CTE and I

It's been almost a year and a half since I got the diagnosis. 

I was going to try write a separate piece more about the neuroscience of CTE and what is currently known about it and how that is being learned but I don't know now if that's going to happen. In this piece then I'd just like a space to write out my own thoughts on it, my experience of it and the background that led to the diagnosis and what all this means to my future. 

Getting the diagnosis changed everything and nothing. It changed my entire understanding and perspective of everything that's happened for the past many years - especially the years starting around 2007 - but not a great deal changes in how I approach my day to day life. The big picture outlook of course has changed entirely but I'll get to that a little further down below. 

Chronic Traumatic Encephalopathy 

Very briefly, for the sake of a (hopefully) common understanding of what CTE is and means, we'll break down the term. Not the most accurate of words as used here, "chronic" implies repeated, or multiple or ongoing or a series of head traumas. Encephalopathy is a fancy medical term that applies to cellular degeneration in the brain. The "chronic" part also serves to separate the condition (and these are two very distinct conditions) from that of Traumatic Brain Injury or TBI.  

As for the "traumatic" part of the term, this is sort of shorthand for brain or head trauma and is a catch all phrase encompassing everything from mild concussions up to acute and severe brain damage seen in incidences like car accidents that result in short to long term comas. An enormous amount has been learned about concussions in the last fifteen years or so and what defines a concussion or head trauma has changed as a result. We'll leave the details of that to a more dedicated post on CTE and TBI (a good number of followers of this blog have turned out to be from the TBI community). 

For better or worse (I'll get into this more below), Chronic Traumatic Encephalopathy is most associated with professional athletes, particularly American football players formerly of the National Football League as well as (though much less so) hockey players formerly of the National Hockey League. That I use the word "formerly" is a bit of a harbinger of the politics that is involved in CTE (again, more below). The other most identifiable group it's associated with is combat veterans. 

Strictly regarding its most well known association with athletes, it's "for the better" because it gives the medical, science and neuroscience communities involved in researching it a remarkable first hand look into case studies and causal conditions, not unlike how wars and battlegrounds always served at the front line (pun intended) of so many past medical advances. Many athletes are coming forward and providing invaluable research subjects. 

It's "for the worse" because unfortunately CTE has become synonymous with professional athletes and in a sense effectually excluding from better awareness and understanding many ordinary people who may be suffering from it. Once again, more on this below. 

One of the ways CTE differs significantly from TBI is that the symptoms and pathology of the condition may not show up until years later, often up to two decades or more later whereas in TBI the effects are generally immediately observable, the cause (such as a car or bicycle accident, for example) much more obvious and thus the patient undergoing treatments much sooner. Like everything with the brain, the exact pathology and hallmark features of CTE are enormously involved and complex, but a growing body of evidence indicates a build up of tau proteins in and around neurons leading to neuronal degeneration not unlike that seen in Alzheimer's.

Because of the often long delay in CTE's onset, recognizing and properly diagnosing it in any given individual (especially those outside of organized contact sports) has been troublesome to say the least. However, many advances have been made in the last fifteen years stemming from large bodies of evidence (mostly from the study of athletes and combat veterans). Without question the process is better than it was even just ten years ago but it it still fraught with ignorance, misinformation, misunderstanding, politics and so on. There is a very long ways to go before much better, accurate and consistent diagnostic processes are standardized and more widely put in place and applied. 

Personal concussion history

The first came around age 15 and would be very high on the severity scale of concussions. As first concussion experiences go, it would not be untypical of that age; at a party, alcohol involved. Not used to liquor and overly inebriated, I recall stumbling, losing my footing and falling. The last thing I remember was the unmistakable sickening thud of skull making hard contact with concrete. In the general drunken confusion of the party it was assumed that I'd "passed out" from the alcohol and was simply left there. I was unconscious for somewhere between two to three hours and was only noticed when I started violently convulsing. The convulsions didn't stop and an older brother finally took me to the local ER. No one suspected concussion, which is hardly surprising given how little was understood then (this would have been early 1974) and the rather justified and seemingly obvious assumption, given the circumstances, that the symptoms were alcohol and/or drug related. The convulsions persisted for several days off and on. After that, I have no recollection at all of any ongoing symptoms (which again, would have been more out of ignorance and how youth just tend to carry on). 

The second was while playing hockey. I was the goaltender. This would have been within a year of the first one. Face masks were very skimpy in those days (early 70's) and mine was skimpier than most. It came at an age when some kids were learning to shoot the puck with tremendous velocity and "heaviness". The shooter was just such a kid. I recall him moving into an open lane in the left faceoff circle where he wound up and unleashed a "slap shot". Normally I had above average reflexes and reaction time but this shot was so fast and close in I had no time to react. Funny how memory can work; the last thing I recall was the puck just inches from my face in a kind of "freeze frame". It caught me flush (not glancing) in the middle of my forehead on the thin plastic mask with next to no cushioning. I have a vague memory of collapsing like a sack of potatoes then nothing. I have no idea how long I was out but somehow I shook it off and just kept playing (as all athletes in hard contact sports like hockey and football used to in those days). I have no memory at all of the rest of the game, if we won or lost or anything. Coaches and teammates would tend to just give you an "atta boy" and admiration for your toughness and courage, which was, at the time "all good". 

There was another maybe two years later when playing pickup football after school. We played full contact tackle but just wore street clothes with no protective gear at all. Once, while attempting a tackle on an older, bigger faster player I slid down and took a knee hard to the head and got the familiar "bell rung" feeling. Again, nobody would have thought anything of it and you just got back into the game as soon as possible with adrenaline and the pure joy of competing pumping through your veins. 

The fourth would come at age 20 in a logging accident. Sparing the work details and logging jargon involved, a crew of us were attempting a tricky maneuver with an older piece of heavy equipment. Unexpectedly, a long wooden "boom" (about thirty feet long and a foot in diameter weighing about 1,500 pounds) broke loose and swung violently toward me. I had my back turned to it but could hear it snap and instantly understood what was happening. I instinctively tried to jump out of the way but it was too late. It struck me like a giant baseball bat knocking me about fifteen feet away. I have no memory of that, the impact having immediately knocked me out. Later I was told that I'd landed, "done the funky chicken" (severe and violent convulsions), then went dead limp. To a man, the crew all thought for sure I was dead. The next thing I remember was coming to some time later and half a dozen terrified looking faces around me looking down. I have little recollection of the rest of the day but do have fragments of memory of being bundled onto a board stretcher, packed into the company "ambulance" (this was a remote coastal logging camp in British Columbia with no access to medical facilities) and being looked over by the camp first aid man. I returned to work the next day. 

It is now known that the developing teenage/young adult brain (a "critical period" that lasts from about puberty to about age 23-24) is most vulnerable to concussion damage. So that was four concussions, two of them at the extreme of severity, one serious and one "rung bell" type in five years within that period. 

Around a dozen others would follow between the ages of 20 to 47 (when the last of the significant ones would occur). Skiing, motorcycle tumbles (all in Taiwan), various work related incidents, some self-inflicted (more later). What can I say, I lived a rough and tumble - and full - life. 

The last of the significant ones occurred in the summer of 2006 (age 47) while working in home construction. A 20 foot long 2x4 was unexpectedly violently propelled in my direction. This was no kiln dried piece, it was damp and heavy. It (like the hockey puck years earlier) caught me on end flush in the forehead at about eyebrow level. I was out instantly which was a bit of a problem because I was high up on some scaffolding, inner instincts managed to make me hang on and somehow get down to where I just sort of collapsed into a sitting position on the floor while the room and everything spun around. A highly observant coworker later told me with certainty that I was "out on my feet" (not uncommon under certain conditions). 

Having now looked back at everything that would happen in the ensuing years with a fresh look through the lens of CTE, it was that last one that seemed to set in motion the inner changes (and horror shows) that I've endured since then. Symptoms typical of post concussion syndrome began. I recall violent dizziness and nausea spells in which I simply could not stand up or even tolerate being upright at all. They'd strike out of the blue and were a total mystery at the time. I was working with my brother then in home building and would inform him of what was happening and that I had to go to the car and take a break for a while or even just go home. Later in the evening he'd ask me about it and we'd discuss it but we just couldn't figure out what it might be and as these spells persisted over weeks and months it became more and more mysterious. I'd always assumed it was some sort of odd flu bug.

I kept working through it though and in time the symptoms seemed to pass. 

It was about a year later - in 2007 - that my entire inner mental outlook and landscape began to change in ways to this day I cannot explain and which were very uncharacteristic for me at that stage of my life (I was 48 at the time and in very good physical condition able to outwork, if I may boast for a moment, guys half my age). 

I had a good, very well paying job. I worked with a good crew (in high end home building). I also had a family to support and a mortgage to pay. Then one day, in late October of that year on a fine warm sunny fall day that was going well on a job that was going well and in the midst of what was a good, positive atmosphere at work, some sort of titanic shift came over my mind. I can't describe it, even now. For a time I could hardly move. I tried to focus on and continue the task I was on but couldn't. Then, without any conscious thought or plan at all, I just quietly took off and put down my tool belt and without saying a word to anyone simply walked away and never went back. 

The next several weeks seemed like being lost in a foggy daze; there were no plans, no ideas, no direction, no sense of anything. Yet I felt no panic, no anxiety, no sense of fear. There were no big existential questions nor anything in my mind remotely resembling a "crisis" of any kind. I was not depressed nor felt "unhappy". There were no particular urges. There was no restlessness nor any strong desire to seek anything. I felt no anger or resentment to anyone or about anything. In fact, now recalling that time as I write this piece other than strongly feeling I could not go back to what I had been doing, I didn't really feel anything at all and I couldn't tell you how I passed the next several weeks or what I did. It was a state I'd never been in in my life before. 

That would, to put it mildly, change. 

The Symptoms

While I'd dealt with symptoms and behaviours and state changes associated with bipolar most of my adult life, for here and this piece and for the sake of (relative) simplicity, I'll focus on the last ten years or so. 

During that time my mind did some very, very bizarre and highly unusual things (these I do not include among the symptoms below). Large parts of my personality and character changed in ways I did not recognize (Others saw and perceived of this differently but that's a whole other topic I best leave to address elsewhere. All I can say for now is that people are notoriously poor observers, their perceptions coloured by denial and their own beliefs and hopes and so on. As I alluded, this alone is a very complex topic). 

Now looking back at many of the symptoms commonly associated with CTE, it is nearly impossible to untangle them from those also associated with bipolar. 

The question (or a question) becomes, does this change for me the diagnosis of bipolar? This is unfathomably complex (as any diagnosis would be) but in short, no. There were extended periods of mania or hypomania (or "mania lite" as I like to say) that clearly belong under the bipolar side of the ledger. The depression side of the equation does change entirely, however. But I best leave an extended look at the depressive symptoms aside for now as I think that will run too lengthy here. 

I'm going to start with a brief list of symptoms in which there is crossover between CTE and bipolar. 

- mood swings (long time readers will know how "fond" I am of this term)

- periods of extreme irritability ("violent" temper, shortness of patience with others, this sort of thing)

- many personality and character changes (there are nearly countless individual variations on how these may manifest)

- fatigue (no, not the "fatigue" most people are familiar with)

- cognitive and memory difficulties at times

- difficulties in staying focused

- periods of depression (again, no, not what most people are familiar with)

- periods of severe "brain fog", an almost crippling inability to think or process cognitive thoughts or what's going on around one (IE: sensory input)

- periods of blunted emotions

- suicidal thoughts, planning and attempts

- periods of difficulty in feeling or experiencing pleasure (often clinically referred to as anedonia) 

Then some of the symptoms that are more clearly associated just with CTE that I have been experiencing and have been increasing in both frequency and duration

- near constant head pain (again, no, not the "headaches" most people are familiar with)

- odd burning tingling sensations in the head, mostly in the area of the frontal lobes

- an odd, impossible to explain or describe throbbing pulsing sensation that's very uncomfortable that now occurs daily

- phantom tingling, prickling and "bug crawling" like sensations in the skin

- periods of dizziness and feeling light-headed

- cognitive impairment and decline


All of these, you will note, seem like "common" behaviours or symptoms. And this is at least somewhat true. This is where and why diagnosis for this kind of thing can be extremely difficult. 

It's also why I stay as far away from lay people as possible (and most professionals as well, truth be told). I have learned the hard way innumerable times not to describe to or talk about these symptoms with anyone outside of specialists. 

All of these things shift and change around on a daily basis. It is almost literally impossible to know what to expect at any given time. As always though, I daily work like hell at managing it. I have learned how to recognize symptoms and how to work around them on any given day and manage what needs to be done as best as possible. 

The majority of most days, however, is passed "resting", being able to do very little mentally, emotionally or physically. 

There are times I feel very good, like I could do almost anything. Here is where I may personally differ from most CTE sufferers in that I can still get those uber positive, optimistic, energetic enthusiastic periods from a mind prone to "manic upticks", we'll say. There are times when all the training and exercises I do do pay off and I'll believe it's possible to get - as all I've ever wanted - "my life back". 

Then the harsh physical realities of a neurodegenerative disease kick in. And the fatigue. And all the rest of it. It can come like a hammer blow some times. 


There is, I must be clear, no cure for CTE, there is only managing of symptoms. I said above that little for me changes in my day to day life because it turns out that the program I created six years ago to deal with all the symptoms of what I thought was "just" bipolar is pretty close to the best of what can be done to manage the symptoms of CTE. 

Ironically (and I still kick myself for not seeing the connection earlier), when I was creating my program I looked a great deal into the concussion protocols and therapies that were being created for top athletes trying to get back to their respective sports and modeled a lot of my program on what they were doing. 

That said, and it is here where I'm going to allow myself a trace (but only a trace) of bitterness (though this is also speaking for the many others like myself in similar positions), there are next to zero treatment and therapy programs and resources for the common person. Almost everything at present is being focused on current or retired professional athletes or (mostly in the USA at present) military veterans. As I said above, this is for better or worse; it's great that this highly focused research and work is being done with such a specific body of patients but for now it's unfortunate that this - not to mention better awareness, recognition and diagnosis - has yet to filter down to what are probably thousands of people like me who have a history of amateur sports concussions, work related concussions and other lifestyle associated head traumas (motorcycle and/or bicycle tumbles, skiing tumbles, etc) or, darkly and more terribly, as results of domestic violence.

However, I have confidence that, like all medical advances, this will happen in time but for now it can be a difficult pill to swallow for those suffering from CTE who get no recognition (either clinically, socially or from family) or resources. 


Myself, I have made peace with it. Well, mostly. There are, of course, "days". Generally I don't think there's anything "special" about being impacted by the effects of CTE; our bodies and brains break down in innumerable ways producing a variety of life impacts, this is just one of them. Here it is, deal with it.  

I am exceedingly aware of what is happening inside my head and where this is going. There is no veil of denial or happy making delusions for me to hide behind. It is therefore hard sometimes not to get hit with "what might have been" and deal with what it is robbing from my life, both day to day and the big picture. 

There is not a single solitary aspect of my life that this has not severely impacted. It has been in many senses "crippling". I am not able to work or hold a job (I have to address the impact of this separately, it is not something experienced the same by all people). It has hugely impacted my social life. It will impact my life expectancy. 

Again, however, I speak for all who are living with CTE. 

Yet, I have no regrets. I look back on my life and think about what I would do differently. 

The answer is not a thing. 

From my youth I have taken the route away from what I guess most people would regard as the "safe and cautious" way. Life for me has always been to be lived to the max, experienced to the max. Not sitting back and watching. 

So no, I don't expect nor in any way want "sympathy" or, god forbid, pity. 

I do NOT, for the record, "self-medicate" with alcohol or recreational drugs nor do I take psychiatric drugs or any other kind of prescription drugs. From the beginning of my study of the brain and brain function and what happens to create any of the symptoms I listed above, my position has firmly been that no way can any synthetic substance "reverse" or "fix" anything. Nothing I have seen in six and a half years of following the world of neuroscience has given me even the slightest reason to change that position. I am exceedingly careful with anything I ingest, with the firm (evidence based) belief that foreign substances could only make things worse. 

Everything I continue to do is laid out very briefly and roughly in the post Positive Difference Making Fundamentals (among many other posts in the blog pertaining to learning to manage one's mind, behaviours and lifestyle). 

All I've ever wanted (and most others, I believe) is understanding. Compassionate understanding. Some sort of dawning "aaahh, I see and understand what has happened with you and why" type understanding. That has been the entire "raison d'etre" of all the research I've done and everything that's gone into this blog for going on seven years. To not be judged. For anyone not to be judged. 

That's all I ask.

Thank you for reading, 

BGE - 8/11/2019