Understanding my post traumatic brain injury nightmares

BY: ALYSON ROGERS

I have two recurring nightmares. In the first one, I’m on a basketball court and I am 16-years-old again. I’m playing my old point guard position. I am scared and dribbling the ball cautiously because I am not supposed to be here but my coach put me in the game. I’ve never dreamed long enough to find out if I make it through.

My [nightmares] are the manifestations of the trauma in traumatic brain injury - Alyson Rogers

In my second dream, I’m on a rollercoaster at a theme park I visited often as a kid except I’m my 26-year-old self. I know it’s not safe for me to be there and I’m scared of how I will come out at the end of the ride. In this dream as well, I never dream long enough to find out.

It’s taken me years to realize my dreams are reoccurring. I understand now they are related to the part of brain injury I don’t like to talk about: how my brain injury impacts my mental and emotional health, how the act of being injured in itself is traumatic.

After a traumatic event, it’s common to have nightmares about the specific event or the circumstances surrounding the event. My dreams make sense, they are the manifestations of the trauma in traumatic brain injury.

My initial brain injury occurred during a basketball game. In the basketball dream, I’m the same age, playing the same position and in the same gym where I acquired my injury. I have the same coach who encouraged me to play despite having a brain injury.  I know I shouldn’t be on the court and I’m afraid someone is going to hit me with their body or the ball, but part of me is happy to be there.

Despite my brain injury, I sometimes test the waters with new and old activities such as riding a bike, zip-lining and jumping rock to rock while hiking. Sometimes I do things I know I shouldn’t, such as not wearing a helmet while biking or rollerblading. Despite my willingness to test the waters and tempt fate, I would never try to go on a rollercoaster again. This is a former love that would likely cause significant damage to my brain and potentially kill me. It makes sense I have nightmares about being on rollercoasters.

After living with brain injury for ten years, I am still learning new things. This week, I learned I have recurring nightmares from the traumatic event that was my TBI.


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 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. 

CTE Diagnosis – when will it happen?

BY: RICHARD HASKELL

Chronic traumatic encephalopathy? CTE?  Say that again? To be sure, outside the medical profession, a term such as this may be daunting. It refers to a progressive and degenerative brain disease that persists over a period of years, not that much different from Alzheimer’s, Parkinson’s, or early onset dementia. It breaks down part of the brain, causing it to deteriorate and lose mass, and in so doing, affects how a person behaves and functions.

Yet unlike other types of cognitive deficiencies, scientists know the root cause of CTE: repeated head trauma. 

photo credit: 124. The UT via photopin (license)
photo credit: 124. The UT via photopin (license)

Chronic traumatic encephalopathy was originally termed dementia pugilistica or in layman’s terms, ‘punch drunk.’ It was first noted in boxers during the 1920s who suffered from impaired movement, confusion, speech problems and tremors. (Now dementia pugilistica is recognised as a variant of CTE.) CTE was first documented in medical literature in 1996, and is caused by a number of neurological changes in the brain primarily due to a buildup of an abnormal protein known as tau which serves to stabilize cellular structure in the brain’s neurons. With repeated trauma, the tau becomes defective and begins to congregate in clumps, thereby disrupting the brain’s function.

What are the Symptoms?

It would be difficult to name a contact sport today which doesn’t involve some risk of head injury. Football, hockey, rugby, boxing and even soccer are all sports where players face the possibilities of concussions which can lead to an ABI. But until a few years ago, such injuries were not taken seriously – they were considered ‘just part of the game’ – something to be expected. So what if a player got hit on the head was maybe even knocked out? The prevailing attitude was, “You’ll be fine in a day or two, so now get back on the field, the rink, or the ring and WIN!”

It wasn’t until medical practitioners , not to mention teammates, friends and family of those afflicted began to notice long-term effects such as mood swings, depression and in the worst cases, suicides, that the seriousness of head trauma began to be taken seriously. The clinical symptoms associated with CTE vary in severity, but initial signs may include the following:

  • Deterioration in attention, concentration, memory
  • Disorientation
  • Confusion
  • Dizziness
  • Headaches
  • Lack of insight
  • Poor judgment
  • Overt dementia
  • Slowed muscular movements
  • Staggered gait
  • Impeded speech
  • Tremors
  • Vertigo

Currently, medical practitioners believe there are four distinct stages of CTE. During the first stage, an individual may suffer headaches and confusion, but by the time he or she reaches stage two, there may be evidence of social instability, erratic behavior, memory loss, depression and the initial symptoms of Parkinson’s disease. The third stage includes symptoms such as executive function problems, difficulty in judgment, speech difficulties, lack of muscular control and difficulty in swallowing. In the fourth stage, full-blown dementia occurs.

Photo credit:
Photo credit: Dead Spn

A New Breakthrough

Until a couple of years ago, the only way of testing for CTE was though conducting a postmortem on the brains of the deceased using a microscope to analyze cells.

Nevertheless, a study early in 2013 seems to have finally opened the door to diagnosing CTE in living test subjects. It was headed by Dr. Gary W. Small, an author and professor of psychiatry and biobehavioral sciences at UCLA and funded by a $100,000 grant from the Brain Injury Research Institute (BIRA).This non-profit organization in California was founded by neurosurgeon Dr. Julian Bailes and Dr. Julian Bailes, a pathologist who identified the first case of CTE in a former NFL player in 2005.

Photo credit:  sportsmd.onpointdigitalmarketing.com
Photo credit: sportsmd.onpointdigitalmarketing.com

The study was conducted on five patients between the ages of 45 and 73, all of them former NFL players with a history of at least one concussion. It made use of a radioactive biomarker that Small had co-invented for diagnosing Alzheimer’s disease. In the study, a compound known as FDDNP was injected into a vein where it circulated through the body and attached itself to any tau the brain happened to have and which could be seen by means of a scan. In all five players, the scan ‘lit up’ for tau, particularly in the areas of the brain which control memory and emotions. In addition, the tau patterns were consistent with patterns detected in post-mortems of people diagnosed with CTE. Think of a Geiger-counter!

Small felt that if scientists could begin to diagnose the disease while a patient was still alive, the method of detection could potentially lead to better understanding and treatment for those afflicted while helping to prevent future occurrences.

Dr. Robert Cantu, a senior advisor to the Head, Neck and Spine Committee at the NFL, commented:

“This is the holy grail if it works. This is what we’ve been waiting for, but it looks like it’s probably preliminary to say they’ve got it.”

While autopsy remains the only definitive means of diagnosing CTE, Small’s study has so far proven to be the most promising of several research projects, all of which aim to get inside the skull and seek out potential brain damage before it’s too late.

Sadly, it was too late for NFL football defense Dave Duerson and linebacker Junior Seau, both of whom died of self-inflicted gunshot wounds to the chest. Duerson died in February 2011, leaving behind a note requesting his brain be donated to research. Autopsies revealed both players had CTE.

Duerson’s suicide note. Photo by Marc Serota/The New York Times/Redux
Duerson’s suicide note. Photo by Marc Serota/The New York Times/Redux

And it seems some players might not want to let others know they have it. In the words of former NHL right-winger Matthew Barnaby:

(Hockey is) a big business and there’s a lot of money involved. We all know as players, we know what management thinks of guys who have had one, two, three concussions, whatever the number may be. Every time you have one more diagnosed, you’re thought of as damaged goods and your price tag when you become a free agent is going to go down. There might not be anyone come calling.

Yet Toronto Maple Leafs goaltender James Reimer feels differently:

 This is like that question, ‘Do you want to know right now the day you are going to die?’ It’s not an easy question to answer. But I think the more knowledge you have about your medical situation, the better. It helps you make more informed decisions. If you have a torn ankle, you want to know how badly torn it is. Same with your brain, if it’s damaged, you want to know how bad.

Potentially, athletes who now show signs of CTE could use the information to decide whether or not to retire and when, thus preventing further injury. But according to Bailes, a lot more research is needed before that can happen.

The Future

Concussions are being treated more seriously now than ever before. No longer are they being perceived as a mere ‘bumps on the head.’ And together with this greater awareness is an increase in corporate support.

The NFL’s latest collective bargaining agreement sets aside $100 million to put toward research, much of which is expected to go to brain injury. But so far, only $1 million has been distributed—to Boston University’s Center for the Study of Traumatic Encephalopathy.

And the issue of funding is a tricky one. Dr. Charles Bernick of the Cleveland Clinic and one who has undertaken studies on the relation between boxing and brain injuries, explained, “Doing studies like this requires funding, but if you’re heavily indebted in an agency that has a vested interest, there can be a view of a conflict of interest.

Still, it’s a start – and most definitely a step in the right direction. CTE testing on living subjects may well be “the holy grail” with respect to brain injury research, but it will take both time and money before it becomes standard practice.

In the mean time, players who have suffered multiple concussions watch for signs and wait for more research. NFL Super Bowl champ Ben Utecht composed a song ,dedicated to his wife and daughters, about an aging football player who fears he may not remember the names of his family one day due to disease from multiple concussions.