I’m a big fan of Give Back Orlando’s great TBI Self-Therapy Information.
They have a great collection of info at their site, including;
Self-Therapy for Head Injury: Teaching Yourself to Prevent Head-Injured Moments
- Head-Injured Moment Analysis Form
- Day Planner Form
- Treatment Plan Form
Helping Your Family Member To Recover From A Head Injury
Head Injury Recovery in Real Life
What Makes it So Hard to Get Expert Head Injury Treatment
A Fairly Simple Introduction to How the Brain Works
Written for Survivors of Head Injuries and Their Families
Models of Exceptional Adaptation in Recovery After Traumatic Brian Injury: A Case Study
Evaluation of Cognitive Rehabilitation as a Treatment Paradigm
Successful Educational Re-Entry After Severe Traumatic Brain Injury: The Contribution of Cognitive Compensation Strategies
And other Recommended Reading Material
The best thing is, they are folks who know what this is like, what it’s about, and they have figured out how to deal with it effectively.
Check it out – it’s well worth the visit!
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May 15, 2009 at 7:01 pm
m
Glad Orlando is helpful for you – I think so too. I actually wrote Dr. Schultz and he replied to my comment.
I also continue to do advocacy on a state and national level. I am always looking at how to improve service delivery – including
Coordination of services – including non medical services such as employment and social services as well as between medical providers including non-tbi folks
Funding – how to cover the costs – and perhaps reduce the financial impact both on a national level (disability, healthcare, less tax income) and on a personal level (reduced income, personal struggle)
How the services are delivered – eg. what EXACTLY would you want from a cog rehab specialist, what do you hope to achieve. I am very interested in improving the model of care for mTBI as I believe it has largely been a modified version of severe TBI recovery models and there are some significant differences – it is NOT merely a question that a person with sever TBI moves to moderate stage and then mild stage in terms or recovery. There are very different treatments
Recovery in General – I also believe that many of the existing models of recovery do not encourage or enable survivors to optimally restore their lives and functioning. I think more emphasis should be on physical fitness, meditation and other CAM alternatives and less on meds. I also think that people may need to be challenged more, but in a positive and empowering way. This may even include moderate and severe tbi.
Education – improving understanding of tbi among physicians, therapist, educators, and the general public
The role of caregivers and family/friends – I think that this is important because it can influence the outcomes significantly but it can be very hard (as you have pointed out) on loved ones and associates to deal with tbi issues
Building better tools – including technology – to help folks with tbi. More data is needed, and perhaps better evaluation mechanisms. While existing neuropsychs are helpful the ‘real world’ is still far more complex.
And of course more research into what tbi is or is not
If you have in your experiences any suggestions on this – based on what you do, on what you have read or what you struggle with please speak out. You do have a lot to say and that is very valuable.
May 16, 2009 at 2:27 pm
brokenbrilliant
M -
Thanks for your words, and thanks for your work. We need all the advocates we can get at every level. I’m really glad you’re in a position to do this work. It’s important.
I do have some ideas about how to address the abysmal state of TBI (especially MTBI) diagnosis and treatment and rehabilitation in this country — and beyond. In my mind, much of the problems seem to be about information — quality, consistency, availability, and (most of all) trustworthiness.
Lookit — we have thousands up on thousands of people sustaining head injuries each year. Lots of them seek and receive medical treatment (for what it’s worth), while and lots and lots of them are under the radar because they never sought medical help, and if their injuries aren’t as tragic as Natasha Richardson’s, say, they may never even realize — till years later, like myself — that (m)TBI plays such a central role in many of their inexplicable issues.
There is no lack of numbers of people who have sustained TBIs. And there is no lack of experience — good and bad, effective and disastrous — in dealing with these injuries, in the short term and the long term. We have countless people who are highly functional, moderately functional, low-functioning, or completely disabled/debilitated due to head injuries. We also have tons of doctors floating around out there, plying their trade (again, with varying degrees of quality and integrity and success). We have therapists of all kinds working with people to rehab them. And as a species, we’re all quite fond of talking about ourselves, our experiences, our tales of victory and woe, and all the stuff we encounter each day of our lives.
So, what’s missing?
A common-sense, pragmatic, workable way for everyone to share their information. This is an information systems issue, at its most fundamental level. It’s an information access issue. It’s a matter of people who need knowledge and experience being completely cut off — for whatever reason — from the people who have the knowledge and experience they need.
And we are all suffering from it.
Makes no sense. No sense at all.
Because there are people out there in the world — like me — who specialize in designing information systems. We’re really good at what we do, we’ve been plying our trade in some high-stakes industries for a long time. We know what we’re doing well enough to shuttle lots and lots of money between different institutions, customers and companies, and we know how to do it reliably, safely, securely, and with efficiency in mind. I’m talking about folks in the financial services industry who have been responsible for the safe passage and storage of the lifeblood of our planet — money.
Now, I won’t go into the problems you have when the people on either end of the systems misuse the information they have. The money didn’t all disappear into thin air in our most recent economic crisis, because a machine screwed up. That was operator error on the part of the fund managers and bankers/lenders of the world. The information systems remain intact and as reliable as ever (provided that people who know what they’re doing, as opposed to some offshore newbie who’s just trying to fatten their resume with a big-name-brand employer for six months before they jump ship to their competitor — but that’s another problem for another thread of discussion).
My point is, the world is not lacking in people who know how to design and build information collection and sharing systems. We’ve got more than one team of folks who know how to build a Google. We know how to do it. We’ve done it. We’ve done it with info about money. We’ve done it with info about science. We’ve done it with info about law. We’ve done it with info about Brittney Spears and Paris Hilton and Sarah Beale. And we’re pretty good at it, if the popularity of Google and Facebook and MySpace and Twitter and Digg is anything to go by.
So, it seems to me that if we approach TBI — especially MTBI — as an information systems issue, we can solve at least some of the most glaring issues. We can actually do TBI education online, collect data about what works and what doesn’t with regard to rehabilitation, share TBI survivor experiences that let people know they’re not alone, and connect people in need to much-needed support/resources.
Now, granted, there are a lot of pitfalls around this, not least of which being the “intellectual property” territorialism of the medical establishment (which still refuses to enter the info-driven 21st century in countless ways — I recently worked at a multinational medical services firm, and I could hardly believe how resistant they were to basic technological advances, like a modern browser that isn’t full of security holes, like Internet Explorer 6). And one of the problems with connecting people and sharing information about medical issues is liability. I’ve heard plenty of stories about people not being able to get jobs, because someone found something they’d posted about themself online — and if someone were to run around and tell the rest of the world that they’ve sustained a TBI, even a mild one, it could really ruin their chances of getting decent work — and being able to restore their life to some semblance of real viability.
Medical information is tricky. But you know what? So is financial information. And people in information technology/systems have been dealing with strict confidentiality requirements for a long, long time. So, there’s no wizardry required there. Just prudence and common sense and truly anal retentive attention to customer privacy.
In truth, I must say I’m completely baffled as to why reliable TBI information is so hard to find and use. And verify. It’s not like we don’t have the means to get our heads and hands and hearts around it. If we avail ourselves of the assistive technologies we have at the ready, we could make some inroads. All it takes is prioritization, time, and funding to let people focus on it full-time. Oh, and people smart enough to build a system that can grow and keep going, even if/when it becomes wildly popular — so it doesn’t crash. And so that operating costs don’t require courting sponsors and underwriters like pharma companies and business entities with vested commercial interests that can drive the whole initiative off-course.
I know it could be done. I can feel it in my bones. And that’s something that speaks even louder than the logic of my mind.
May 20, 2009 at 2:58 pm
m
BB – Sorry it took so long to respond to your heartfelt and thoughtful comment. It was a good question and I wanted to give a meaningful answer, so I needed some time to put my own thoughts in order.
I think it is important to appreciate how ‘young’ the study of TBI is. It is only in the last 10-20 years that tools to study brain functioning on a very intimate level have been developed – and even now imaging tools that might detect microscopic tears are infrequently used. The neuropsych tests that are in use today were only developed recently, in the 1950’s. They started out as IQ tests, though they have been modified and expanded since then. However since their basis was IQ they do not have what is known as ecologic validity – a direct correlation to ‘real world’ activities – and that remains a problem for TBI survivors. There is increasing movement in trying to make that connection – some of the more current scientists, such as Damasio, have developed alternate approaches based on the understanding of our reliance on executive functioning skills – and the impact of executive dysfunction.
Despite what we now know are better numbers (and still an underestimation) we do not see TBI as a major population issue. Oliver Saks, who first promoted some of the more unusual symptomatic changes of brain trauma, did not publish his book until the 1970’s. For many folks that was the first sense that brain injury didn’t mean lying in a coma – but they do not connect it yet to someone like me or you.
In the science world and in view of the general population TBI is in the infant stage, very very new.
With the advent of Prozac and research more has been learned about how the brain works, the role of neurotransmitters, emotion, injury etc. Psychological illnesses such as schizophrenia, depression and bipolar disorder have come out of the closet (perhaps too much out of the closet but that is another issue). Like wise theories of autism have been completely re-written; once thought the result of bad mothers it is now understood as a spectrum disorder that is due to brain wiring and not mom. As we began study the brain more and make connections to behavior, emotional response and functionality other neurological diseases also received more attention; parkinsons, MS, Alzheimers, etc. In turn this furthered knowledge of mechanics of thought and the chemical components involved.
The brain is very very complex. Prior to the use of these tools the main study of the brain was observational, the root of classical psychoanalysis, wherein the unconscious components of humans set up yin/yang drives that compel action. This later morphed into behavioral psychology – the recognition that you could ‘train’ individuals to behaviors.
With the acceptance of neuroplasticity it has been established that we can indeed change the shape of our brain; that the behaviorists were not off the mark. But equally we have come to understand that emotional circumstances also shape our brain. And always, there is our underlying genetics. Today all these tenets are slowly converging, and frequently within the ream of TBI.
Still, there is not a true overarching idea, a single container (outside of our skulls) that integrates these various notions. Why does one person live through a 3 week coma and have fewer lasting issues than someone who experienced whiplash and a knock on the head with no LOC? Why is it that both TBI survivors and depressed individuals experience many similar symptoms; difficulty in reading, focus, loss of energy? Is there any similarity between autistic sensory sensitivity and the sensory overload of TBI? What is the relationship between emotion and cognition? Why get mad when you can’t hear?
Still, so much to learn.
But okay, those are the scientists and you are asking about the man in the street; the highly functional TBI survivor. Yes, the tools and the means are there. THe people are there. But that doesn’t mean we have reached action potential.
I see the current state of TBI knowledge and treatment as follows:
1. Many TBI survivors are struggling to have a semblance of a life, they have no energy or capacity to rally round the flag..
2. Many are undiagnosed and assume their issues are ‘psychological’ and so they don’t know which flag to rally round.
3. Because it has a behavioral and emotional overlay TBI has often been categorized as a mental health issue and treated as such. It is not but that has ultimately created no separate and distinct resources and funding and led us down a wrong alley.
4. Because of the populations where TBI is most frequently identified (young adult males and the elderly) there has been less interest. It has long been assumed that the elderly would develop cognitive problems no matter what, so it was seen as natural and not a result of injury. Now that we have a growing gray population that believe they can be fit and alert – there is more awareness that this is not ‘the natural course of events’. Also the war has brought more attention to TBI which is known as the signature injury of the war. Even the obsessive nature of ‘helicopter parents’ has drawn attention; they are more alert to changes in behavior, injury etc to their children and so they encourage research into sports concussions etc. So the social/cultural phenomena are finally beginning to gel.
5. Up till now, behavioral issues, such as lack of focus, have also fallen into the realm of psychology – thus kids who have trouble with focus wree seen as ADHD and treated as such. While TBI folks MAY use drugs such as Ritalin to help with focus issues there is much more involved and other approaches are needed. It may be that many ADHD kids are really TBI kids. But the Ritalin helped and big Pharm was happy. That may have prevented us from seeing the root cause of the problem.
6. The healthcare industry is not collaborative by nature. TBI requires a collaborative approach, individuals from various specialties, cooperation with general practitioners – as well as interaction with community services. The mechanism for this type of collaboration has not been implemented. One of the areas that I am working on is how to build that collaboration. Unfortunately the financial reimbursement structure of healthcare does not support such a model. I believe it will take a long time before that will change.
7. I also have a technology background and I appreciate your comments about the need for collective knowledge. I am also working on that (none of this gets me an income however). But I am not alone, many others are too – trying to pool knowledge. I seek to build a community of practice with a shared knowledge base. There isn’t much money towards this because much of the knowledge is not fancy stuff – it’s homespun approaches, basic stuff. – and rather dull – schedules, planning, writing in notebooks. Palm pilots etc make it more whiz bang but in the end it’s just sensible Mary Poppins stuff. That doesn’t mean its not valuable – it is – and very much so. It’s just not shiny and glittery. But of course the tools are there to share information – and we have begun to do so – with blogs and websites and publications. With an emerging collaborative culture using technology this may quickly develop into a solidified resource for TBI.
I do think more education is needed to capture a better picture of TBI. So many people are not identified – one of the advocacy projects I worked on presented the need for creating a database of even suspected TBI individuals in order to understand how big this problem is and prevent the wrong treatment.
8. While much of this is an information issue the kind of information and the method does not support ‘studies’ very well. It’s anecdotal and therefore ‘unproven’. It’s not fast, nor easy, it’s not a pill or a machine and it may not be factual in a scientific sense. Just as it’s hard to predict how pronounced the effect of any injury will be on a person its hard to predict how effective any strategy will be. What doesn’t work is however jumping from one approach to another quickly.
In many ways the art of rehab (and I believe this is what Orlando says) is nothing more than what the ancient Greeks said ‘we are what we do, excellence is a habit’. Rehab is habit, doing something that doesn’t feel smooth, being done over and over and over till it gets smooth again. Our brains find ‘pleasure’ in the willy-nilly (perhaps this is the fondness of the human being for drugs) but, once habituated, our brains find a different pleasure, maybe stronger, in order. Maybe in the end Freud was right, it’s really all about this – the battle between ego and id on a cellular scale.
9. It is also true that at this point in time there isn’t any obvious way to make a lot of money off of TBI survivors (outside of those computerized cognitive brain builders they sell to avoid Alzheimers). There aren’t any ‘TBI drugs’ – the meds that are used are used for symptoms not for the problem. Furthermore many TBI folks are injured, can’t work etc – so they don’t have a lot of disposable income. As well, the populations with the greatest number of injuries are young men, the elderly and soldiers – none of who are usually significantly wealthy. So there hasn’t been a market for an ultimate device, method, technology etc. Some of the more novel and technologically based approaches include:
Cognitive Prosthetics – http://www.brain-rehab.com/
TCNL – http://tcnl.med.wisc.edu/home.php
PEAT – http://www.brainaid.com/
10. Up till now TBI has been seen as a trauma that puts those individuals out of the playing field – brain damaged meant incapacitated. With the awareness of mTBI and the understanding of brain functioning and recovery (including neuroplasticity and neuro-regeneratin) it is becoming apparent that brain damaged individuals think AND vote. Better rehab approaches have come of this. But many of the models are still based on severe TBI, and on an assumption of significant cognitive limitation – NOT obstacles to overcome but absolute deficits from which one cannot recover or work around. This will likely change and probably rapidly in the next few years with more mTBI awareness.
11. Most significantly in my opinion – there hasn’t been a true ‘grass roots’ movement about TBI; no hero, no movie star figurehead. Pediatric cancer, breast cancer, even HIV and depression have had ‘star’ power. However I think that more recently there has been an increase awareness and desire to reach out and make changes – a movement powered by survivors. These folks are putting their heads together to give answers and provide support and attention. Your blog is an example of this. There are also more and more smaller, local organizations in each state to support TBI survivors, they coordinate with the BIAA.. Some of these spring out of mental health, others come from mental retardation organizations or developmental disabilities groups, some are independent. Right now we need to have a voice, a loud voice. We need to put numbers on this – the lost jobs, productivity of TBI survivors who don’t get support as well as the overhead cost for perpetuating their helplessness.
12. As a final note I think that the overall neuroscience picture will change. Just as there has come to be an understanding about Autism spectrum we will see a bigger understanding about cognition & emotions in general. A combination of learning theory, psychology, philosophy, neuroscience etc could hopefully lead to a point where we do not see the world in terms of abnormality/normality so much but rather in terms of productivity, quality of life, life satisfaction, capacity to form human relationships and to work, ability to laugh, create, etc. It is my hope that if we think like this we will give human dignity to a wide range of individuals who are currently disenfranchised by societal expectations of ‘norm’ . Temple Grandin broke a huge barrier for the autistic – and in doing so I believe she taught us to drop assumptions and rethink our values.
13. In the end my friend the world has come to use economics as a value system. Thus the smallest number of folks in this world drive the decisions for the majority. If you have 50K in assets (not savings but assets) you are in the top 10% of economically wealthy in the world. More than 50% of the world lives on less than 2$ a day. When it comes time to where we put our money and our effort much of it is to further the wants/needs of that top 10%, even if it is at the cost of more than 50% of the world population. Ours is a view that places the wants of the individual over the welfare of the community. One of the biggest shocks of my adult life was that no one, I mean no one, cared if I, a willing and able and capable resource, was wasted.
Change is slow and hard won, the disenfranchised have only their voice – and perhaps, as an extension of that, the power of technology if they learn to use it well.
Remember, you too are an advocate and are part of this movement. It is difficult to make progress, I do not have the financial means or time to dedicate much – my life is literally at stake – but then that is true either way.
May 21, 2009 at 1:36 am
brokenbrilliant
Well, then, seeing as we’re “early to the party” of (M)TBI research and analysis, it seems to me that we may be very well-positioned to make some positive inroads, encourage certain types of agenda-setting, and get a toehold in at the ground floor, if you will.
I do see a lot of opportunity, here. Gradual progress, yes. Steady progress, yes. But let’s make progress, if only in our own immediate sphere.
May 21, 2009 at 2:33 am
m
I don’t know if we are early to the party or if it’s been going on long enough for some things to happen – perhaps it’s just a very disorganized party with competing interests.
I do believe there is progress – as I said your blog is progress, Orlando is progress (though I do have some questions there), some of the changes I have seen in funding and government is progress, the recognition by the VA of the value of Cog Rehab, the work of many many researchers on TBI (by the by check out the Dana Institute) and the efforts of the Brain Injury Association of America (did you know that March is Neuroscience month?) – all progress.
And I have seen the growth of the grass roots movement, the collective knowledge, the stories shared, I have worked with many many folks, regular folks, parents, survivors, providers, who want to see change, who want to make change.
We are progress.