The Concussion Blog can tell you.
Author: brokenbrilliant
I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all. View all posts by brokenbrilliant
Broken Brain - Brilliant Mind 
The article has some good points – to add to this –
Concussion is not alway obvious – you don’t have to lose consciousness or even feel like you had a concussion. That’s whats really scary about the sports stuff – the things that are part of the regular game can cause injury.
The other issue is this – hard to tell who will have a lasting effect. Some folks can take a lot of bell-ringing with no apparent cognitive impact (that can be discerned) – other folks get completely spun around with ‘minor’ injuries. A concussion is a type of brain injury but it is not considered tbi – a tbi is a LASTING injury – one where the cognitive impacts extend beyond 6 months. Unfortunately we don’t have a good grasp of that either – if you are a mental fastball hitter and an injury makes you 30 points less on the IQ scale (which is what neuropsych tests are) then you really feel the impact – even if you are ‘normal’. The first 6 months post injury (for a ‘lasting injury’) is considered post concussive syndrome – that is it is injury and significant but may still heal fully. Usually if there is injury past 6 months the person is in for the long haul. Second injury during the 6 month period can be devastating.
More later in response to several previous posts.
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m-
Thanks for adding to this. These are very important points.
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m- those are very good observations, I tried to explain that in that article, but I appreciate the highlights…
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Dustin –
I reread your article and you do touch on this – good blog !
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BB –
This is sort of a combined response to several posts – I am breaking it into several posts for easier reading.
1. Impulsiveness.
The constellation of behaviors you describe, including impulsiveness are part of an overall attention deficit disorder. However, regardless of what you call it, like many things in BI ,this behavior is made up of numerous subtle interacting functions and there are different way to break this down and address it.
First however, I want to expand on something that you mentioned. There are two processes to rehab or rebuild; 1) restoring a function and 2) compensating for a function – neither is a magic wand however. Early on one tries to perform more of the restore, of course depending on injury and other conditions. Restore doesn’t necessarily mean generate new neurons – it means retraining your brain to function a certain way. As we grow up we are training our brains – educational systems, parenting, society – all these things inform, through repeated messages and structures, our cognitive/behavioral self. Restore is re-training our brain to work in a similar fashion as before. Compensation is developing a workaround – though you still have to train your brain to USE the workaround.
The simplest example of these two approaches is memory – writing things down is a perfectly reasonable compensation method. Some folks grow up and don’t have the greatest memory and so they develop the habit and skill to write things down and use that tool. Other folks have great memories. As we age we all get more junk and less capacity with memory so writing things down may become more common.
But a person can train themselves to improve their memory – even a tbi survivor to improve memory. But it takes a lot of work – a lot of repeated, dull, work and you have to find the write mechanism that works for you (of course there are some injuries that are very extensive and would prohibit even this). And it can take a lot of time.
Thus there is an ability to restore certain cognitive processes– BUT – each person has to decide if its worth it. That’s not defeatist it’s sensible. In some cases the work spent on trying to improve a memory slightly will not prove to matter much. In other cases it may help a person function professionally. Each person needs to decide those factors. Ultimately the more you use a skill the better you will likely get at it.
I also believe that many of these issues need very fine tuned work to address them. Memory, for example is very very often about attention and not simply a function of our memory ability. Yes, we think we are paying attention but, especially in mtbi where so much of your brain is functioning ‘as always’ that’s the wiley coyote causing havoc and self-deception – we aren’t really focused, we are skimming the surface, mentally multi-tasking, distracted, etc but because we think that’s normal we don’t ‘notice’. And so when we have to recall what someone said we are surprised – we don’t remember AT ALL ! And yes, it’s because we didn’t pay attention – though we thought we WERE paying attention.
And then sometimes a cigar is just a cigar – there are some patterns that I simply fail to remember – I am SURE that I could develop ways to remember them, but I don’t. I think this would have been true even if I never had a tbi too.
Okay, now to get our attention back to attention…….
Our brains work in patterns and once a pattern is formed it becomes a kind autopilot response. Those patterns are also cemented with emotional context – the greater emotional weight (fear is especially strong, pleasure less so with some exceptions) the more likely we are to respond from autopilot. Indeed the emotional glue aspect is what makes it is so hard to change behaviors – we have this neat response worked out that served a need or was connected with a strong emotion and so with certain triggers our brain reacts in this familiar way.
As a safety mechanism our brain also does a last millisecond double-check to make sure we made correct assumptions. Our brains are also constantly filtering the environment and making note of things (hey, is that a Stegosaurus moving in the forest over there while I am having lunch?) – but hopefully ignoring irrelevant data and filtering out internal thoughts or internally driven behaviors that are not appropriate. Iin brain injury both of these safety mechanisms for double checking become askew (perhaps due to slower processing) and so impulse gets acted upon and extraneous data gets its place in line. Our brains skip the cognitive double checking that is needed for auto-response situations and leave the door unattended for random thought actions to enter.
Because BI effects sensory input and filtering we can become very scattered in our approach – so we can be working on something and a bird tweets and we get up to look at the bird and then we see weeds in the yard and soon we are outside planting a garden ….Hard to concentrate when you can have thoughts interrupted by anything in the environment. Thus the BI survivor has a hard time with both internal thought/action control and external/action response.
Other factors also play into this – for example difficulty with maintaining related thoughts or visualizing a big picture can make it hard to stay on track, if you can’t see how things make sense as part of a single idea or effort then it’s just a lot of loose strings of data, like reading a book written by Getrude Stein, there is no plot, nothing to connect it all and keep you going.
Add to this other common complaints about apathy, motivation, fatigue – and one can see why it’s hard for survivors to achieve a lot of goals and why they experience a lot of frustration. Cognitive fatigue is often misperceived as physical fatigue. One can ‘push through’ physical fatigue if you are not doing anything physically exerting. But push through cognitive fatigue and you pay the price with mistakes and confusion.
And of course, on top of that are lack of exercise (leading to restlessness), poor diet (high in refined carbs and sugars), stimulants (caffeine and energy drinks) and a constantly endlessly stimulating environment that never stops. (More about that in a moment).
Solutions to this?
To address focus there are a variety of compensatory tools that can help. I find a smart phone is very useful – I keep all my to do lists there – work and personal. Since I can carry the phone it works well – no more loose papers, sticky notes or cryptic messages on napkins. It does take effort to get into the habit of using it however. Also I have found that the act of writing something down helps me remember – but not so when tapping a note so I lose something in the process.
Notebooks also work well and reinforce by the physical memory (which is always stronger) of actually writing. I preferred composition books so I wouldn’t tear out the pages (because then I get scattered pieces of paper again) – the idea for me is ONE place for all my info. There are also specialty notebooks that have pages you can take out and then put back and those can be organized individually.
Lists are good but as you pointed out overwhelm can be a problem if you see a lot of stuff on a list. My lists are lonnnnnng. Limit the days effort to one or two things. Break big tasks down into smaller goals and do a little something every day. Instead of cleaning your house once a month, clean one THING every day (dust a table for two minutes, water one plant, clean one shelf in the fridge). It may be less emotionally satisfying at first but its easier to manage. In time it will mean your house is always clean – or nearly so and that’s good enough.
Cues- such as leaving the laundry basket in the middle of the room or taping that days goals on every mirror – are also good ways of keeping things in your thoughts. Of course I can ignore anything…..
For focus I have had some success with hemi-synch recordings which adjust frequency of sound that you hear. You have to wear headphones and you can’t pay attention to the music but I think it helps. Maybe just because it blocks everything else out. Some folks are too sound sensitive to tolerate this – I was for many years but now I seem to be able to.
Routines too are helpful – even if at first they don’t seem to be. They train you to do certain activities at certain times – sleep, exercise, think, plan, etc. It may take a while but eventually your brain will get with the program. On the other hand some folks say that if you are stuck with a cognitive task switch off to a physical or mundane one. Can’t write that paper, then acknowledge it and give yourself a 30 minute ‘break’ to delete old emails.
It’s important to examine what areas give you trouble and to identify what you can do. For example – can you sit in a meeting/conversation/lecture etc for 15 minutes and give it your FULL attention? Practice doing that – when your mind stars to wander call it back. Try to extend it to a ½ hour of attention, then an hour, then 2. After that well….You CAN improve this, but its hard and slow and frustrating. There are set-backs, but over time you can learn to keep focused.
As you have mentioned regular and consistent physical activity is essential. Eating right – sugar, alcohol, caffeine – all can wreck havoc on your thinking and make you overtired so that you can’t function well. Sleep is critical – as you know. Most BI folks don’t have the cognitive reserve to push themselves on a few hours of sleep several days in a row without paying a price. I find that having cognitive vacation days is necessary – to just not have a thought.
However I think one of the key elements here is that our environment is geared towards massive amounts of data input, multi-tasking, sensory overload (color, sound, motion) – we are always stimulated, always trying to do more than one thing. How do we relax? We watch tv or go to a move – with lots of action, sound etc. Now – instead of writing an essay we ‘tweet’ – short, sweet, the immediate thought and not a focused cohesive concept. Caffeine drinks are selling like hotcakes – endless production is expected at work. And what it the number one complaint to docs – fatigue.
NO ONE’s brain – tbi or no – is managing well in that sort of environment, distraction is epidemic. All this effort is stressful for a brain, especially one that is injured. These problems are so endemic in our high stimulus, multi-tasking world that there is a program you can buy for facebook that locks you out of facebook for pre-determined periods of time. You set it for 30 minutes and you cannot get into facebook for the next 30 minutes – no way around it.
So our BI brains with reduction in filtering and focus really suffer – and it is necessary to make a conscious effort to mitigate that.
I continue to believe that meditation is very important and over the long run can make a huge difference. Meditation is ultimate the training skill of saying to your mind, not now, we can think about that busy thought later; it teaches you how to get your wandering mind back – it’s about not thinking. This gives your brain a change to catch its breath. Study after study has shown it is beneficial, reduces Alzheimers risk, calms etc. But it’s hard, boring, and takes a long time. Few people want to dedicate 20 or 30 minutes a day to do nothing when they feel they are behind in doing all their somethings. I struggle with it all the time – I do NOT regularly meditate – even though I know when I do I feel better. But I keep working towards it.
But anything we can do to teach ourselves focus is valuable. Even in little ways – when you ride the bike you read – but you are multi-tasking and stressing you brain, teaching it to divide attention rather than focus. I know – I like to read on a stationary bike too – there isn’t time to do it otherwise but more and more now I am working towards increasing the time I spend NOT reading, not thinking, just exercising. When I run I can think about ‘stuff’ for half the run, the last half I try to immerse myself in the experience only. When you talk on the phone don’t do anything else, focus on the conversation. In as many everyday tasks as possible train yourself to give your attention to the task at hand. Think about it – when little kids are learning they are absorbed in their activity, they ignore other things. We don’t ask them to ride their bikes AND learn to read at the same time. These problems are so endemic in our high stimulus, multi-tasking world that there is a program you can buy for facebook that locks you out of facebook for pre-determined periods of time. You set it for 30 minutes and you cannot get into facebook for the next 30 minutes –no way around it.
Pay attention to your needs – I have found that after several days of intense cognitive activity I am exhausted, I mean all I want is to lie stll, sleep, and do nothing. Just as you need complete rest after a concussion I need periodic no think/no do days. I feel lazy – but I have come to accept that I MUST have this. When we don’t give our brains a cognitive break we become fatigued, our impulse control lessons and we make more mistakes. Sometimes it’s not sleep we need but calm and quiet focus. Yes, I know mediation and this sort of focus feels like we are wasting time but it is the most valuable time you can spend – it really is very important and it might be fair to say that the harder it is to maintain this focus the more important it is to do.
And of course as you said, it’s important to not judge yourself, to not penalize yourself.. I think a lot of BI survivors feel guilt, shame, and a great compulsion to over do (perhaps as a part of their injury but also because they hate feeling impaired). You have to watch out for that always. Rebuilding is step by step.
But there is still another aspect of this that bears discussion.
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2. Psychological factors.
In America (and perhaps most places) we tend to view psychological issues as ‘bad’ and while there is much lip service to respecting mental illness as an illness like diabetes or an ulcer the truth is that mental illness is still deeply shrouded in stigma and shame and is not understood. Even worse our medical community continues to capitalize on mental illness through a heavy handed pharmaceutical approach and the ridiculous standards of the DSM-V which supports that pathologizing of emotions to a degree that is absurd. All this despite the fact that it is likely that 80% of the population would – by definition – demonstrate some degree of ‘mental illness’, that emotional response and physical injury/illness/trauma are clearly linked, and that this mistreatment and lack of acceptance actually costs our country far more in productivity and capability than any burden from such an illness.
It is normal to be abnormal at times; it is normal to experience a reaction to negative environments, to living with pain, to struggling to deal with a world that is hard to manage cognitively. Anger, frustration, despair – that is normal. We all have our experiences and reactions and it is the healthy individual who can self-examine and reflect in an honest and non-self judgmental way. We all also have images of ourselves, a story of who we thing we are and those images in turn will often have a lot to say about our life’s direction and outcomes.
Relative to that its worth considering if ‘overdoing it’ and impulsiveness are IN PART a normal part of tbi recovery that suggests you are healing and with the right support you can learn from those responses and can move forward in a positive way.
And in many cases it’s probably accurate to say some of ones behavior almost certainly informed by hildhood experiences and relations ships growing up (which were shaped in part by TBI). These experience become embedded in our psycho/cognitive makeup and create our patterns of behavior and response. They become the story of we tell ourselves of who we are, the background music that often drives the responses and allows us to ‘set ourselves up’ for repeating patterns that are familiar and known – even if they are not in our best self interest and even without our conscious recognition of this. And those behaviors exist outside of tbi – but are made perhaps more predominant by tbi.
This isn’t saying TBI doesn’t have an impact in a concrete and physiological way and it is certainly not saying that mental illness and TBI are the same thing. But it does say that there is a psychological component to TBI that shares some closet space. In the background of your story you may still be repeating a deeply held belief that you are a f-up and incompetent, a loser, a ‘less than’ – and you scramble like crazy to refute that. So you push too hard, overdo, and then you DO make mistakes and somewhere that becomes ‘proof’ – which you then fight desperately hard to disprove by overdoing it and pushing too hard again.
I had issues before my BI and I have them after – and indeed they are compounded by the BI. If I had minor attention issues before I could compensate with my speed of processing and ability to multi-task. Indeed, without consciously realizing that I became vested in that image of who I was. Now with less ability to multi-task and a slower speed of processing my ‘sloppy’ attentional issues can be more problematic (not huge but certainly they are felt more). The part of me that identified with being able to spin on a dime isn’t listening to the part of me that says I have to pay attention and be here now. And spinning on a dime is part of the story I told myself.
Some of that story may also be negative; some of my actions (to be honest) may have been ways that I kept myself from truly challenging myself and being all I could be, even at great personal cost. And that had nothing to do with brain injury – BUT after brain injury I had to come to make a choice – to I keep telling myself that story or do I create a different story – one that says I am good, worthy, capable etc.
This ‘psychological’ component is a real part of us and becomes entwined with our tbi issues. And it is made further complex because we react to our tbi issues in turn from who we think we are. It takes a regular effort to tell ourselves a new story, to create a different premise of the kind of person we are. In a cognitive behavioral approach this means literally telling ourselves, throughout the day, every day, the story of who we are – e.g. I am a smart, capable person who is creative , tenacious and generous. That doesn’t mean we don’t make mistakes, or that we end up rich and famous, or that our lives are ‘perfect’ – but it means that we are always open to improving our lives, to learning from our mistakes, to stepping outside of ourselves and helping others. In many ways I think your blog acts as this kind of mantra for you.
As a side note when you look at your nephews you do not see all that they have yet to go through. It’s good that they may have avoided some aspect of difficulty that you have experienced but in no way does that make your life ‘less’. In my advocacy work I often come across folks with very tragic stories, people in their prime who have had severe and lasting bi’s with little likelihood of recovery. Although I have faced many many struggles in my own process I realize how fortunate I am. There is no comparison between my life and another’s, I have many gifts that others do not, I have many hardships that others do not. Take heart that you were a positive influence in your nephews lives and see that as perhaps one of the great many skills that you have to provide. You could not have done that without having learned about struggle yourself.
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3. Health Care
The issue with Rep Giffords care is simple – Tricare has denied cognitive therapy for troops yet Rep Gifford will get personalized cog therapy FOR THE REST OF HER LIFE. Rebuilding is a slow process, intense early intervention can make a huge difference down the road, and regular support and guidance can mean a vastly different life experience. That is part of the frustration that BI survivors feel – even if they have insurance their coverage is maybe 6 months and few have access to personalized care, empowered care, a supportive environment etc. Most rehab programs are not designed with empowerment in mind. Truth is that people can do some of the cognitive rehab on their own BUT it needs to be tailored to their specific issues and they need to be guided and often to have someone who will oversee it to insure that it is kept up. Rehab is hard, people don’t want to do it. When I push myself cognitively to rebuild a skill it hurts, literally I feel the strain my brain makes and boy does it protest. Give me cartoons it shouts – but don’t make me learn how to memorize, pay attention, keep focused, stay on track etc.
Rehab should be about transitional recovery skills and processes. Furthermore think how significant your neuropsych is in your own rehab – these individuals are the reality check, and guide that many TBI folk need, especially if they want to return to fully productive and self-sufficient lives. But such services are not available to many folks – and certainly not after a year or at most 2.
I also get frustrated with health care in general. Every health care issue I have is potentially tied into my BI but none of my providers knows anything about that. So the burden of trying to put it all together is mine. And that’s hard for a lot of folks to do. I don’t want a doc to give me a magic pill – but I do want them to help me determine how (and if) my BI plays into issues – especially things like fatigue and pain – but even in other things – BI folks have higher incidences of other illnesses (the relationship is not clear why). Almost no doc I have spoken to in the past few years has spent ANY time talking to me about my injury, my progress, my perspective on my health issues. Indeed few of them even touch me in an exam – mostly they order tests and base their evaluation on that. I agree that one should be responsible for one’s own life but part of that is a change from the paternalistic nature of healthcare to one of empowering the patient/client, of transferring skills and knowledge and then supporting the execution.
I have noted in myself various stages of recovery – some techniques and approaches work best at certain stages – I may not be able, at first, to train myself to give 15 minutes of attention to a lecture when I can’t remember a thought from moments before. I may need guidance in self-acceptance so that I don’t judge myself and fall into despair. Most of us do not have the communities, and family/friends support network that will help us through the rough spots – and there are plenty of rough spots. And most of us do not have employers or work situations which will tolerate our mistakes and struggles as we relearn how to be highly functional again. Oft times the pressure to be ‘whole’ again is so great that it causes further problems – because I am fearful I might forget something I interrupt others and ramble in conversation and so I need to re-develop my social skills and learn to trust myself again – trust that I will not forget because I have learned how to hold important things in memory or I have learned a compensation approach. This is what I would like to see the rehab process provide – tools, support, empowerment, guidance, feedback.
But again, we are the lucky ones – we can talk, write, walk, feed ourselves, drive, dress, work, etc. Many have serious limitations and even greater cognitive struggles – and there is so little knowledge and available resources and society as a whole wants to see them as non-contributors. Some of our representatives in government have openly stated this.
Change is a process, a long, slow and hard process. If you want to make a change you have to really be certain that you want it because it won’t happen magically. Even if we have systems in place to fix things there are few to support a persons own efforts – and that is part of what makes this such a difficult journey.
As an aside note – I struggle constantly with all these issues, I have to remind myself of these things all the time, I fall back into patterns that don’t help and even hurt me, I feel guilt, shame and react to them instead of reacting to what needs to be done. For every 5 steps forward it feels I take 4.5 back – but I am still moving forward, in slow small tiny increments. I have HUGE doubts much of the time. And often I see how much more work needs to be done and I despair.
But the goal here isn’t a point of arrival, it isn’t about becoming me again. I am me right now. It’s about exploring me, about making choices, about enjoying and savoring life, this life, the life I have right now. It’s about valuing myself, about not being a victim, not being helpless, but not living in denial either. When I can appreciate those things I do better, when I buy into the glossy magazine idea of the successful life I fall.
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m – perhaps BB can repost your comments into a blog, or I can do the same… Those are very good words…
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Sounds good. As soon as I get my computer up and running smoothly again, I’ll do that.
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