

In addition, scientists can now use human cells to find ways to promote and activate the stem cells, which are already in our brain, to repair damage. Dr. Chandran believes this technique could replace animal testing in the future.

Although Dr. Chandran discussed these new advances in the treatment of brain disorders such as MS and Parkinson’s, these scientific advances may have applicability to the brain injury as well. To quote Dr. Chandran, “the day we can repair the damaged brain is sooner than we think.”

Since her TBI in 2011, Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.

What my personal experience with concussion has taught me

BY: KAROLINA URBAN

Summer is here and with it comes the inevitable concern for safety and injury prevention. From organized sports such as soccer and rugby, to recreational activities such as wakeboarding, tubing, biking or your friendly match of volleyball, there is always a risk of a concussion.

Concussions are not limited to a direct hit to the head. They can also be the result of a large biomechanical force, known as a acceleration-deceleration injury, which causes the brain to move within the skull.

The rate of concussions occur in 754 per 100 000 for boys and 440 per 100 000 for girls. Nearly one-third of these injuries are the result of falls, while skating and hockey account for the greatest number of sports related concussions in Canada.

photo credit: UPEI Panthers at Saint Mary's Huskies (Nov 27 2010, Halifax NS) via photopin (license)
photo credit: UPEI Panthers at Saint Mary’s Huskies (Nov 27 2010, Halifax NS) via photopin (license)

The difficulty with assessing or recognizing a concussion is the wide range of symptoms that vary as a result of the heterogeneity of injury. These symptoms can range from being physical in nature (i.e. headaches or dizziness), to cognitive (i.e. difficulty concentrating), to behavioral (i.e. depression, anxiety) or sleep-related (i.e. difficulty falling asleep or sleeping too much.)

80  per cent of adults recover from a concussion within two weeks. For children, the recovery process tends to be slower, but despite the longer recovery period, it has been shown that most of the pediatric population does not continue to have long-term difficulties. However, around 14 per cent of the children who sustain a concussion continue to have symptoms beyond three months after injury. As a parent, guardian, coach or friend it is critical to recognize the impact of concussions, know how to prevent them and how to promote recovery.

Throughout my hockey career I always had this willingness to do whatever it took to win. In the face of injury I would shrug off the pain and continue to compete. In my second year of hockey at the University of Toronto I sustained a concussion in the last season game. From what I recall, the puck came out of a scrum in the neutral zone and the next thing I can remember is sitting on the bench feeling ‘out of it.’ My line-mate asked whether I was okay and I simply responded, “Oh yeah, lets go.”

Image via Facebook
Rowan Stringer; Image via Facebook

Luckily there were only few minutes left in the game as I continued to play. That evening I began to feel worse, more anxious, dizzy and fatigued. But as I had always done, I continued on until the next evening, I went to class, wrote an exam (which I did horribly on) and continued onto practice. As we began to do skating drills, I began to feel nauseous and dizzy and finally agreed to get an official diagnosis. Although I took this step, I quickly got cleared to play again as game one of playoffs was eight days later.

It was quite evident I was no were near ready to return to play. I missed the puck several times, my reaction times were slower, my head was hurting and I was dizzy every time I turned. To be honest I probably hurt my team more than helped. I was, however, extremely lucky to have not sustained another hit to my head. This is called ‘second impact syndrome’ where you undergo another hit to the head when you haven’t given your brain time to recover from the first injury. Impact to the brain during this vulnerable period may result in devastating consequences, such as with the recent death of high school rugby player Rowan Stringer.

If you or someone you know has sustained a concussion, there are return-to-life and play guidelines to help. The Ontario Neurotrauma Foundation has produced pediatric concussion guidelines and has information on persistent concussion symptoms. Parachute has return-to-play guidelines which are also a valuable guide for concerned parents and athletes.

These guidelines are the most up to date and based on research. However, I would like to impart some of the things I have learned throughout my career and the few concussions I have had:

  1. Remove yourself from the activity you are doing. I know this is hard but you are probably putting yourself at risk for a longer or more complicated injury. If you want to get back out there as quickly as possible and avoid more serious injuries, it is critical to stop what you are doing. 
  2. Give yourself time to rest – some of the symptoms of concussion can develop up to 24-36 hours after the injury occurred. So jumping right back into a high risk activity can put you at more risk.
  3. If something doesn’t feel good, stop. If you hurt a muscle and felt the pain when you began running you would stop, so don’t treat your brain any differently. I think this is particularly important when you are trying to get back to your life and sport. Monitoring how your brain feels when you are beginning to re-integrate yourself into all your activities is key.
  4. Be patient – For me this was the most difficult one. Some days you begin to feel better and think that you have recovered and then the next you feel worse again. This can be extremely frustrating, especially if you want to get back to school or back to what you love doing. As long as you are aware that it’s not going to be a straight forward recovery, then maybe you can lower that frustration.
  5. Rest, but don’t sleep all day. Previously it was thought that it was important to completely isolate yourself, stay in a dark room until you felt better and your symptoms were gone. However more recent research has shown that full rest can have a negative effect on brain health and recovery. After the suggested 24-hour rest period, begin to get back into what you are doing, slowly. Go for a walk or try cooking dinner, but whatever it is, make sure you’re moving in small steps.
  6. Define your priorities. One common symptom for  people is fatigue and difficulty to concentrate. If you overwhelm yourself you could hinder your recovery.
  7. This so-called ‘invisible injury’ is nothing to hide, nothing to be ashamed of and it is okay to not feel comfortable doing something that everyone else is. All that matters is taking care of your brain and you need to do whatever it takes to take the appropriate steps.

 Karolina Urban is a former University of Toronto and Canadian Women’s Hockey League player. Currently she is a PhD student at the Concussion Centre in Holland Bloorview Kids Rehab Hospital. 

How brain injury can lead to homelessness – one survivor’s story

BY:  GODFREY DUBON

My first brain injury happened when I was six-years-old.

When I was an adult, I acquired my second brain injury from a car accident. One year later, I was homeless and living in a shelter.

After my accident, I was no longer able to look after myself the same way as I had before. The hospital was more interested in healing my broken bones than looking at my brain. The law was more interested in upholding the law, and my boss at the time was more interested getting me back to work, rather than making the necessary accommodations for this to be possible.

Godfrey Dubon
Godfrey Dubon

I spent days, weeks, months and years lost without any direction. I had memory problems, a hard time keeping jobs and no friends. I started drinking more than ever, and I lost myself in the world of drugs and alcohol. I felt death would be heaven.

It is very hard to explain all details about what it’s been like to live with my brain injury. But I one detail I want to make clear: having brain injury is not a joke and being homeless makes it worse. I became sick with mental health issues and addiction. I had learning problems, problems with the law, problems holding down a job, and problems having relationships. But the biggest problem was that I did not know what was happening to me, or where I could go for help, or even how to ask for help.

Photo credit:
Photo credit: Urban Marginality and the Hyperghetto

I finally met Dr. Sylvain Roy from the Inner City Family Health Team. Through the Inner City Health Team, I was able to learn what had happened to my brain, and I began to work with a mental health counselor on improving my quality of life.

It’s been hard – keeping a place to live, staying sober and looking after myself day in and day out. On the other hand, I am trying to become a peer mentor to support other brain injury survivors. My dream is to create a community centre for people with disabilities where brain injury survivors can come together to share our wisdom and passion and volunteer if they want to.

SOURCE:
SOURCE: ST MICHAEL’S HOSPITAL

This is Godfrey Dubon’s first post on Brain Injury Blog TO.  To find out more about the Peer Community Hub project, visit their blog or Facebook page. This article also appears on www.areyouaware.ca. 

 

 

Let me tell you the one about having a brain injury …

BY: SABA RIZVI

Most people don’t understand what a brain injury is or means, especially if the person doesn’t appear to have a disability.

A brain injury is kind of like how older adults might experience memory loss, or other cognitive deficits. A lot of people share stories about loved ones going through dementia or Alzheimer’s, for example, and the impact this has on the whole family. They’re generally upset regarding the situation, but find solace in knowing that they’re too young to be experiencing something like that, and have at least the next 30 to 40 ears to live a ‘normal life’.

A brain injury is similar, except that it can happen to anyone, at any age. The effects of a brain injury range from someone appearing to absolutely ‘normal’, to someone in a coma. The person with a brain injury can have memory loss, difficulty eating, sleeping, reading, writing, and just carrying on normal activities. Most daily functions that people without brain injury take for granted, are a luxury for those living with ABI.

The other day I forgot what a selfie is, or that our phones even have a front facing camera. Today, I went through my contacts list, and I don’t remember half of the people on there. The memory comes and goes, or just goes for good, and every day is an adventure.

Living with brain injury is hard enough on its own, especially if you don’t look like you have a disability. As hard as it is now to avoid technology and overstimulation, both of which cause those with a traumatic brain injury immense difficulty, it helps to utilize technology to educate others about what is going on. The use of the ever so popular memes is a great way to spread awareness and include humour when educating about brain injuries. Others are more willing to learn slowly, and with a few laughs.

Here are two examples I have used to educate others about the symptoms of brain injury:

Screen Shot 2015-06-17 at 12.04.24 AM Screen Shot 2015-06-17 at 12.04.16 AM

6 things you should never, ever say to a brain injury survivor

BY: CELIA M

The challenges which affect persons with acquired brain injury (ABI) are not always visible. We may look exactly like you – we are stylish, and on really good days in quiet environments we can manage to stay focused.

ABI is the result of either a traumatic injury due to an accident or non-traumatic injury due to a stroke, brain tumour or substance use. Often when people hear “brain injury” the first thing that comes to their mind is intellectual disability. The truth is most people with ABI retain their intellectual abilities, but the brain injury may affect thought processing, making it difficult for a person to express themselves. The extra energy required for simple daily functions can leave our body and brain fatigued. No one day is ever the same.

http://cdn.someecards.com/someecards/usercards/MjAxMy0yOWQ1NTdmNjk4NzcxZDhi.png
Photo credit: someecards.com

While the effects of ABI and the challenges each person faces are unique, one thing we all seem to have in common is the (stupid) things people often say to us. From the perspective of someone who lives with ABI, here are six things you should never say to someone living with a brain injury:

You are lucky to be alive-3

Yes, the person may very well be “lucky” to have survived their accident, but when faced with all the challenges of the aftermath they may not see it that way. Or they themselves may be quite aware of how blessed they are to have survived and are doing their best to move forward. Some days may be easier than others. On the not-so-easy days or when someone is struggling with how blessed they are to be alive instead of saying “how lucky they are to be alive” tell them how much you admire their strength and persistence to overcome their current situation.

I WISH I DIDN'T HAVE TO GO TO WORK

 

Whenever I hear this, I shake my head and think, “Seriously you just said that!” It is often said as if I made the choice to not work. Being able to work provides one with a sense of pride and ability to provide stability and independence for the future. This privilege is often taken away from someone who is living with a brain injury. When someone is forced to stay home due to pain and exhaustion it is no holiday. So, when you feel like you need a break from your job, don’t envy the person who is forced to stay home because of their ABI. Anyone who has lost control of their income potential will tell you they would gladly give up their forced non-working status to go back to work.

 

YOU DON'T LOOK SICK

I have a brain injury, which is a hidden disability. It is not a cold or a flu. I am not going to be coughing, running a fever, have watery eyes, throwing up or blowing my nose constantly. Just getting dressed and daily personal hygiene tasks can deplete me of energy on some days, making it a challenge to do much more beyond “not looking sick”.

photo credit: Neecy Grace
photo credit: Neecy Grace

let's go do-2
Depression, fatigue, chronic pain and apathy are very common symptoms of brain injury. These feelings affect one’s mood and ability to process information, deal with pressure and handle stress. They make it harder to do everyday tasks, much less handle extra activities.

Brain injury survivors require significantly more rest than the average person, which is often mistaken for laziness. This couldn’t be further from the truth, since our drive to exceed our energy threshold results in over-stimulation, which can leave us completely depleted, leading to setbacks and sometimes manifest as physical illness.

Sometimes in the middle of a conversation (for me, especially emotionally filled ones) I need to take time out. So if someone with a brain injury tells you they need to stop while talking to you, know that they NEED TO STOP NOW! It’s not that they are trying to avoid the subject, they simply need to take a break from “all the thinking” to process the conversation. Pushing the person to continue will only result in their complete exhaustion and a possible melt-down, which may set them back from being able to continue with any further discussion on the subject (or anything else) for days or longer.

Finally, brain injury survivors often have a really hard time with a change of plans. There is a lot of thought which goes into planning a day with non-routine or extra activities. The energy it takes to mentally process a last minute change of plans can zap one’s energy, which is often mistaken for not being flexible.

let me do that fo ryou

Unless what a person is about to do is going to pose risk to themselves or others, allow them time to complete a task. Tasks that once took seconds may take minutes or longer to do. Remember we are retraining our brain, and it takes time. Jumping in and taking over the task will trigger a sense of inadequacy, reinforce loss of independence, and may be viewed as being controlled. Patience is extremely important.

 

let's go do

 

Limiting exposure to situations or environments which consist of loud areas, multiple people conversing, and excessive background noise is a coping strategy many people with ABI use to help prevent brain overload. We are not trying to be difficult or anti-social, we are just trying to avoid triggers that will over stimulate our minds and result in exhaustion. This is a survival mechanism, not a behavioural one. Stop making us feel guilty because we don’t want to attend the rock concert and come up with social activities that will not cause sensory overload.

https://juliawillbefine.files.wordpress.com/2014/06/other-people-in-my-age-group.png
Photo credit: Juliawillbefine.wordpress.com

Now that you are aware of how your words can impact someone with ABI, I hope you will choose them more carefully. And know that supportive words of encouragement go a long way in any situation.


 

Celia Missios
Celia M.

Celia is an ABI survivor who is dedicated to helping others move forward in their journey and live the life they dream of. She is the founder of the internationally read blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Soulful Relationships part of the best-selling series Adventures in Manifesting; a Peer Mentor with BIST; a regular speaker for Canadian Blood Services – Speakers Bureau; certified Life Coach, certified Law of Attraction Practitioner and currently working on her Mind Calm Meditation certification. Learn more about Celia and be inspired: visit www.HighHeeledLife.com or www.CeliaMLifeCoach.com

What does brain injury ‘awareness’ mean anyway?

By: MARK KONING

June is brain injury awareness month and the fact that a focus is being put on this acquired disability is wonderful! I think it is great to have a time frame where a lifelong injury, such as brain injury, is put forward so that it is a little more prominent in people’s minds. So that we pay a little more attention to the hardships and struggles, the success stories, the services rendered, the caregivers and the survivors. It is a time to listen to and respect one another, a time to discover and learn new things, a time to share and a time to make new and important connections.

photo credit:  Brain Injury Association of Massachusetts Blog
photo credit: Brain Injury Association of Massachusetts Blog

But I think the question is how far beyond the already existing brain injury community does any awareness go?

According to Wikipedia:

Awareness is the ability to perceive, to feel, or to be conscious of events, objects, thoughts, emotions, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something.

And there is the trouble. Do see it? Did you read it? “… [W]ithout necessarily implying understanding.”

When it comes to an issue such as brain injury, just how aware can one be without understanding? The answer, in my opinion, is that you can’t be.

So when I refer to the above ‘community’ I am referring to brain injury survivors, the dedicated caregivers, the service providers, rehab workers, therapists, etc. Unless you participate, unless you have an open mind, unless you ask questions and listen to the answers,  are you truly aware?

Just because you know of brain injury, doesn’t mean you know what brain injury is.

I have lived with a brain injury for many years and I have had people tell me that they understand ABI, but then turn around and question my challenges when it comes to keeping up a quick pace, why I have difficulties retaining certain information, or why I would require certain accommodations.

I am also a caregiver to my mom who recently acquired a brain injury. I recall a time when someone said they knew of her injury yet couldn’t understand why she needed my assistance with communicating.

Awareness is great, but it unfortunately does not mean understanding. In fairness, I suppose brain injury understanding month does not sound, or flow, as well. But that is really what it needs to be – understanding – because awareness doesn’t quite live up to what is trying to be accomplished by having this month dedicated to brain injury.

So I challenge you to ask questions, to listen, to try and empathize and to keep an open mind. Let’s grow together.

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.