Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

Helmets will not keep you from getting concussed

brains-in-helmetsTBI is real for folks who play collision sports. Call it “concussion” or “mild” TBI or whatever else you will. Call it “character building” and “just part of life”.  But brain trauma goes hand-in-hand with slamming your body into other players on a regular basis.

Helmets will not keep brains from slamming against the insides of skulls. They literally can’t.

Coaches and parents need to get real about this, and understand the conditions they are helping to create.

Truly, I do not understand the rationale behind keeping kids playing collision sports — whether they’re young OR older. Helmets give you a false sense of security — which actually makes the situation worse, because a concussed brain can feel like a great brain. I know from many personal experiences, when I hit my head hard enough to alter my consciousness, after an instant of feeling like the lights went dim, when “the lights” came back up, I felt fantastic. Like I was superhuman. I’m not the only one.

As Riki Ellison, a former teammate of Junior Seau who like Seau played middle linebacker at USC and in the NFL, put it:

The fact is that when you receive what I would refer to as a partial but playable concussion, there is a unique feeling of being high, of floating, of being numb to pain and unaware of other distractions. This produces a happy state that translates to a belief of invincibility and a superman complex. In some ways, it acts just like a drug. You become addicted to that feeling and want more of it. And when you get another hit, it feels even better. (read more here)

And as long as kids are wearing helmets, and parents and coaches are thinking that they’re safer because of it, we’re just creating more opportunity for kids to injure themselves — in the short and long term.

I’ve been accused of attacking football. Not really. What I’m guilty of attacking is our willful ignorance about what role concussion plays in our youth sports… and how that affects the well-being and futures of kids who are “safer” wearing the latest headgear.

It’s one thing to not know about the dangers. But when people tell you, plain as day, and you refuse to take note — or do something about it — well, that’s something else, entirely.

And that goes for all collision sports where headgear is supposed to protect the players.

How Can I Recognize a Possible Concussion?

One of the nice things about being a blogger is that I can add my information to the general wealth of data about subjects of interest to me – in this case, mild traumatic brain injury. This blog is about more than telling my side of the story — it’s about fleshing out info that other trusted sources provide, in ways that are personal and individual… and hopefully contributing to the general understanding about traumatic brain injury, and sports-related concussion in particular.

The CDC has a wealth of information on concussion in youth sports over at their Heads-Up site.

What’s missing is a bit of in-depth explanation about the different points they make.

Since this month is Brain Injury Awareness Month, I hope to contribute to the awareness piece with further info and examples from my own concussion experiences.

From the CDC site about recognizing concussions:

To help recognize a concussion, you should watch for the following two things among your athletes:

  • A forceful bump, blow, or jolt to the head or body that results in rapid movement of the head.

AND

  • Any change in the athlete’s behavior, thinking, or physical functioning.

Athletes who experience any of the signs and symptoms listed below after a bump, blow, or jolt to the head or body should be kept out of play the day of the injury and until a health care professional, experienced in evaluating for concussion, says they are symptom-free and it’s OK to return to play.

Signs Observed by Coaching Staff

  • Appears dazed or stunned
  • Is confused about assignment or position
  • Forgets an instruction
  • Is unsure of game, score, or opponent
  • Moves clumsily
  • Answers questions slowly
  • Loses consciousness (even briefly)
  • Shows mood, behavior, or personality changes
  • Can’t recall events prior to hit or fall
  • Can’t recall events after hit or fall

Symptoms Reported by Athlete

  • Headache or “pressure” in head
  • Nausea or vomiting
  • Balance problems or dizziness
  • Double or blurry vision
  • Sensitivity to light
  • Sensitivity to noise
  • Feeling sluggish, hazy, foggy, or groggy
  • Concentration or memory problems
  • Confusion
  • Does not “feel right” or is “feeling down”

Remember, you can’t see a concussion and some athletes may not experience and/or report symptoms until hours or days after the injury. Most people with a concussion will recover quickly and fully. But for some people, signs and symptoms of concussion can last for days, weeks, or longer.

Now, for some explanation to fill in the blanks…

To help recognize a concussion, you should watch for the following two things among your athletes:

  • A forceful bump, blow, or jolt to the head or body that results in rapid movement of the head.

The head, atop the neck, holds our precious brain — which has the consistency of pudding, and is surrounded by fluid which protects it from the bony inside of our skulls. Unfortunately, the bony insides of our skulls can have rough/sharp edges which can rake across the surface of the brain and cause damage that way, should the head/bodybe knocked so hard that the brain pushes past the protective fluid and scrapes against the inside of the skull.

You can see a video of different types of brain injury at YouTube. It’s very informative, and I recommend it.

When the body or head is hit hard enough, the brain can hit against the front inside part of the skull, be injured there — and then fly back against the rear of the skull (called coup-contracoup — which means head-back0fhead — injury), causing damage to the rear part of the brain as well. Under ideal conditions, the protective fluid provides an ample buffer to shelter the brain, and the inside of the skull is not really sharp and uneven. Unfortunately, there are no guarantees that that’s the case.

Forceful bumps or blows or jolts to the head can be things like:

  • being hit on the head by a ball, such as in soccer or baseball
  • colliding with another player and bumping heads
  • being elbowed or kicked in the head
  • colliding with the catcher and slamming your head against his/hers when you’re trying to steal homebase
  • falling and hitting your head on the basketball court floor

Another way the brain can be injured by a hard hit to the body, is a whiplash effect — where the connections that are located at the base of the skull and neck are twisted and torn by the head snapping forward and backwards really hard. You don’t need to be knocked out, and you don’t even need to have your head hit, to sustain a concussion in sports.

Forceful bumps or blows or jolts to the body can be things like:

  • being tackled hard in football
  • being fouled hard and knocked to the floor in basketball
  • falling during a soccer game
  • colliding with another player when going after the same ball
  • landing hard after any kind of fall, even if your head doesn’t hit the ground
  • running into the wall when you’re eplaying squash/raquetball

It’s important to remember that these very common collision/impact occurrences (which are part and parcel of just about any sport) will NOT necessarily lead to concussion. If everyone who was tackled hard, or fell, or was fouled hard and ended up on the floor/ground sustained a concussion, there would be a whole lot of impaired people walking around.

Being hit or tackled or falling during a game or practice is NOT a guarantee of a concussion. This is where the next criteria comes in… the “and” part.

AND

This AND is important. The first set of criteria — the bump, blow, or jolt to the head or body are no guarantee that a brain injury has occurred, but they can serve as a trigger to watch out for the following. The next point is what acts as an alert that a concussive event has occurred.

  • Any change in the athlete’s behavior, thinking, or physical functioning.

Signs Observed by Coaching Staff

  • Appears dazed or stunned
  • Is confused about assignment or position
  • Forgets an instruction
  • Is unsure of game, score, or opponent
  • Moves clumsily
  • Answers questions slowly
  • Loses consciousness (even briefly)
  • Shows mood, behavior, or personality changes
  • Can’t recall events prior to hit or fall
  • Can’t recall events after hit or fall

Symptoms Reported by Athlete

  • Headache or “pressure” in head
  • Nausea or vomiting
  • Balance problems or dizziness
  • Double or blurry vision
  • Sensitivity to light
  • Sensitivity to noise
  • Feeling sluggish, hazy, foggy, or groggy
  • Concentration or memory problems
  • Confusion
  • Does not “feel right” or is “feeling down”

Here are some examples from my own experience:

When I sustained a concussion from a hard tackle during a football game in high school, there was an immediate change in my thinking and physical functioning.

  • First of all, I was not thinking as quickly as I was before the hit. Even I could tell I was slower — I wasn’t following the calls by the quarterback very well, and I was clearly a little dimmer than I had been before the hit. I had trouble understanding what was said in the huddles before the following plays, and I had trouble following the instructions I was given. For example (I can’t remember the exact details, but this is how it was), when I was told to go long and then cut left at a certain point, I went long, but I didn’t cut left.
  • Secondly, I was not as coordinated as I had been before the hit. I ran clumsily — like I was drunk — and I couldn’t catch the ball when it was thrown right to me. I also stumbled a lot, and I fell a few more times. For all I know, I did more damage to myself, but I was so totally focused on continuing the game and not letting my teammates down, I refused to take myself out of the game. They had to stop the whole game, completely, to get me to quit playing. I was that stubborn.

When I sustained another concussion from a fall during a soccer game a year or two later  in high school, there was yet another immediate change in my physical functioning and behavior.

  • First of all, I was a lot less coordinated than I had been before I fell. I couldn’t control the ball as well as I had before, and it felt like I was moving in slow motion. I stumbled and fumbled, and there was obviously something different about how I was playing.
  • Second, I was not the same player I’d been before my fall. Before, I had been aggressive and confident on the field. Afterwards, I was hesitant, confused, and I hesitated before shooting on the goal (or just plain failed to shoot). I had a number of opportunities to score, but I didn’t, because I was uncertain and confused. I was also less able to be a team player. I didn’t pass the ball to my open teammates as frequently as I should have. I also became more withdrawn and was not communicating with the coaching staff on the sidelines. It was like I was in my own little concussed world, suspended in a foggy soup that slowed down all the input and output.

Athletes who experience any of the signs and symptoms listed below after a bump, blow, or jolt to the head or body should be kept out of play the day of the injury and until a health care professional, experienced in evaluating for concussion, says they are symptom-free and it’s OK to return to play.

Absolutely, positively. This must be done. Unfortunately, I myself never received any medical evaluation or treatment for my injuries. But on the bright side, I was removed from play in both instances. Nobody watched me afterwards to make sure I was symptom-free and it was OK for me to return to play. Then again, by the time I got to those games, I’d had a number of TBIs already, so I already showed symptoms of impairment. Still, the changes I did experience, on those two separate instances, were clear indicators that I’d undergone a concussive event. I only wish someone had known what to look for, and helped me out.

Another important piece of the CDC info is:

Remember, you can’t see a concussion and some athletes may not experience and/or report symptoms until hours or days after the injury. Most people with a concussion will recover quickly and fully. But for some people, signs and symptoms of concussion can last for days, weeks, or longer.

This cannot be overstated. Concussion, hidden as it is inside the skull, can also be hidden by time. It can take hours or days for symptoms to show up, which is why it is so important that not only coaches, but also teachers and parents and teammates are all familiar with the danger signs and informed about how to respond appropriately.

One of the things that can show up later, are behavioral issues. Indeed, behavioral issues are the bugaboo of mild traumatic brain injury, because on the surface everything looks fine, and the brain may have recovered from its initial trauma, but there are microscopic changes under the surface that can have long-lasting effects. If you know someone who plays sports, whose behavior has suddenly started to change for the worst – suddenly they have a lot of anger, rage, irritability, distractability, sensory issues, fatigue, insomnia —  it could be they had a concussion during a game or some other event — and nobody realized it, including them.

Concussion doesn’t just affect the student athletes — it affects everyone who interacts with them, everyone who loves and cares about them. It’s in all our best interests to learn about it, learn what to watch for. And to report it to someone who can help.

As the CDC says, most people recover quickly and fully, and it doesn’t need to wreck their lives. But if you don’t pay attention to the first warning signs, it is all too easy to re-injure yourself (having a concussion increases your chances of experiencing another one from 2-6 times). So, paying attention, right from the get-go can help prevent other problems from happening.

In retrospect, I wonder what might have happened, if I’d stuck with track and field and cross country exclusively, and not played any team sports that involved tackling or the danger of falling/collisions. I wonder if I would have been so susceptible to drugs and alcohol, if my behavior would have been so problematic. Thinking back, I had a ton of problems when I was a kid that actually resolved as a result of organized sports. Unfortunately, the thing that helped me most, also introduced more problems to my mix.

Well, I can’t worry about it. What’s done is done, in my case. I’m just happy I’m as functional and well-off as I am, today.

I also hope that coaches and trainers and teachers and teammates are learning enough, today, to help avoid the kinds of situations I got myself into… and help address the after-effects of the kinds of injuries that I — and hundreds of thousands of others young athletes — experienced. The CDC material is really helpful, and they have lots of free information and additional materials available.

Check ’em out. It’s worth the trip.

Telling stories

I’ve been coming across a lot of references people are making to telling stories… what stories we tell ourselves, what stories others tell us… what stories we want our lives to embody.

Once upon a time, I was big into stories. I wrote constantly, and much of what I wrote was stories — fiction, non-fiction… just accounts that were meaningful to me. Sometimes others found them meaningful — when I showed them to others. Most of the time, I kept them to myself. They were my stories, and I didn’t want  anyone else meddling in them.

I continue to write, but now I share my stories. I do a whole lot more writing online, than in my onetime journals, and it’s good. It’s a good development. Looking  back at all my past journals, I’m amazed at how circular I was — rehashing the same topics over and over and over and over and… well, you get the point.

I have that problem a lot less, now that I’m putting what I write out in public.

Keeps me honest.

It’s good for me.

And I’ve been thinking it might be good for me to do more of this writing — along different lines. I’ve written books before, and it’s strangely easy for me to collect several hundred pages of words that hang together well. I’ve written under pseudonyms, to keep my writing identity safe and sound, and the material I’ve written has gotten good reviews from some. And I think it might be time for me to write about growing up with TBI. I’ve been looking around some, and it doesn’t appear that there’s much literature out there about kids with head injuries — especially from the point of view of the child.

The books that I have come across about kids with TBI have been either non-fiction (I did find a really good one, the other week), or they’re biographical accounts/personal stories from the point of view of parents. Not much — that I’ve found — has been written by people who grew up with TBI.

Could be, people just want to put it all behind them and forget about it. I could see that. I feel that way, myself, sometimes. But then I think about all the parents and the kids out there who have experienced TBI — especially concussions in sports, which is so common — and I think, “Maybe this is something I need to NOT put behind me. Maybe it’s something I need to put out there in front of me.”

I’ve been feeling incredibly emotional, lately. My life is undergoing some significant changes, with my home life shifting and taking on new aspects of independence for both my spouse and me, and my job not being the most wonderful experience in the world. I’ve been waking up regularly at 3 a.m., with this nagging sense that I need to make some changes… just what those changes are, exactly, I’m not sure.

I know what I would like to do — have a lot more freedom to move and breathe and travel and enjoy my life (I haven’t had a real vacation in quite some time). I would really like to devote more of my time to this work of educating folks about TBI, writing about my life, informing people of the important details, helping survivors better understand themselves and manage their issues, and reassuring worried parents and spouses and friends that things don’t have to end badly. There is hope.

Yes, I know what I would like to do. I’m just not certain how to get there.

But writing this book will be a start. Yes, I think I’ll start here.

Extreme Sports… Extreme Living… Extreme Dying

I’ve been thinking a lot about extreme sports and TBI, of late. Just this past week, Nodar Kumaritashvili, a Georgian luger, died on the Whistler track in Vancouver during an Olympic training run. I watched a graphic video of it on CBSnews.com, and it’s pretty wrenching. He lost his sled in a turn, flew off, and went into a pole.

I have heard it said that he was relativley inexperienced. I have also read that he told his father he was terrified of the track. And I’ve read discussion and debates about how lugers and other winter athletes know the risks, but they choose to focus on the goals, the rewards, the prizes that come from winning. If they give into fear or they hesitate, all may be lost.

At the same time, I’ve been reading a bit about Kevin Pearce, the snowboarder who sustained a traumatic brain injury on a halfpipe during a training run. ESPN’s headline seemed to downplay the injury — Pearce hurts head training on halfpipe. Other news told a more sobering story — critical condition… moved to a brain injury hospital in Denver, where he’s making better progress than expected, actually walking and responding.

Only folks who understand the impact of TBI — more than what many folks think of as “just a concussion”… more than “just” a bump on the head — will fully appreciate how much progress Pearce actually is making. Most folks may very well wonder what the big deal is. If Pearce is doing that well, yes, he is making amazing progress. It probably helps that he’s an athlete.

Over the past holidays, one of my nephews had a fall from about 6 feet up. He landed hard and was addled afterwards. I wasn’t there to see it happen. And everyone else who was there just let it slide. According to my nephew, he’s had about 12 concussions. He’s into extreme sports. He skateboards and is an all-out outdoor enthusiast. He’s a great kid — kind and soft-spoken and quite polite. His mom has done a great job with him, I have to say.

But I worry about him. I wonder about him. He’s fine now, but what about in the future?

I look back on myself at his age — 13 and rarin’ to go. Immortal, as far as I was concerned. Untroubled by hard falls and spills and being knocked silly, every now and then. I played hard and fast, and I didn’t follow instructions about being careful. That was for sissies. Wusses. I had a game to play, a goal to reach, and nothing — no timidity, no fear, no trepidation, no namby-pamby wuss — was going to hold me back.

And I think about the concussion prevention/management legislation that’s been proposed in multiple states — some of it requiring medical clearance before kids who have head injuries are allowed to play agan. I wonder what kind of an impact that’s going to have at all — if it may in fact cause more dangerous cases to go unnoticed. I can tell you from personal experience that when I was a kid,  if I thought I was going to be told to sit out a game I wanted with all my might to play, I either lied through my teeth to convice my coach that I was okay. If, that is, I even realized that I was having problems. A lot of times, I didn’t. Or, if I did, I ignored it and played through.

It’s really, really hard to explain what it’s like to get your bell rung in a game, and not be able to think well enough to protect yourself from further injury. It’s like, you know there’s something up, but you keep going, keep playing, keep pressing on. You don’t want anything to stop you, and sometimes the more your bell is run, the harder you push through.

You should sit down. You should rest. Part of you knows that. But there’s this other part that’s very go-go-go that gets jammed in gear and you can’t disengage. Even when there’s this little voice in the back of your head telling you that you need to take a break… that something’s not right… your coordination is off… you don’t have the same control you did, just a few minutes ago… still, you’re jammed in gear, and like the jammed accelerators in pre-recall cars, accidents can happen as a result. More accidents. Just when you least need them.

It’s a tricky, tricky thing, trying to stay safe when you’re just trying to play and have a good time. The Olympic athletes who sustain injuries (or are killed) during training runs… some folks would consider them foolhardy and blind to do the things they do. But when you’ve been pushing the limits, going faster, farther, higher, for years on end, you sharpen your taste for breaking records, pushing past limits…. and with each successive broken record, the bar is set higher. And higher. And higher.

It’s a wonder anyone survives at all, quite frankly.

But here’s the thing — all those stress hormones pumping through the body, all that adrenaline running in your veins, all the hype and pump and competition… they literally change you. They change your brain, they change your body. Just ask people with PTSD — a super-extreme version of what happens to you over years and years of intense extreme sports experiences. Your brain gets used to the pump. It craves it, actually. And if you’ve been marinating in that hormonal soup long enough — and have gotten plenty of rewards from pushing past your limits — pushing through till you’re breaking through becomes very much a part of your person.

And without it, you’re lost.

Literally. It’s not just some psychological “addiction” to the thrill that’s at work. It’s a fundamental, integral part of who and what you are — a piece of your puzzle that has to be fitted into place, in order for you to feel even remotely human. Someone who is at their best when they are pushing the envelope is going to continue to seek out those situations where they can push through, because they want to be at their best. Especially when they are an athlete — and a world class one at that. We athletes want to be the best we can be. We want to perform well. We need it. We crave it. We must have it. If we can’t get it, then who are we? Just another schmoe sitting in a cubicle, answering phones, or wearing an apron and telling people where they can find the plumbing supplies.

It’s not that the athletes (and other high-performers) of the world can’t deal with regular life. We just operate at a different level. And to get to that level, you need an element of risk to sharpen the senses. You need a bit of an edge. And if you don’t have it… can’t get it… then it’s not just your performance that suffers. It’s your very self, your very core, your very interior person, that suffers, as well.

It’s not just thrills we seek. It’s not just mindless risk that we’re addicted to. Those of us who are peak performers — whether athletes or stock brokers or CEOs or award-winning writers, scientists… whatevers — need a little extra something to stay on top. We needed it to get there, and we continue to need it to stay there. To do anything less than push past our personal best, is to fail to be the persons we are. Some of us turn to drugs. Some of us turn to foolhardy decisions. Some of us turn to adultery with easily recognized flings. Some of us bungee jump. But the need and the drive is the same — seeking the edge, so we can find ourselves. So we can be ourselves. So we can be more of who we have become over time, over years of progressively more advanced tests, and progressively higher risks.

Deathwish? No.

Lifewish – yes.

Now, I know my psychotherapist friends would argue this point with me. BUt you know what, none of them are — or ever have been — athletes. They are not particularly active, to begin with. Understanding what would cause someone to lie down on a small sled and hurtle downhill at 95 mph with just a helmet to protect them… or what would induce someone to snowboard high in the air and do flips and twists… well, that takes a certain kind of experience. Physical experience. Physically extreme experience. Now, I’ve never been attracted to extreme sports that involved fast speeds and heights (my balance has never been good enough for me to go there), but I do know what it’s like to push myself as hard as I could go for 3.2 miles… or around a track 8 times… or down the final stretch of an 800 meter race… or down a runway with a javelin in my hand. I do know what it’s like to practice in all kinds of weather and push through, no matter what. I also know what it’s like to lay it all on the line, time and time again… to reap the rewards of success… and to suck up the dregs of failure and start all over again — next time working all the harder.

It’s not about some psychological death wish. It’s not about having no sense of imminent danger. It’s not about any conscious thought process, other than focus on the end-goal, the prize, the medal, the reward. On some level, it’s not even a mental process at all. It’s a physical, spiritual, metaphysical process to which the mind must be subservient. And as such, there will always — for some of us — be an element of terrible risk… risk of immediate death or eventual debilitation.

And until people figure out how to get that “high” (that insulting slight of a term for what is a complex process) from a safe and secure place, there will always be mortal danger for the best of the best. We don’t just like that pump; we need it. We must have that rush that gets you thinking better, cogitating more clearly, and feeling like you’re alive again. Until people acknowledge this as a valid human need and figure out how to help us get it without putting our necks on the line, the only way to get that will be through more risk, chancier actions, and increasingly dire danger.

After all, if you can’t live fully without that biochemical pump, and you can’t stand how you feel without it, the prospect of being hurt — or dying — while marinating in that soup of fully alert humanity, probably seems worth the risk.

The difference between concussion and mild traumatic brain injury

Follow these links for more writing (and thinking) about concussion vs. traumatic brain injury, including the reasons why I believe concussion and brain injury are two separate parts of an ongoing process. I also believe we should stop calling the whole process “concussion” and refer to it as Concussive Brain Injury, or CBI.

I’ve been reading up on University at Buffalo’s work with concussion rehabilitation, using regulated exercise to deal with post-concussive syndrome (or post-concussion syndrome).

I have to say, it’s probably the most exciting news I’ve come across in a while. With all the talk about the NFL’s new post-concussion guidelines (which may or may not make a difference), and the increasing awareness about head injuries, expecially mild traumatic brain injuries (MTBI), it gets a little depressing, thinking about all the people who are getting hit in the head and suffering for years as a result.

A lot of folks are talking about it being an epidemic, that concussions are no joking matter, and lots of people are getting on the helmet bandwagon (especially since Natasha Richardson died from a brain injury while skiing). Prevention is great. But concussion is all but unavoidable in sports — especially student athletics. It happens. All the time. Yet nobody seems to have come up with a reliable way of addressing it when it does happen. Aside from bed rest and taking it easy, suggests for howto deal with concussions/brain injury are few and far between.

We know concussions happen. We know head injuries are common. We know they can have serious long-term consequences. You can try to prevent them, but you can’t be successful 100% of the time. And if you do have a head injury, you have to be sidelined from your life/sport, with no guarantee that the “treatment” will actually work.

I was starting to get seriously depressed.

Then, suddenly, I was looking around the other day and I found that the University at Buffalo has been working with regulated exercise to treat — even heal — the after-effects of concussion. Post-concussive syndrome is, according to the definitions of Willer and Leddy (at UB),  “persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)”. According to them, post-concussive syndrome “qualifies as mTBI.”

This is interesting. I have heard a lot of people say that concussion is an mTBI, and the two are interchangeable. I am not a doctor, and I don’t have medical training, so I can’t throw my hat in the ring on that debate. But it is interesting to me, that people distinguish between the two.

At the UB web page on concussion research, there are some interesting papers, and they do talk about the difference between concussion and mild TBI.

Here’s what they have to say in the paper Retest Reliability in Adolescents of a Computerized Neuropsychological Battery used to Assess Recovery from Concussion (bold is mine)

A recent review … of concussion and post concussion  syndrome provided a model for distinguishing concussion from mild traumatic brain injury (mTBI) and post concussion syndrome (PCS). The model uses the most commonly accepted definition of mTBI and the one proposed by the American Congress of Rehabilitation Medicine and the Centers for Disease Control: loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15 …. The model also uses the most commonly accepted definition of concussion as established by the American Academy of Neurology (AAN): a trauma induced alteration of mental status that may or may not involve loss of consciousness …. Although not explicitly stated in the AAN definition, concussion is generally viewed as a transient state from which the individual will recover fully in a relatively short period of time …. In contrast, mTBI is viewed as a permanent alteration of brain function even though the individual with mTBI may appear asymptomatic. Post concussion syndrome was defined in the Willer and Leddy … model as persistent symptoms of concussion past the period when the individual should have recovered (3 weeks) and therefore qualifies as mTBI. Neuropsychological testing is often used to describe the impairment associated with mTBI and PCS and have done so with relative success ….

So, basically,

  • mTBI = a loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15
  • Concussion = a trauma induced alteration of mental status that may or may not involve loss of consciousness; it’s a transient state from which the individual will recover fully in a relatively short period of time
  • Post concussion syndrome (PCS) = persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)
  • PCS, due to its enduring nature, qualifies as mTBI

(Note: I think someone needs to fill in the gap about how PCS satisfies the criteria for mTBI,  if they require that there be some loss of consciousness or amnesia involved. How lasting effects qualifies based on these criteria puzzles me. But for the purposes of this discussion, I’ll let this slide.)

I find this really compelling information, and it helps me make more sense of the whole “concussion thing”. I know I’ve sustained a bunch of concussions in the course of my life, and I also know that I have been diagnosed with “Late effect of intracranial injury.” But I could never really distinguish between the mTBI vs. concussion. I actually thought — and had been told — that they’re the same thing.

But that never made much sense to me, because when I look around at me, and I read that “An estimated ten percent of all athletes participating in contact sports suffer a concussion each season” And that’s just athletes. Plenty of people fall down, too, or are in car accidents. I’m not entirely sure what to make of it. Apparently, hundreds of thousands of people sustain concussions each year, yet the general population doesn’t appear to be completely crippled by TBI (though some people I know would debate that 😉 ) How is it possible, that so many people are sustaining concussions, especially in their youth and/or in sports, yet we’re not all running around impaired?

Making the distinction between a concussion that is transient, and a concussion that turns into an mTBI makes all the sense in the world to me. It makes it possible distinguish between someone who’s experiencing short-term issues, and someone who needs to deal with a broader-spectrum and deeper set of challenges. And in doing so, it de-stigmatizes concussion (at least in my mind), by steering clear of the “concussion = brain injury = brain damage” concept, which could be quite debilitating to a youth who has hit their head while playing a sport they love.

There are tons of potential ramifications and implications from being able to state that concussion is not necessarily an enduring brain injury. I may write more about this later, but it requires more thought.

The other very hopeful piece of this is that, by saying concussion is not always followed by brain injury, you’re opening a window to addressing concussions promptly so they do not turn into mild traumatic brain injuries. This, to me, is key. It not only makes sense of the two different kinds of injuries, but it also establishes that it may in fact be possible to treat the concussion to prevent it from becoming a more serious, long-term injury — the “gift” that keeps on giving. And by understanding concussion and brain injury this way, you also up the ante and really infuse the topic of prompt treatment with urgency. If acting promptly to address concussion makes it possible to avoid a lasting brain injury, then it’s in everyone’s best interest to become familiar with and properly trained in the recognition and treatment of concussion.

In this case, if mTBI is only present if concussion symptoms persist, and there’s no guarantee that concussion will result in a lasting brain injury, then prompt recognition and action may save the day.

Now, I’m still noodling over the idea that subconcussive impacts can seriously affect the brain over the long term, which Malcom Gladwell talked about in his article “Offensive Play“. But I am still hopeful. Because while subconcussive impacts may affect the brain, it could be that the damage takes place when no action is taken to address the injuries when they happen. Again, I’m not a doctor or a qualified medical professional, but it seems to me that if actively treating concussion helps with the really obvious issues — as the University at Buffalo has shown it does (albeit on a fairly limited scale) — then it might just help repair lesser damage done.

It might. I only wish I had the medical and scientific background and credentials to be able to speak as an expert on this. But apparently expertise is no guarantee of being able to help out, when it comes to TBI. The vast majority of experts haven’t had the wherewithall to state definitively what can actually be done about brain injuries, let alone recommend specific action that works, and there are thousands upon thousands, if not millions, of people suffering, day in and day out (along with their loved ones and co-workers) with the after-effects of concussion and mild traumatic brain injury.

So, somebody’s got to take the lead in finding a solution… Or at the very least think about finding one. The folks in Buffalo are up to wonderful work, and I can only hope that more folks have the gumption to take their lead and do something about this wretched hidden epidemic of ours.

Now, I’m off to address my own issues of the day.

All or nothing – for real

I have been looking at my notes from the past days, seeing what I’ve gotten accomplished, and what I haven’t.

There is a whole hell of a lot I have not gotten accomplished, that I have been promising myself I would. Some of the things I have not done are serious. They are job-related. Survival-related. Pay-related.

I cannot NOT do them. But that’s what I’ve been doing.

Not.

I’ve also been thinking about how long it took me to realize that my fall in 2004 had affected me the way it had. Some call it “denial.” Some call it a “cognitive blind spot.” I call it “not sinking in because I have so many other things to think about.” Things like stray distractions that come across my path that for some strange reason I cannot resist following. Like a mynah bird. Magpie me.

The really freaky thing is, I ‘got’ that my concussions as a kid had affected me tremendously, when I was young. The discipline problems. The meltdowns. The outbursts. The getting kicked out of class because I was too much of a handful and nobody knew what else to do with me. I also ‘got’ that the concussions of my childhood had affected my development and made it difficult for me to really function as a regular adult throughout most of my life. Certainly, I did a great impression on the surface, keeping a job (well, a series of jobs) and getting married and settling down and doing important things.

But nobody on the outside ever saw what went on inside. And very few people ever knew what living with me was really like.

The fact that my spouse has stood by me all these years is nothing short of a miracle.

Anyway, the reason I bring up my cluelessness about the impact of my fall in 2004, is that it’s the same kind of obliviousness that I now sense, around my work and the things I have let slide. It’s like I’ve been in this haze, this wandering-about fog, where my brain is busy thinking about everything except what it’s supposed to think about. And that happily distracted piece of me is quite content to not give much thought to my work.

But I must change this. Because focused attention is what helps restore my everyday function, one task at a time. I hate that I have to approach just about everything I do like some rehabilitation exercise, but I do. I just do. I have to make extra effort to get things started, and I have to make extra effort to stay on track, and I have to make extra effort to finish what I start.

I don’t like it. I hate it, in fact. But that’s how it is. That’s how it is with me.

So, I’ll make the extra effort.

And yes, I’ve decided to drop my shrink, once and for all, because they keep encouraging me to not work so hard, not be so hard on myself, not expect too much of myself.

That’s no way to recover. I need to recover, and not give up. I need to treat each and every day like a chance to recover some part of me I’ve lost — or am in danger of losing, if I don’t pay extra attention. I just can’t end up like the football players and other professional athletes who end up demented and/or dead long before their time, because they had no idea what they were doing to their brains, and they never found out what they could do to fix them — or probably ever realized that they needed to fix anything.

Enough of the blind spots. Enough of the denial. Enough of letting things slide and acting like that’s okay. I have to keep sharp. I don’t want to fade away. I don’t want to end up demented and dazed, because I was too dazed and/or lazy to put in the extra effort to keep my brain healthy and engaged.

I need to be healthy. I need to be engaged. Like the nuns in the Nun Study in “Aging With Grace” I need to keep disciplined and focused and not give in to my lazy streak… the streak in me and my broken brain that loves to wander around and follow whatever little distraction comes along. My brilliant mind knows better than to do that all the live-long day.

I must do better. Each and every day is an occupational therapy opportunity. I need to get back what I’ve lost – and make sure I don’t lose what I’ve worked so hard to get.

Crossing the river(s) when the bridge is washed out

I’ve been thinking a lot about how my brain developed over the course of my life, wondering if/how my early mtbi’s affected me.

I have to say, it’s a bit confounding. It’s hard to see where the differences between me and everybody else are just regular personality differences, and which ones could be related to my falls and accidents and the assault when I was eight. I’ve actually remembered more incidents, over the past few months, most notably an incident when I was in daycare as (I believe) a 4-year-old.

I don’t remember much — just climbing up some stairs when some of the older kids encouraged me to come play… then running and jumping a lot… and then lying on the ground, looking up at an older kid looking down at me… and one of the other kids running downstairs to tell the lady who watched us all that something was wrong… the lady coming at me, looming over me, checking me over… yelling at the big kids… lots and lots of yelling. I’m not sure if my parents ever found out that something happened, but I remember trying to get upstairs a few more times, but the lady who ran the place wouldn’t let me, which really made me mad! It was fun playing with the big kids. I didn’t want to be stuck downstairs with the “little peepies”. I wanted to run around and play with the big kids.

I think that I may have been kept downstairs because I was small for my age. A couple of my younger siblings were actually bigger than me, till I was about 12 years old and I started to grow. I was a little kid, so I think the lady who kept me probably told me to stay downstairs so I would be safe.

Clearly, that didn’t work. If memory serves — and there’s the distinct possibility that it doesn’t. At least, in this case. I was reading a book, lately, about how the brain doesn’t always store the information it’s exposed to. It’s not like a tape recorder or digicam. It doesn’t just take in everything it’s shown. And sometimes it “records” things that never happened. So, I could be wrong about this — yet more fiction about my life…

But I’ve felt for a long, long time that something bad happened to me when I was little — in day care — and I always had this faint memory lurking in the back of my mind. It’s always just been there, I just never paid any attention to it. But then, the other week, all of a sudden, I got this big Wham! of a hit of the sequence of events. Like all of a sudden, they “clicked” with me, and I could see it all happening in front of me, like it was yesterday.

Hmmmm…

I also remember falling down the stairs more than once when I was a kid — one time in particular, I went down and slid the whole way down the carpeted stairs, banging my head on them, one at a time. Similar to my fall in 2004, which anniversary is coming up soon, but when I was little, I hit just about all the stairs on my way down. I can still remember the feeling of my head bouncing off the stairs — bang-bang-bang-bang-bang-bang-bang-bang-bang-bang — and the dull fog that enveloped me when I got to the bottom.

Man, oh, man…

Well, anyway, I know that I have a long history of head traumas — plenty of them subconcussive, as I was a very rambunctious kid with a lot of energy but not quite as much balance… I was always biting off more than I could chew, energy and coordination-wise. So, I fell down a lot, hit my head a lot, ran into things a lot. I got banged up, bounced back up, and got back in the game. I was game. Totally. Always up for more. Just try and hold me back…

Sometimes, people were able to, like the lady who watched me when I was little. But most of the time, they weren’t.

I showed them. I could do it. I’d be up and at ’em in no time. Sure! I could do it!

Now, I’m dealing with the after-effects of my (sub)concussive childhood. And I’m wondering if the impacts over the years had a lot to do with how my brain developed. I have to say, although I have some complaints (who doesn’t, tho?) I’m pretty pleased with how flexible my thinking is, and how well I can perform, by and large. I tested very high in my neuropsych evaluation – high 90’s, percentile-wise. In my moments of self-satisfaction, I imagine I’m a genius or a savant of some kind. (Ha – yeah, right – when I figure out how to keep my study clean and get stuff done when I’m supposed to and make it to the train on time, then I’ll qualify). I have to say, though, I don’t have that many of those kinds of self-satisfied, self-congratulatory moments (I should be so lucky), so I try to savor the ones I have.

But anyway, back to the washed out bridge thing. I’ve heard head injury described as a shearing of fragile connections in the brain — the fine connectors get disconnected, sheared, frayed, and generally disrupted. Kind of like the frayed strings in my sweatpants when I was a kid and I wore my sweats to shreds. And the routes that normally connect the different parts of the brain end up having to re-route to find other ways to connect. And that’s where the fatigue comes from. And the constant restlessness. And the agitation. The brain has to work all the harder to do basic, regular stuff. It can do it, it just takes more effort. The ways that are usually used, the pathways that everybody else seems to have intact, don’t quite work the same for us.

So, we mtbi survivors have to find other ways to get down the neural pathways of our lives. We have to find other routes, when the highways and byways of our brains are washed out by the storms that take us by surprise. The traffic of our brains doesn’t stop — not as long as there is life in us. It just keeps coming and coming and going and going, and when it comes to a place in the road where a bridge used to be, or a paved portion is mising from a huge-ass virtual sinkhole that opened up under it, or there’s a huge fallen tree getting in the way, we — the traffic in our brains — have to find a different way of getting where we need to go.

And I think about all the times when I was a kid, feeling like I was so far behind, just struggling to keep up with what was going on around me, hassling and hassling and hassling over every little detail… all the while seeming to be fine, because I learned pretty early on to be stoic and not let on when I was having trouble — and anyway, I was a tough little kid who didn’t take shit from anyone — and I think about my brain and how hard it was working to put two and two together…

Man, I have to hand it to myself for not going crazy. Granted, I was a strange kid who went off on horrible tantrums, beat up on my siblings, and had all sorts of weird habits, like rubbing through the satin edge of my blanket because the feel of the satin between my fingers was the only thing that would calm me down enough at night to get to sleep… I won’t go into the hiding in dark corners and talking to myself for hours on end and tearing out clumps of my hair — that’s a tale for another time. But all that disturbance aside, I actually came out okay. And nobody I know seems to have noticed there was something really amiss with me.

Of course they didn’t. I learned a long time ago, to hide what goes in with me. In fact, it wasn’t until I realized I was several hundred thousand dollars poorer than I’d been three years before, and I couldn’t explain to myself exactly why or how or when that had happened, that I noticed there was something amiss with me.

Crazy.

Anyway, something must have worked, because here I am, relatively normal, as far as anyone else can tell, testing well, for the most part, in my evaluations, and able to hold down a job and advance my career. Maybe I’m just fooling myself and I’m in for a rude awakening, when I find out that I’m not nearly as competent as everyone else seems to think I am. Maybe I’ll crash and burn. Maybe I’ll self-destruct. I don’t plan to, and I don’t think I will, but you never know.

All I know is, all these years, whether because I’ve kept busy or just kept moving, I’ve been able to re-route my brain around lots of obstacles, and find other ways of getting where I need to go. I may have had all those falls and all those injuries, but if anyone is a testament to neuroplasticity, I am. I’m serious. All the crap that’s gone down in my life, and miraculously my brain has managed to adapt, grow, change, and not show up horribly deformed on my MRI or register more than slight abnormalities on my EEG. For all I’ve been through, for all the crap that’s been done to me, and the wrecks I’ve survived, I’m doing okay.

Even if the bridge is washed out in places, there’s plenty of territory to discover while I’m bushwhacking my way through the underbrush. And if I’ve learned anything from this life, it’s that if you just keep going and use your good sense and you don’t go out of your way to do genuinely stupid stuff, you can find your way back to a beaten path of some kind. It might not be the road you left, and it might not be the road you were looking for. But sometimes a detour is the best thing for us.

Just keep going.

What an amazing article on brain injury

Thank you Malcom Gladwell for this amazing piece – “Offensive Play

I really don’t have the words to say how much I appreciate this. As someone with friends who have both been boxers and who have played football, and who has sustained numerous concussions, myself, writing like this that reaches a mainstream audience is truly priceless.

Thank you Mr. Gladwell. From all of us.

Remembering how good it feels to move

Changing the cat’s litter box, last night, on a whim, I hoisted the 20-lb bag of litter and did 10 overhead presses, just for the feel of it. Pressing against the weight felt good, in a way I remembered from my youth. In high school, I was a thrower in track and field, and lifting heavy weights overhead was a regular part of our training.

To this day, I still have pretty well-developed upper body strength. It’s diminshed, over the past five years or so, since my fall down the stairs and my “decision” to quit going to the gym. But I still walk with a thrower’s posture — poised for action, and leading with my shoulders.

It feels good to move. I had forgotten that, over my years of post MTBI inactivity. I became intensely uncomfortable in public places, and I became almost agorophobic in ways. I also became a lot more sedentary, just sitting for hours, literally doing nothing. Strange, how that goes.

But in the past several months, since I started getting on the exercise bike and riding, I’ve rediscovered how good it feels to move. Just to exercise, to engage my muscles in motion. To feel the blood rushing through my veins, the breath quickening in my lungs. And sweat trickling down my torso — a feeling I had all but forgotten.

And when I spontaneously lifted that bag of litter over my head and did 10 quick presses, my muscles warmed with a welcome glow, and part of me remembered — I used to know how to do this. And I used to do it a lot.

It’s true. I did used to do it a lot. In the years before my fall in 2004, I was a regular at the gym, and the “extra” weight I carried was all muscle. My doctor would lecture me, when I got on the scales and they showed I was “over”, but when I rolled up my sleeve and flexed my bicep, they stopped complaining at me being 10 pounds “overweight”.

I haven’t seen that doctor in quite a few years. I’ve moved on. My new doctor has never seen me in peak physical condition, and they don’t know I’m capable of it.

But what nobody probably knows — or would guess from looking at me — is that my body responds extremely well to exercise, especially weight training. Perhaps it was my athletic youth that set the stage. Perhaps it’s just a genetic thing. My dad has always been lithe and athletic, and he’s pretty much kept in shape over the years, as his brothers and friends have all gone to pot. On my mom’s side, my grandfather is also wiry and fit, despite pushing 100 years of age. Now, the women on both sides of my family tend to be heavier, which is where I’ve been leaning. But as a kid, I always took after my dad’s looks and build, so I’m guessing (hoping) that once I get past this lumpish existence, I can restore at least some of that past grandeur. Not all of it, perhaps… no, wait — why not all of it? Why not go even farther? Why not get even more fit? When I was weight training regularly, I consciously held back from my workouts, not wanting to bulk up so much that I’d have to work like the dickens to maintain it over time. I know for a fact, I could have gotten even more fit, back then. Why not do it now?

Why not indeed?

Well, anyway, first things first — I need to ease into this, so I don’t injure myself right out of the gate. I’ll need to use lighter weights from the get-go, so my muscles can get re-acclimated to moving in that specialized way. I’ll need to make sure I do some light lifting on a regular basis, and ease into the heavier weights slowly but surely. And I’ll leave plenty of time for rest. If there’s one thing that knocks the stuffing out of weight-trainers and compromises the quality of their training, it’s lack of rest. And poor nutrition. In training, I’ll need to eat right — and have plenty of protein. Keep the carbs as complex as I can get them — but don’t eliminate them entirely. My brain needs to quality glucose. No sense in getting physically fit, if my brain suffers as a result!

Balance. It’s all about balance. And as a former thrower, I know all too well what improper balance can do to someone who’s handling very heavy weights. It’s a recipe for serious injury. I’ve already been injured — plenty of times. The last thing I need, is more.

So, onward and upward. Back to the movements. Back to the sensation. Back to the muscle and sweat and fitness.

Back…