Tomorrow the movie Concussion hits the theaters. Ironically, I won’t be able to go, thanks to debilitating overload from the holiday season, as well as having heightened problems with sensory stimulation, these days. It’s touch-and-go with my energy, as well as my tolerance for crowds. All I can say is, thank heavens I got all my shopping done by 5:30 last night.
Then again, I don’t feel as though I’m being 100% remiss in missing the movie on opening night. My entire life is pretty much run by concussion / mild TBI, and I’ve dedicated a big chunk of my life to not only successfully recovering from this nasty chronic condition, but also educating others about how they can do the same. It’s a daily vocation for me. It matters. And I started doing this back in 2008, so it’s not a new thing for me.
The way I see it, if this movie raises awareness and gets people thinking about this issue in more realistic terms, then maybe tomorrow is a “day off” for me — somebody else is doing heavy lifting in raising awareness about head injuries. And it’s Hollywood, no less. There’s a ton of press coming out about this — and my local PBS station is airing the Frontline special, “League of Denial” in advance of the Concussion movie release.
On the other hand, what kind of awareness are they raising?
Is it the kind that puts people into a panic and sends them into crisis-mode?
Is it the kind that raises the klaxon alarms of LAWSUIT! LAWSUIT! with school districts and colleges… that prompts parents to either refuse to let their kids play any more football, or plunge into a denial-driven heartfelt defense of football as a character-building exercise?
Is it the kind that causes kids to think they’re going to lose their minds and die early, if they hit their heads?
Is it yet one more public awareness campaign that further polarizes an already divided nation about our #1 most beloved sport?
My problem with this kind of awareness-raising, is that it’s so dire – that works against it, in my opinion. It can look like just so much Hollywood sensationalism and propaganda that paints a dismal picture for effect, while it may not actually follow up with any sort of balanced alternative view about what you can realistically do. It might freak everyone out, but how is it reassuring parents, teachers, kids, and everyone else in the mix that while the situation is serious, it’s not the end of the world?
It’s certainly the case that repeat head traumas in football (and other sports) can lead to a host of problematic issues, as well as CTE and premature death. It’s certainly the case that concussion — from any source — can lead to persistent physical, mental, functional, and behavioral problems . Most people recover, but some don’t. And not taking care of yourself after a concussion is a great way to help those symptoms persist.
But HOW do you take care of yourself? How do you do the things that your body needs, in order to get back on your feet and get on with your life? Even before that, how do you understand what’s going on with you and figure out the steps to take to deal with your issues? How do you even figure out the issues that you do have? How do you explain things to friends and family? And when does it make sense to worry? All these are basic, fundamental questions that come up — and unfortunately there’s not a specific set of guidelines to follow. Even the cases where there are recommendations, they can conflict. And given the amount of new research that comes out regularly, it’s hard to keep up.
The confounding problem with treating concussion is that you’re trying to serve a dynamic population with a wide variety of changing, very personal symptoms, whose needs may vary from case to case. Everyone’s situation is different, everyone’s treatment is a little different. And people need to follow through themselves — they can’t just take a pill or expect a doctor to sort it all out for them. How do you get enough information to people up front, so they take proper steps from the get-go… as well as understand what’s happening in their brain, so they’re not so frightened, disoriented, and intimidated?
How indeed? Because it’s important that this happens. I believe that poor care from the very start lays the groundwork for future problems. Not giving your brain enough rest and letting all the chemicals settle down, is a great way to unsettle your system and add stress to an already stressed system. Not taking time away from exertion — even amping it up, because that’s what your brain is telling you to do as it tries to recover from the flood of biochemicals that are unleashed when a brain is injured… well, that’s an excellent way to prolong your recovery, even set it back. It’s also a great way to get injured again. And again. And again. Because your coordination can be off, at the same time your body is telling you to go-go-go.
And meanwhile, the people around you don’t understand what’s going on with you, they may be entertained by your manic behavior, or they may be upset with you because you’re not up to doing the things you did before.
Personal experiences after concussion are as many and as varied as personalities, themselves. So, small wonder, there’s no truly consistent way of managing concussions, just yet.
I do think we will get there. But in the meantime, we’re being deluged with information about how life-threatening concussions are, how much they can mess with you, and how sinister the effects can be. It’s putting people on edge, there’s no doubt about it, and as a result, people are just … well, just plain scared. And/or they shut down the flow of information, because A) it’s too much for them to take, and B) they don’t know what to do about it.
I could go on, but I’m going to break, right now. I’ve written a little eBook about What You Need To Know After A Concussion. It’s free. It’s basic, but it’s got exactly the things I wish I’d known, when I got hit in the head all those times. I’m working on an extended version (that will be a paid version), to support this work — and also provide more value to people who want more in-depth discussion. But for those who just want a high-level overview, just to get their bearings, the eBook (download it here) provides at least something.
So, this Concussion movie really presents us with an opportunity to talk more about this issue in ways that are genuinely helpful. And I think it will fall to the community of concussion / TBI / ABI survivors to reassure a nervous populace that brain injury does NOT need to kill you, necessarily. Sometimes it does, sure. But it’s not a death sentence. Those of us who know better need to speak up — and I’m hoping that more of us will.
Broken Brain - Brilliant Mind 
The issue is money. The technology exists to make football safer. Rule changes can make football safer. A lot of time, it takes a scare to get people to pony up to do what they should. If the movie breaks the inertia, I’m all for it.
What we’re learning is that concussions in children are more damaging than they are in adults. According to one recent study, the effects of a concussion in a 10-year old can last for 2 years and affect cognitive abilities and learning for that time. That’s a lot for a child to sacrifice and could have a material impact on the child’s future — and its avoidable.
http://www.sciencedaily.com/releases/2015/12/151218130329.htm
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I’m so glad you wrote an eBook. After I write my comment, I’m going to look at it. A couple of comments on your post.
I’m so glad that you had the videos on your blog with the man who explains his experiences with concussion. I watched this relatively soon after my husband’s concussion and because of this knew that lifting any kind of weight would probably be bad for him. (This was after he had helped me move tons of boxes. I’m so upset about this. The hospital advised “no restrictions.”) There were many other great points that this man made that helped us in the initial stages.
I think that choosing a naturopath for a primary care physician after the concussion was a really good move. I was basically fed up with doctors who wouldn’t spend the time to listen and hear us out. But the naturopath had a whole-system approach that included nutrition, which most other doctors seem to overlook. Because of this, my husband was immediately put on fish oil and told to avoid sugar and other processed food. The more I read and the more I try this diet for myself, the more convinced I am that proper nutrition is extremely important. This is a very complicated issue. But at its core, I think it just makes sense to avoid pesticides (outside poisons) and avoid blood sugar spikes, and avoid false food. The rest is a muddle in my mind. But those things make sense. Getting Omega 3 fats is making sense too.
The movie Concussion may serve to oversimplify the “aftermath” of concussions. There are so many things that can happen after a brain injury. There isn’t just one condition that can arise after a concussion.
It is my sincere hope that this movie highlights how difficult our healthcare system is to navigate and how arrogant and self-centered typical Western doctors have become. It took us 6 months and 4 neurologists to arrive at a diagnosis for my husband. This makes it seem like a lot of people did a lot of work, but that is not the case. Except for one, each neurologist GLANCED at my husband’s records, (they did not spend any time or thought on this), they simply incorporated it into our one-on-one visit. The last neurologist didn’t even read the MRI report. I had read it, and translated it, about six times prior to going into the visit. I knew what it said and probably what it meant.
I would raise an issue and the neurologist would say: that’s not anywhere in this report and then I would read him the line where the information occurred.
At the end of my rope, I left the office and made a scene and recounted everything that had happened over the last six months in the visitors’ lounge.
I got a call the next day. He had reviewed the MRI. Instead of his first recommendation of a 12 month treatment plan and his haltingly arrogant attitude, he now had an attitude of sickening sympathy. Now he wants me to have my husband go immediately to see a neurosurgeon and been seen by a specialist in TBI a couple of hundred miles away. Now we have our diagnosis. I hope he’s wrong, but it’s a place to start. Maybe finally I will find people who know what they are doing, not just old men raking in the dough and not even preparing for their consultations with patients.
And by the way, I live in Portland, Oregon. If you have a brain injury and live here, save yourself some valuable time and shop elsewhere for help.
How can this be? How can doctors continue to get paid? What kind of crap is this that they treat patients like this? Think of the emotional state my husband is in right now. It is inhumane the way they treat patients, from the rapid inquisitions, to the distrustful attitude, to the lack of preparation before exams.
I left that last appointment wondering if there is a Better Business Bureau for doctors. The Medical Board? Was this doctor mad at us before we ever got there because we had been jumping from doctor to doctor? He questioned us extensively about this in our visit. The first neurologist said my husband had high blood pressure and sent us away.
At the last visit my husband’s blood pressure was 80 over 60. Almost alarmingly low. What if my husband had blindly followed this doctor’s recommendation and had taken those pills?
And now a surgeon. We went from “don’t worry” to “call a surgeon”?
My suggestion to anyone reading this is to not check your critical thinking skills at the door. Listen, take in the information, decide for yourself if it makes sense. It’s ok to fire a doctor who isn’t right for you. It’s scary but those who truly believe in “doing no harm” will not hold this against you. Those who are questionable might. So good, they will weed themselves out.
People at work tell me not to research on the Internet. I am not convinced this is true in the least. There is lots of great information on the Internet. You can use it to define terminology and to find a host of helpful information, such as this blog.
Watching those videos in the first few weeks of my husband’s injury gave us information that we desperately needed to not make things worse. They caught me up to speed and helped me understand how to adjust my attitude to help him.
What’s ahead for us? Bad things I am afraid, given the diagnosis. Do I trust this diagnosis? Not completely. From my independent research, it does make sense. The key points in my plan are proper hydration, good nutrition, plenty of rest, and exercise. I’m still reading. I’m still learning. I will not give up.
I have this idea of writing an open letter to a newspaper—maybe the editorial page. With the movie Concussion coming out, it might get picked up.
Specifically, to the writer of this blog, what do you think of this idea? Maybe you should write such a letter. You have a firm grasp of this issue and of the lousy medical care people in a mentally and an emotionally compromised state have to endure. Please consider this idea and please feel free to take it on yourself. Without you just happening to like one of my posts, I never would have found your blog and until I found your blog, I had not found those helpful videos, and I’m sure there is so much here that I haven’t seen yet. You are an eloquent writer. I have no doubt that you would produce a piece worthy of publication. If you need any back up from me, I would be happy to help. I think you should do this. Maybe you should see the movie and then write a reflective piece based on the perceptions of the movie and your own personal experiences. Maybe don’t “review” the movie, but instead use it as your hook and then get to your personal viewpoints.
Best wishes and many thanks!
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Thank you very much for writing – it was a great way for me to start my day. I’m sorry to hear about your husband’s difficulties (and your own, as well). I’m also sorry that your experiences are far from unique. And the 0-to-120 mph reaction of that neurologist is par for the course. I fault the medical system, because A) it produces doctors who are behaviorally and cognitively impaired due to stress, overwork, the constant deluge of fight-flight stress hormones in their systems, and B) the full-fledged doctors it produces are not permitted to render proper care, because insurance ties their hands, and they are expected/required to render care in brief stints of time. Obamacare is the least of our worries, when it comes to medical care in the USA — and I’m not a fan of that system. (Full disclosure: I’m not a fan of many systems, at all, so even if it were stellar, I still wouldn’t like it, probably.) As for care in Oregon — I think that care in many, many areas outside the major metropolitan regions is a crapshoot. The myth of the kindly country doctor who knows his stuff, is just that — a myth. In the course of my life, I have had many, many mild TBIs, and I never received proper care. Part of that is my age — when I was growing up in the 60s and 70s, there was NO awareness of TBI/concussion. Part of it is that it was a very rural farming area, where the attitude is — if it’s not bleeding, and it hasn’t killed you, and all your parts are still attached, you’re fine. You don’t need care. I trace it back to the needs of farming, where you couldn’t stop haying or harvesting because someone got clunked on the head by a piece of equipment. You had to keep on, or you’d lose the window of opportunity to do the work.
As for treatments, working with a naturopath is a brilliant idea. Taking care of the body is the first step in taking care of the brain. Of course, there are also the cognitive and behavioral issues to deal with, but if you don’t take care of the body, the brain will suffer — and as in my case, if you don’t deal with the physiology (my Vitamin D levels were way too low, and I had too many carbs in my diet, early on), then the benefits of all the brain training you do can be limited.
I wish there were more I could do. I am reluctant to write to the local paper, because I value my anonymity, and I’m concerned that if folks hear about me and my story in the mainstream press, they will follow up with a news story and start digging. I have a lot riding on my anonymity — I can lose my job if people find out I have a history of TBI, and I am the sole provider for my household. The idea of being jobless — and eventually homeless — puts a damper on my outreach. So, I stick with this blog and other social media. But thank you for your kind words and encouragement. I any case, there is so much press about the “Concussion” movie right now, there is likely a veritable army of highly qualified professionals ready to unleash a tidal wave of information and discussion into the public. It really is a great opportunity for raising awareness. How much of that is going to be productive, only time will tell.
But if just one person is helped by it, then I think that is good. As I’ve said, though, I’m concerned about the “backwash” (like the stuff in the bottom of the soda bottle) that will flow back on us. Sometimes, a lot of talk can be too much.
Anyway, thank you again for writing and have a lovely day. There are other resources out there in the Pacific Northwest – – Brain Injury Radio Network http://www.blogtalkradio.com/braininjuryradio – is out of the Spokane, WA area. It’s not exactly next door to Oregon, but at least it’s in your region. Also, you may want to check these out, they may help:
Give Back – TBI Family Therapy Guide (part 1) – https://brokenbrilliant.files.wordpress.com/2014/06/hepufam_section1.pdf
Give Back – TBI Family Therapy Guide (part 2) – https://brokenbrilliant.files.wordpress.com/2014/06/hepufam_section2.pdf
Give Back – TBI Family Therapy Guide (part 3) – https://brokenbrilliant.files.wordpress.com/2014/06/hepufam_section3.pdf
Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series – https://brokenbrilliant.files.wordpress.com/2010/12/models.pdf
Give Back – TBI Self-Therapy Guide – https://brokenbrilliant.files.wordpress.com/2014/03/self-therapy.pdf
Daily Experiences Journal (Wide) – Word Document – https://brokenbrilliant.files.wordpress.com/2008/10/daily_experiences_journal_wide.doc
60-day Headache Journal – https://brokenbrilliant.files.wordpress.com/2008/01/headache_journal_60-day.pdf
Good luck and keep going!
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After watching Concussion yesterday, it helped me see why there is little said within the brain injury community about the congressional investigation of the head injury rehabilitation industry in 1990. The industry wants that information buried so they can continue to exploit people with brain injuries today. At $1,200 a day and up for their services the brain injury industry is not motivated to change anything just like the NFL. What is sad is that people with brain injuries don’t seem to question anything the industry does just like NFL fans who don’t want to hear the truth about the NFL. Back in the day we took on the National Head Injury Foundation and the industry. We got a congressional investigation and the FBI raided and shut down New Medico. New Medico moved to Florida and became the Florida Institute of Neuro Rehabilitation (FINR). The only difference between what we did then and what is going on now is that people with brain injuries in leadership positions lining themselves with the industry by ignoring what we did and are now reinventing a brain injury history that leaves out the most important part. Believe me we had a robust advocacy group of people with brain injuries from all over the country. We weren’t afraid to speak up for what was wrong and weren’t used by a self-serving industry who only cares about the money it makes by exploiting the vulnerable people it serves.
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Wow – what a story. That’s incredible. Brain injury is the gift that keeps on giving, and I do not find it the least bit surprising that the biggest defenders of the game tend to be former participants themselves — the coaches and parents who once played and believe that it “builds character”. I personally believe that a lot of folks who are making decisions for kids may have a history of concussion and repeated sub-concussive hits, thus rendering them essentially incompetent, when it comes to making nuanced decisions. The gung-ho coaches trying to relive their glory days in high school are a big part of the problem. And they refuse to face up to it, because that might reveal their vulnerability — and their incompetence. Collusion, obfuscation, pride, prejudice, and a whole lot of money are causing a whole lot of harm.
Sigh.
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