My TBI journey – from denial to acceptance

BY: SOPHIA VOUMVAKIS

I’ve been thinking lately about the grieving process I went through after I sustained a traumatic brain injury (TBI) in May 2011. It was a long and difficult journey.

Swiss psychiatrist Elisabeth Kübler-Ross first introduced her five stages of grief in 1969. Although the theory was developed as a result of her work with patients who were dying, the theory has been used to describe the grieving process people typically go through when they sustain other types of losses. The Kübler-Ross stages of grief are: denial, anger, bargaining, depression, and acceptance.

From my own experience grieving my TBI, I would add two more stages prior to acceptance: awareness and adjustment.

photo credit: Into the deep via photopin (license)
photo credit: Into the deep via photopin (license)

In sharing my journey through the stages of grief, perhaps other TBI survivors, their families and caregivers will better understand the emotions and behaviours that TBI survivors exhibit as they move from denial to, hopefully, acceptance.

I did not experience the stages of grief linearly, I did, and still do, almost four years later, float between the different stages. It is also possible that an individual may not experience all the stages.

Denial

The first thing I did when I awoke in the hospital was to call the office to let them know I’d be a little late coming in that morning. There was nothing wrong with me even though I had been unconscious for over an hour, my body was badly banged up, and as we were to discover later that morning, I had a brain hemorrhage.

My denial continued for months – I returned to work within two days of being released from the hospital and struggled.

Anger

I wasn’t coping well with my return to work. My bread and butter had been research – numbers and statistics. I quickly discovered that I could no longer make sense of numbers charts, graphs, and statistical analysis.They were incomprehensible to me. Panic and then anger overwhelmed me.

photo via
photo credit: ancientchristianwisdom.com

Bargaining

My family doctor recommended three months off work. I bargained with her and myself and agreed to three weeks. I then attempted another return to work. Again, I couldn’t cope. So I struck another bargain with myself and my doctor, to work half-days. When that didn’t work, anger reappeared.

Depression

Realizing that I wasn’t coping in my professional and personal life lead to depression. What was the matter with me? On some level, I understood that the physical exhaustion, loss of my ability to make sense of numbers, and mental fatigue was somehow related to my injury, but I was determined that this injury was not going to impact my life – denial once again!

Awareness

In August 2011, my neurologist referred me to an occupational therapist for an assessment. Again, denial reared her head – there was nothing wrong with me and I didn’t need an assessment. Luckily, my family who had noticed the myriad of physical, cognitive, and emotional difficulties I was experiencing, but denying to myself, encouraged me to go for the assessment. It was during my assessments and subsequent treatments that I began to accept that my injury had left me with physical, cognitive, and emotional deficits. Anger, followed by depression resurfaced.

Adjustment

This phase started in September 2011 and continued for almost two years. During this time I worked with my occupational therapist, and together we developed strategies to deal with the physical, cognitive, and emotional impacts of my TBI. These strategies included: physical exercise, cognitive training, and the adjustment of my environment.

photo credit: Dead flowers still on stems via photopin (license)
photo credit: Dead flowers still on stems via photopin (license)

Acceptance

It took me a long time to accept the new me and my new reality. When I am diligent about employing the strategies I developed with my occupational therapist to cope with my deficits I have a good day. When I forget, and slip into denial again, my days are not so good. This is once again followed by anger and bouts of depression. Luckily, these don’t last too long; because I am now aware of the impacts of my TBI, and I go back to diligently employing my coping strategies.

I found that having a framework by which to make sense of my emotions and behaviours as I went through my grieving process helped me to understand that what I was experiencing, and the decisions I was making were not at all unusual for a person grieving a loss.

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

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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.

Women and brain injury: What you need to know

BY: ALISON

Men are more likely to acquire a brain injury than women, and are three-times more likely to die from a brain injury. Perhaps because of this, the media tends to pay more attention to men and brain injury. For instance, name a person in Canada who didn’t know about NHL player Sidney Crosby’s struggle with concussions from 2011 to 2012.

But there’s a lot about women and brain injury which needs to be understood. How many people know about award-winning women’s hockey Olympian Meghan Duggan’s struggle with concussion? Or about hockey player Katie Weatherston, who lost her spot in the 2006 Olympics due to concussion symptoms? Or, more recently, Nicole Setterlund, who left professional sports due to TBI?

photo
photo: Kevin Healy via flickr

Given recent evidence that females are more susceptible to concussions and have greater difficulties with recovery than men, it stands to reason the focus of attention should be shared between men and women equally.  But further research is required to understand how men and women respond to and recover from TBI differently.

Male and female brains: different but equal

Despite decades of jokes on the subject, male and female brains are, infact, different.

In general, male brains are larger than female brains, while female brains have thicker, more convoluted cortexes with more tightly packed neurons (brain cells).

Functionally, male and female brains rely more heavily on different sides of their brains when performing various tasks. Male brains have a higher proportion of gray matter whereas female brains have a higher proportion of white matter. Gray matter is made up of more active neurons which process information. White matter networks information between different areas of the brain and allows thoughts to be intergrated from gray matter, assisting with complex skills such as language.

This suggests that women’s brains are more complex, even though men and women are equally intelligent. Evidence also suggests that the percentage of gray and white matter regions involved in cognition, which are located in the frontal lobes, is drastically larger in women than that in men. Taking into account the specific location of trauma to the brain, this could explain why frontal lobe injuries can be more devasting to females than males.

Women and ABI

Concussions Rates for Men and Women

Although the majority of people who sustain a TBI are male, recent studies indicate that women are actually more susceptible to concussions and experience poorer outcomes than men. Despite the fact that more men play contact sports than women, women suffer significantly higher rates of concussions than men in these sports. Where men have a higher percentage of concussions resulting from player-to-player contact, women have a higher percentage of concussions resulting from player-surface contact and player-equipment contact. A higher incidence rate of sports-related concussions (SRCs) has been documented in females in high school sports (soccer and basketball) and college-level sports (soccer, basketball, and ice hockey). Furthermore, high school girls are more likely to have recurrent concussions than boys.

The gender-specific rates of sports-related concussions have been explained by the fact that women have less neck strength than men. Neck strength is needed to protect the brain from sudden acceleration-deceleration forces. In fact, it is already well-documented that women are more susceptible to whiplash injuries due to sudden acceleration-deceleration. TBI and whiplash are often experienced concurrently and can cause similar symptoms. Besides having stronger neck and back muscles, men also have more cartilage in the facet joints of the spine, resulting in better protection from injury.

A person’s body mass index (BMI) may play a role in transmitting force and contribute to the severity of an injury, since young girls tend to have higher BMIs than boys.

 woman on couch
photo: Tayor Mackenzie via flickr

Here’s what some of the research has found:

Hormonal Changes After TBI

Hormones fluctuate more drastically in women, making women particularly susceptible to migraines and reproductive changes after a TBI. Fluctuations in estradiol are a cause of migraines in women of childbearing ages. Concussed female soccer players report double the rate of migraines compared to the males.

One study followed 104 women with moderate to severe TBI and observed that 46 per cent of those women had amenorrhea (the absence of menstruation) lasting up to 60 months and 68 per cent of them developed irregular menstrual cycles including more skipped menses. The women also reported worsened premenstrual syndrome (PMS) and menopausal symptoms after TBI. Although the study did not see an effect of TBI on fertility, it noted that fewer female TBI survivors had live births than the controls and that those that did had more difficulties in the postpartum period.

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Given the anatomical, hormonal, and psychosocial differences between men and women, it lends to reason that sex should be a factor when planning treatment, support, and return to school/sports/work for TBI survivors. However, further research is needed before sex-specific treatments can be developed and new medical management guidelines established.


 Alison suffered a concussion in 2013 that damaged her mind and body. The injury shook her spirit, but it didn’t take her determination or ultimately her happiness. In fact, she’s certain that she never would have found love, had it not been for her concussion. Although she went from being a workaholic to a homemaker (and a poor one at that), an extrovert to an introvert, and a partier to a hermit, she set new priorities, accomplished new goals, and found new hobbies. Some things haven’t changed about Alison; she still loves dogs, cooking, and helping others. She’s hopeful that she will one day reconnect with her love for traveling. In the meantime, she hopes to help brain injury survivors and their caregivers by sharing her experience and spreading awareness. 

 

Will Tracy Morgan’s brain injury lead to more TBI awareness?

Comedian Tracy Morgan performing on stage
COMEDIAN TRACY MORGAN; photo credit: Mild Mannered Photographer via photopin cc

BY: MARK KONING

Regardless of public figures, such as Tracy Morgan, sustaining a brain injury from a car accident this past June, awareness (in my opinion) has not shone on this life threatening and/or life changing disability enough. I recall back in 2009 when film actress Natasha Richardson had a ski accident where she fell. She complained of a headache and a banged up forehead but refused medical attention, thinking it was not serious. Paramedics on the scene obliged her wishes. She eventually died of a traumatic brain injury.

At the time the news that came out of this story said that things must change, that we must become more aware. What happened? Is Tracy Morgan’s current situation now going to bring about the brain injury awareness that was meant to happen then? I guess only time will tell how much relevance is put onto this injury that affects so many more lives than just the one who sustains it.

Natasha Richardson
ACTRESS NATASHA RICHARDSON; photo credit: fanpop.com

As a brain injury survivor (from a viral infection) and a caregiver to my mom who lives with her own ABI, (sustained from a fall) I can tell you that I have seen awareness grow within the medical community as well as acceptance from individuals and family members affected by brain injury; but awareness (true awareness) should go beyond that. It needs to.

I do believe that these ‘a’ words: awareness and acceptance, are gaining momentum in the form of advocacy through forums, social media, print media, etc. But I do not think the impact is making any sort of wave to society as a whole. Richardson’s tragedy did not open as many eyes as hoped, but maybe Morgan’s will. Ongoing education on a large and public platform might be the answer, because I don’t think celebrity status alone will do it alone.

Accidental tragedy cannot really be prevented, I mean, it is an accident; but having brain injury properly recognized and understood can help needless suffering. The spotlight has to change.

For more coverage of Tracy Morgan’s brain injury:

Daily Mail, Dec 3, 2014  – Heartbreaking video shows a weak Tracy Morgan limping 

Toronto Star, Nov. 19, 2014 – Tracy Morgan battling severe brain injury

People Magazine, Oct. 1, 2014 – Attorney for Injured Tracy Morgan Says It’s Unclear if He’ll Ever Perform Again

PageSix, Sept. 30, 2014,  Tracy Morgan may never perform again 

What do you think? If you’d like to write a blog post about how Morgan’s story – and how brain injury in general – is portrayed in the media email us – info@bist.ca!

Question and Answer: ETalk host Ben Mulroney

In May, 2010 Ben Mulroney ran his first marathon — The Mississauga Marathon — in three hours and 47 minutes. An impressive time for the ETalk host, recognized more for interviewing big-name celebrities on the red carpet than for pounding the pavement.

ETalk host Ben Mulroney
ETalk host Ben Mulroney. Photo courtesy of CTV

But perhaps equally impressive was his fundraising efforts for what he dubbed “The Run for Big Mike.” Mike, a friend of Mulroney’s, had suffered a tramautic brain injury in 2009 in a motor vehicle crash and spent several weeks in coma. He is still on the road to recovery. Mulroney and the team involved in the run placed the funds — $48, 000 — in a trust for Mike’s family to offer them some assistance .

More recently, Mulroney ran in the Brain Injury Society of Toronto’s (BIST) First Annual 5K Run, placing third after kicking off the event with opening remarks about Big Mike and those living with acquired brain injuries.

Mulroney agreed to a Q & A with BIST. Check it out by clicking the link below:

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