Over the past several years, I’ve been giving a lot of thought to the potential impact that my multiple mild TBIs (concussions) may have on my cognitive future. I have to say, it really worries me. It started to REALLY worry me, after my neuropsych eval, when even feeling at my best and being certain I was remembering everything I needed to I scored progressively worse… and worse… and worse… throughout the course of a handful of relatively simple, straightforward exercises.
Here, I thought I was getting everything right, but I was only getting a fraction of things correct. Roughly speaking (as I don’t have the numbers here in front of me right now), first, I scored at around 85%. Next pass, I scored at 60%… then 35%… then 12%. On one of my other exercises, I was starting to tank so deeply, against the advice of my neuropsych I resorted to using compensatory techniques, basically “cheating” the system, so I could score better. The final scoring on that exercise was disqualified because I took shortcuts. In a way, I’m glad I did, because hearing the truly abysmal results would have probably done a job on my head. Big time.
In the months following my neuropsych exam, which showed that despite at least nine concussions over the course of my life, starting around age 4, I only had measurable cognitive impairments in a handful of areas. My speed of information processing, a somewhat limited short-term memory, distractability, resistance to short-term interference with my working memory, and how much info I can take in and process at one point in time were all noticeably less robust than they should have been, given my overall testing. (Note: this is not taking into account the physical issues I’ve got, including balance issues, chronic pain, headaches, light and sound and touch sensitivity, and fatigue, to name a few.)
But still, it really threw me that, here I was thinking I was absolutely fine, when I had these gaps and deficits that were kind of alarming when they were actually measured. Here I’d been going about my life, thinking everything was “normal”, wondering why things weren’t going the way I expected them to, and it turns out that I have a nasty tendency to completely forget things that did not happen within the last 15 minutes.
Sorta kinda like that movie Memento. Except I wasn’t fully aware of what the hell was going on.
That first year or two after my initial testing, when I had to take a long, hard look at my shortcomings, was not the easiest time for me. Not only did I have to develop new ways of approaching my life that factored in these issues and let me work around them, but I had a lot of damage to undo from the past several years after my last TBI in 2004. It took a lot of work, but I did make good progress.
As I progressed, I often wondered about the Root Causes of my difficulties. All the while I was setting things to rights, in the back of my head, the question kept coming up If I had not played contact sports, and if I had not been as physically active as I was when I was a kid, would I be having these problems now? I was haunted by old memories of falling and colliding, ramming into other kids, and being rammed. All of a sudden, I started having these flashbacks, and whenever the came, I would get physically ill and wonder, “Was that the hit?”
I think it’s human nature, to wonder about the causes and try to assign blame, wherever it applies. We are pattern-seeking creatures who are always on the lookout for ways to improve and prevent future issues. Of course, when an event is 30 years old, it’s a little late to try to change it. But I really wondered which of the hits had hurt me the most or maybe all of them had.
And I got more and more worried. I picked up a copy of Chris Nowinski’s book Head Games at the library and read it through (ironically, I misplaced it and couldn’t remember where I’d put it, so I had to buy the library a new copy). Reading about CTE got me more and more concerned, and although I talked to my neuropsych, who assured me that the level of play I’d been involved in as a kid was nothing, compared to the NFL and NHL, I was still worried. Dementia also runs in my family, so that had me worried as well. I was just worried. I got to thinking that I only have so much time left, before I start to lose my mind and am good for nothing and have to either move in with relatives who will take care of me or end up a ward of the state, wasting away in some facility somewhere.
I was freaked out. Nothing that anyone said to me could help. On a certain level, I was convinced I was Screwed. With a Capital S.
The thing is, I’m really bad at giving up. It’s not one of my skills. Plus, the more I thought about head injury, concussion, traumatic brain injury… whatever you want to call it… and I thought about human history, the more it seemed to me that there MUST be something a person can do about this.
I mean, think about it only within the past fifty years or so have people in the “developed” world not been embroiled in constant warfare. With warfare comes trauma, as well as head injury. Indeed, life as we know it in the modern world is a whole lot safer, physically speaking, than it’s ever been. Once upon a time, jobs were physically demanding and often downright dangerous. Time was, people used to work with their hands and their backs and they got hit on the head quite a bit.
When people got repeatedly concussed in the past, did all the world stop? When people started to “slip”, did everything come to a screeching halt? I have a hard time believing that any of what we are facing today is new and novel to us. I have a hard time believing our ancestors didn’t have to face these same challenges… and over the past couple of years, I became convinced that there must be coping mechanisms available to us that we use, but maybe we don’t consciously know about.
So, I started looking around. I’d seen more and more ads for “brain conditioning” exercises, but they all seemed too “one size fits all” for me. Plus, I couldn’t get a clear view of exactly what they were supposed to do for me. In the course of working with my neuropsych and sharing my experiences with them, I became increasingly convinced that it wasn’t necessarily a magic bullet that I needed, but a specific way of living my life that sharpened my cognitive skills and restored the kinds of function I wanted to have, but had lost. Things like anger management and temper control, the choices I made at work and at home, the ways I behaved and responded to the world around me… They started to come back to me in ways I thought were gone for good. And it was good.
But still, I worried about the cognitive decline business. Like Super Bowl XX winning QB Jim McMahon, who worries that his [Super Bowl memories] could fade away like his ability to remember things as simple as why he walked into a room, I really worried too that ultimately, despite all my best efforts, my brain would get the best of me, and I’d end up a hollow shell with only the immediate moment to keep me engaged. After all, there is a whole lot of my student athletic career I can’t remember, including winning the blue ribbon in javelin throw in the Junior Olympics in my area when I was a senior in high school I have the blue ribbon, but no recollection of the throw or the awards ceremony afterwards I can barely recall the event itself.
There are tons of gaps in my memory, which are all the more noticeable because when my memory is “on” it’s practically photographic. When I’m “on” my memory is like a steel trap. But alas, it’s notoriously unreliable, and the times when I am most convinced I am right, are the times when I often turn out to be wrong.
What’s a multi-concussed former athlete to do?
Moreover, what are all the other multi-concussed former athletes to do? What about the tens (if not thousands) of Chris Nowinski’s and Jim McMahon’s of the world, who are looking at mounting evidence about CTE and hearing more and more stories about the devastating effects of repeated head injury, thinking about their future and wondering like me how long they have till everything starts to go to hell?
Well, I started looking around. I had heard someone talk about a book called “Aging with Grace” a study of nuns in Mankato, MN, who were out-living other non-religious members of society in their same region by something like 10 years. I had heard that the focus was on longevity, but there was also an Alzheimer’s aspect to it.
So, I picked up the book and read it, and by the time I put it down, I realized that there was in fact no reason for me to give up on myself, just because of my past and my “prospects”. There was no hard-and-fast guarantee that my concussive history would do me in. While a lot of the nuns studied had succumbed to cognitive decline, they had still lived longer than lots of other people. And not ALL of them succumbed in the same way. In particular, there was the case of Sister Bernadette.When she was in her early eighties, sixty years after she joined the congregation, Sister Bernadette took her first Nun Study examination. She scored high in every category, including a perfect 30 on the MMSE ( mini-mental state examination ), and needed absolutely no help performing the activities of daily living. During her next two exams, there was no evidence of decline in any of the mental or physical tests. In 1996, when Sister Bernadette was eighty-five, she passed away from a heart attack-and we were in for some surprises. As I noted in Chapter 6, an autopsy of Sister Bernadette’s brain revealed that tangles had riddled her hippocampus and neocortex, so much so that Markesbery ranked her as a Braak stage VI [according to the link I've included "All patients with this many tangles in their brain will be diagnosed as suffering from severe dementia. They will be completely unable to take care of themselves and will have trouble recognizing family members."]. This indicated severe Alzheimer’s pathology and was completely consistent with her double APOE-4 status. Yet Sister Bernadette had shown no symptoms of dementia whatsoever. In fact, when we held the consensus conference following her autopsy, we were so dumbfounded by her lack of symptoms that we feared UPS had shipped us the wrong brain. However, her double APOE-4 status cross-checked with the data from Roses’ lab. And any doubt about her reported mental status was eliminated when we watched her incredible performance on the videotapes of her last three exams before her death. At each exam she had performed the feat of estimating the time of day within four minutes of the clock on our computer. To date, Sister Bernadette has the distinction of being the only Braak stage VI in the entire Nun Study who remained entirely intact, both mentally and physically, on all our tests. Despite her severe brain pathology and double APOE-4 status, she had apparently evaded the symptoms of Alzheimer’s by dying before her brain was overwhelmed. Had she lived longer, I suspect that Alzheimer’s would have started to chip away at her memories and other abilities-but we will never know. Sister Bernadette stands as a testament to what is possible in resisting the genetic and pathological forces of Alzheimer’s.
Reading this was like getting a new lease on life. I know, from personal experience, that advanced age does not need to lead to severe cognitive decline. It often does, but I also know a number of folks well over 70 and 80 who have remained sharper than folks in the general populace. Reading about this measured result, achieved during rigorous scientific testing, just put a heavier weight on the info, in my mind. And in many ways, it put many of my fears to rest.
There was something I could do. I wasn’t doomed to a life of forgetfulness and dementia, just because of my concussions. There was actually a ray of light at the end of the long, dark tunnel I’d been wandering down for decades.
Bottom line is, despite the potentially devastating effects of repeated concussion, despite the supposedly inevitable havoc aging plays on our minds, there are things you can do about them. I’m no doctor, and I’m sure there are plenty of experts out there who would caution against too much optimism. But somewhere in the back of my mind, there needs to be some ray of hope, some chance at change, something that a person can do about the after-effects of concussion. I’ve said it before, and I’ll say it again without some sort of response and some sort of hope, our ability to approach and respond to the challenge of concussion (both individually and collectively on a societal level) is going to remain curtailed. Because nobody wants to tilt at windmills, and nobody wants to fight a losing battle, especially when that battle is about the very thing that makes you who you are your brain.
Head injury is nothing new. Concussion is nothing new. Dementia is nothing new, even though we have new names for it and new treatments for conditions like Alzheimers and Mild Cognitive Impairment. The human system, as much as we have advanced culturally in the past generations, remains the same, with the same degenerative processes and the same bumps and pitfalls along the way, as well as the same resources and reserves. What I’ve come to believe, after many dark hours, is that our ancestors dealt with this challenge, we are dealing with this challenge, and the human race will continue to face the challenges of head injury, so long as we are on this planet. We owe it to ourselves and to our future generations to keep an open mind with regard to concussion, tbi, head injury whatever you want to call it so that we don’t end up limiting our future by our present fears, and our forgetfulness about the lessons of our past.