Change. It’s up to me. It’s what I do.

Yes, it does

So, it’s a beautiful day. Unfortunately, I only got about 6 hours of sleep last night. I stayed up too late and woke up too early. I’ll remedy that later with a long nap. That’s the plan, anyway.

I’ve got a call in a little bit with a Feuerstein Method practitioner, who helps people rewire their brains with specific combinations of exercises, along with a highly interactive approach. They live relatively close to me. Same part of the state. So maybe I can meet with them.

I’ve been reading up on the Feuerstein Method, and it’s very much in agreement with what I believe about the human brain, the human system, and all the latent abilities we have — just waiting for us to bring them forth. A great in-depth overview of the method’s main assessment “device” can be read here: http://acd.icelp.info/workshops/theoretical-material/lpad.aspx. It’s a lot to take in and digest, but the bottom line is, it’s a system that is based on a “belief system that holds individuals to be modifiable, as well as amenable to registering and detecting adaptive changes.

And that works for me.

Basically, the bottom line is that the human system is built for change, and the Feuerstein Method harnesses that, and then directs it by 1) understanding how a person learns, as well as the degree to which they are able to adapt, and 2) using a highly interactive “mediation” approach between the helper and the person who’s seeking help. It’s mutually interactive approach which makes all the sense in the world to me.

And I wish I’d found it sooner. Something keeps nagging at me about my recovery not progressing as quickly as it could have. I firmly believe the human brain can change dramatically, if it gets the right kind of help. And I haven’t really been getting as much direct help as I would like. My sessions with my neuropsych have been useful in terms of being professionally productive. But there are many other areas where they just cannot fathom the difficulties I’m having… let alone take action to address them. They’re just not that kind of neuropsychologist.

But I guess I had to bump up against the upper limits of my ongoing TBI rehab, in order to get to this point. I’ve pushed the limits of what’s possible in a conventional neuropsychological context, and I’ve wrung more out of that, than I think was ever expected of me. I’ve had phenomenal progress, over the past years, which has benefited me more than words can say.

I’ve also really experienced a great deal of frustration in the process, but that’s not all bad. First, it’s forced me to think critically and come up with my own ideas and approaches about things, where the ones offered me were not working. Second, it’s really anchored a deep compassion in me for others in similar straits. I think I’ve got more empathy for others, now, and I have a better understanding of the difficulties others may face on a regular basis. So, it has been quite useful for me to work with a neuropsych.

On top of that, I’ve been able to have a positive effect on them, so that’s good.

And in the end, it’s taught me to be a lot less trusting, across the board, of “experts” who claim to to have the market cornered on a specific discipline. I tend to be naive and trusting of folks in positions of authority — especially the folks I like and get along with. But they’re as human and as flawed as the next person, so…

Anyway, it’s all connected and everything has its place.

Next…

What’s next?

  1. Getting a better, more in-depth understanding of my deficits — and yes, they are deficits, not just differences or challenges. There are real ways I need to improve, in order to perform at my best and have a high quality of life.
  2. Identifying where those deficits are holding me back, and where fixing them will help me. This is central to recovery, because I have to understand the context and the meaning of my work, in order to stay motivated.
  3. Working on my exercises again. I have gotten away from doing exercises, and I am getting back to them. I used to do Dual N-Back training and some Brain HQ training, which seemed to help me. But I left that behind — I think when I was starting to get better. I often do that — I make progress up to a certain point, and then I wander off and get caught up in other things.
  4. Making sure I get plenty of rest and I eat right. One of the big things that holds me back, is how tired I get. I think this is why I abandon things I enjoy – I get into them, I work myself into a frenzied state of enthusiasm, and then I wear myself out. When I get tired, I feel bad… so the very things that used to give me joy, now seem to make me feel like crap. It’s a recurring cycle, which I can break, now that I understand it.

The thing I need to understand in all this — and remember over time — is that I tend to progress in “fits and starts” and I don’t always need to push myself as hard as I do. And in other times, I need to really push myself much harder than I feel like. I can generally figure out what my system needs, if my head is “not in the mood”. For some reason, it’s contrary.

But that can be a good thing, because it ensures that I still have my own mind, no matter what the rest of the world says.

If I’m going to see change in my life, it’s going to need to come from me. I look forward to finding someone who can work directly with me in a more proactive way, but no matter what, I’ve got to be the one driving the change.

After all, change is what I do.

When dead-ends work in my favor

Note the two tracks on either side that continue forward

My specific discontent with my neuropsychologist is providing impetus to expand and look in more directions for input and ways to progress. That’s working to my advantage, because it’s easier to move on to the next level, when what used to work… doesn’t anymore.

For work situations and professional interpersonal challenges, they can be very helpful.

But in everyday personal connections and relationship matters, not so much.

In the ways they are helpful to me, they have been indispensable.

And in the ways they are NOT helpful to me, they have also been indispensable. Their limitations are forcing me to branch out and seek additional input and help elsewhere.

Which is good. Because there is a whole new emerging world of “brain hacking” that is too “fringe” for them to consider seriously. They almost can’t consider it, because to do so would compromise their professional reputation and put them at risk for losing everything they have worked so hard to build up. They’re a sitting member of a very important organization, so they have to be conservative and avoid any appearances of quackery.

Anyway, I’m digging into new approaches with literally modifying my brain’s wiring and addressing issues that I’ve had for a long, long time. I’m looking at ways of getting metrics on what fundamental deficits I have — and yes, they are deficits, not just difficulties or differences.

They are deficits, and I’m tired of putting them in terms that make them easier to live with and accept. I am tired of accepting my limitations and just putting up with them. And I may have found a way to actually address them at a fundamental, organic, structural way.

More on the Feuerstein Method later.

For now, it’s time for me to be functional and cut this blog post short. I need to get to work, because I’m ending the day early for an appointment with another counselor I see for family / pain / health issues. This counselor poses a completely different set of challenges for me, and it’s actually good practice for me to critically assess what they tell me and figure out if I agree with them, or not. A lot of times, I don’t, and it really tweaks me. It puts me in a foul mood.

Today I want to do things differently. And so I shall.

Onward.

When getting no help is the best help of all

Well, that was no help at ALL — or was it?

I had a really good session with my neuropsych last night. But not for the reasons you might think. I came away with a renewed sense of really being capable of dealing with things on my own. In terms of having someone to bounce ideas off of, as well as sorting through the professional social landscape, they have been incredibly helpful to me.

I’ve been having a lot of physical/logistical challenges, lately. Vision, balance, headaches… feeling not-quite-here. It’s been pretty distracting, and it’s been adding to the overall burden of my daily life. The job changes and my spouse’s mental/cognitive status have been putting a lot of pressure on me. And I’d like to clear out whatever physiological and logistical issues I can, so that I can free up more energy to deal with the bigger emergent issues in my life.

The issues are good, as well as bad. I have a new job coming up, and I want to be in top shape to step up.This is really important to me — a new chance to really jump-start my life to where it should be, by now. My TBI in 2004 not only took the wind out of my proverbial sails, but also blew directly against me… alternating with stopping completely, so I was stuck in the doldrums.

So, now I have a chance to get back. I’m feeling a little pressure — but even more than that, a huge sense of promise, that I want to live up to, to my fullest.

So, I had gone to my neuropsych appointment with the hope of discussing these issues with them and coming up with some solutions.

However (and I’ve known this for years), they are a particular brand of “mind-only” Buddhist and they believe that we create our worlds with our minds and thoughts, and the difficulties I’m having are just exacerbated (if not created) by my having a skewed understanding of myself, who I am, and how things “should” be in my life/the world. They’re also very much into the idea that we create suffering in our minds, rather than it coming from the outside world. And that’s about the most bizarre distortion of Buddhism I’ve yet to hear. It’s common with American Buddhism, which is a strangely morphed version of “the original” that has people outside the West shaking their heads in bafflement. American’s (and perhaps a lot of Westerners) have their own spin on suffering and its causes, that is unique to them… not to Buddhism.

I’ve been through this kind of exchange with them in the past, and it always leaves me frustrated and exasperated. And it makes me want to fire them. I go to them for help with very real issues that I am reluctant to share (and have difficulty talking about), and all they can tell me is, “Change your perception of your difficulties, and that will relieve your suffering.” Oh My God. I just re-read that, and it sounds so ridiculous. Ludicrous. And it could tweak me into a migraine. But I’m not going there, right now, thank you very much

I’ll resist the impulse, because there’s a valuable lesson coming from this.

It’s a very strange sort of dissonance that takes place in that office, some days.

I have the hardest time actually telling people about my difficulties, and admitting how hard things have been for me. It’s so much easier to just cover it up and suffer in silence. Not always suffer, but just suck it up and deal with it. But there are times when I reach a point where I just can’t hold out anymore, and I need to discuss my concerns with someone — and also come up with a plan of attack.

So I work up the courage to go to their office with the intention of finding solutions to issues I’m having, which have been a huge source of distress to me. And we end up talking about how I perceive these issues that are causing me so much distress… “showing” me how my attitude is actually adding to my discomfort. I could be wrong (and I often am because my judgment gets all turned around and paranoid and narrowed, especially lately), but they seem to be encouraging me to acknowledge things as they are, see the hardships and accept them, and not let them get me down or stop me from just living my regular life.

Oh my God. Some days it is so exasperating. I’m genuinely having issues, and they really seem to think it’s all in my head.

Right.

Should I stay or should I go, now….? (I hear The Clash singing in the background.)

It’s complicated. This individual has helped me tremendously, in terms of getting me back on track with my professional life. That’s where their “sweet spot” is. I don’t have anyone close to me in my life who is actually mainstreamed in the way that I am. My family is very small-town and rural, which is not a bad thing. It’s just very different from my own immediate world. And my family is very religious in ways that are different from my own. With my neuropsych, I have had huge success in sorting out my work life, my relationships on the job, understanding the personalities I’m dealing with, as well as workplace dynamics, and that’s been more valuable than gold to me.

The place where they do NOT help me, is with my logistical issues and all those weird, distracting symptoms and anomalies that keep me on my toes.

Those, I need to sort out in a different way.

Which I shall do. I’ve found a rehabilitative neuro-optometrist near me, and I’m going to make an appointment with them to rule out any vision issues which could be screwing up my balance, as well as messing with my other senses. I just need to rule things out. I hope they take my insurance – I’ve got crazy-good insurance right now that lets me go see any specialist I want, without a referral needed. And I can’t afford a non-insured visit, quite frankly.

I’m also going to follow up with another neurologist about the autonomic testing. And I have a follow-up appointment with the physiatrist in a couple of weeks. I’m going to see if I can move that up — or out — because the appointment coincides with my first week on the job, and I need to clear up my schedule for that.

Plus, I’m really bumping up my commitment to fitness, keeping healthy, and strengthening myself. I’m dealing with the issues with my upper back (my traps are not as strong as they should be, and my upper body needs more strength, while my lower body needs more flexibility to accompany the wider range of activity I’ve been giving it. I no longer sit all day, like I used to, and I’ve been walking/hiking a lot more. So, my legs have to get used to that.

I’m basically taking things into my own hands, health-wise. And I’m investigating new ways to rehabilitate myself.

There’s a world of hurt under the surface of my daily life, and I can’t seem to get help from the “standard set” of people I’ve been looking to. So, I’m branching out and expanding.

And that’s exactly what I’ve been needing to do.

Onward.

A good night’s sleep… and a new direction

zelinsky-eye-info

Eye-opening info on the visual systems and the brain-body connection – click to read this

I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.

Everyone has been really great about it. Of course, we’re only in the early stages of grief.

Denial… Anger… Bargaining… Depression… Acceptance.

We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.

As long as I’m prepared, that’s the main thing.

The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.

Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…

I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.

In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.

I miss those venerable elders. I miss them a lot.

Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.

The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.

Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.

At least, it’s loud for me.

Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.

In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.

Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.

And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.

Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.

My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.

I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.

Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.

But anyway, that’s another blog post for another day.

Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.

Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.

And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.

New tests for a new day.

Interspersed with lots of rest.

I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.

And it finding out if I have vision issues that can be fixed, could be an important next step.

Onward!

Gist reasoning experiment – What’s going on here in this scene?

When I was first tested on my “gist reasoning”, I did extremely poorly.

I didn’t learn till later, that I was supposed to answer a certain way. This next exercise is similar to the test I failed badly, the first time I took it.

Look at this picture – what’s happening? Choose below:

What's happening here?

What’s happening here?

  1. They are having tea
  2. They are in a stage play
  3. Older woman is ignoring the girl in the pink shirt
  4. Three people are sitting, one person is standing
  5. There are a lot of blue items – shirts, jeans, book, sofa, seat cushion
  6. The flowers on the table in the background almost match the youngest woman’s shirt
  7. The girl with the neck collar is getting all the attention
  8. The family is playing out an unhealthy dynamic that it always does, and it’s bothering a number of people here

Each choice is technically correct.

Which one summarizes what’s going on, at a high level?

Or do you have another perspective?

Write it down, if you have trouble figuring out “big picture” ideas on a regular basis, and check in with someone you know who does a better job of it, than you.

See what they have to say about your interpretation.

HERE are the Gist Reasoning Exercises

Gist reasoning is all about picking which pieces of information matter, and which don’t.

Gist reasoning strength is a better indicator of how badly someone has been impacted by TBI, than just about any other measure. Intelligence tests and memory tests don’t do it. It’s how we put it all together, that shows how well — or poorly — we do.

I have created some Gist Reasoning Exercises – a Gist Template – for TBI recovery and Some Gist Reasoning exercises to “Bounce Out” Items that Don’t Belong

Like I’ve said, posting materials online for people to use and improve is NOT rocket science. You just have to put something out there. But this kind of instruction seems to be tied up with folks who have certain professional credentials or special training.* For me, as a person who has been profoundly impacted by multiple undiagnosed and unaddressed TBIs, it makes my heart ache to think of how many others like me are out there not getting the help they (and their families) desperately need, and I cannot just stand by without doing something about it.

So, I’m building tools, based on gist reasoning information I am finding online. Below are links to some scenarios and collections of terms — some of the items matter to the Scenario, some of them don’t. Follow the instructions for each Scenario.

You can either print out the pages, or you can just write it all down — writing it out by hand is good, because it exercises your brain in helpful ways. You may want to show it to someone who has better daily functioning skills than you, to see if you’re on track.*

Check back again in the top menu and also on the Scenarios page for added tools and exercises. Some of them may seem quite rudimentary, but it is what you make of it. You can really “play” with some of them! So, have fun with it.

Just so we’re clear, I have to say the following, so I don’t get in trouble for claiming to fix brain-type things without proper credentials… I don’t have the money to defend against a lawsuit.

*Please note: These exercises are for “entertainment” purposes only, and no guarantee is made about their ability to improve your gist reasoning abilities. I am not a formally trained educational instruction designer. I have conducted trainings for many people in professional settings, as well as taught individuals how to use software. But I’m not formally trained or certified in this kind of work. Like many things in my life, this is an experiment intended to help people like me who have been left behind or overlooked by the established rehab industry.

Augh! Where are the gist reasoning training exercises?

“Getting the Gist” means narrowing down a lot of different details to what is most important, and understand it. If you can restate the gist in your own words and have it mean the same thing as the original, you’re golden. Print out this page to practice your gist reasoning.

Okay, so “we” now know that gist reasoning is a more accurate indicator of how well folks with TBI / concussion can live their lives, than other sorts of testing, like memory and IQ.

Those of us who have been working through TBI issues, lo these many years, have known it a lot longer… A hearty Welcome to those of you in the scientific / academic community who are just now catching up.

And published research also now shows that gist reasoning can be strengthened with exercises.

However, there seems to be a dearth of actual exercises you can do online. That’s odd. Because:

A) Folks with long-term TBI issues can be profoundly marginalized from the mainstream, and the Internet is their one reliable connection to the rest of the world.

B) Online training is incredibly easy to put on the web. It may be difficult to design, but once you’ve got it designed, publishing it is a relative breeze. There are many, many people who do far more complicated things on a regular basis. Finding decent developers is not rocket science.

C) You’d think that everyone in the country would be falling over themselves, getting gist reasoning training online, because helping people with TBI better handle their lives can translate to improved daily functioning, which can translate to higher employment rates, which can translate to more tax revenue and lower needs for social services.

That’s what comes to my mind, anyway.

And yet, looking around online (granted, I only spent a few hours between yesterday and today, but I’m a skilled searcher, and if I can’t find it… well, it’s really hard to find), I’m not seeing any gist reasoning training readily available, other than some that are intended to teach kids how to read, think, and understand.

There doesn’t seem to be much developed for adults, especially those recovering from brain injury.

I did find a Gist Template for kids, which I have modified for TBI-surviving adults and posted on my site here: https://brokenbrilliant.wordpress.com/brain-injury-recovery-tools/gist-template-for-tbi-recovery/ You can print it out and use it to practice your gist reasoning. It’s very simple, but I’m going to try it myself and see if I notice a difference.

Sidebar: You know, I realize now that a lot of what I’ve been doing with my neuropsych over the past 7 years, is working on my gist reasoning. We spend a lot of time with me talking about my days, my experiences, my future plans, and then summarizing them at the end. At times, it seems so tiresome, to have them repeating back to me what I think I just said, but now I understand the method to that madness.

And I’m glad I did not just get up and walk out on them, like I wanted to do, so many times.

I’m glad I just went with it.  Because it works. My deficits that were found, 7 years ago, are still pretty much there without change. However, my ability to live my life fully as well as engage with things around me and also have a higher quality of life than ever before, has dramatically increased. Phenomenally, in fact.

So, being all incensed about the lack of online tools for TBI recovery, I’ve started adding gist reasoning tools to this site. I’ve found some really intriguing ideas, that I think can be replicated… and possibly improved. And there appears to be a massive gap in online gist reasoning training, specifically for TBI survivors. Plus, a lot of this is not rocket science and it can be replicated — even improved upon — quite easily.

Of course, in the coming months and years, I’m sure there will be a flurry of products to help people with this stuff… In fact, there already are tools out there, like Lumosity and BrainHQ. But what about those of us who don’t have all sorts of money to drop… or who have difficulties navigating online payments… or who don’t have (or want to have) Flash on our browsers? Or who just want a “quick hit” of a test to help us sharpen up a bit?

A lot of us are getting left behind – and for no good reason, other than that people either aren’t aware, or they haven’t bothered to try and fix the situation.

But never mind that.  I’m going to do something about it, rather than just bitch and moan.

So, in summary (here’s where I work on my own gist reasoning):

  • I’m really encouraged by the recent research that shows that the degree of TBI recovery is demonstrated by a person’s “gist reasoning” ability — the ability to “get” the point of a mish-mash of details from situations. I’m also very excited by the fact that gist training can — and will — help us to recover.
  • I’m frustrated by the lack of online information about gist reasoning, along with exercises to strengthen it. I’ve searched… and I have not found much.
  • I don’t understand why there aren’t more tools online — especially for TBI survivors, whose main contact with the world may be their computer and Internet connection. Online publishing is actually quite simple, and it could be a great way to alleviate a lot of suffering.
  • Never mind what others are doing/not doing. I’m going to put together my own tools and post them here.
  • This is my first contribution towards fixing a situation that exasperates me: A Gist Template for TBI Recovery

More to come.

Onward.

So, how can I incorporate this finding about gist reasoning in my own life?

Get it?

So, apparently, Gist Reasoning [is] Indicative of Daily Function in Traumatic Brain Injury. Check it out (bold emphasis is mine):

People with traumatic brain injury may have more difficulty with gist reasoning compared to traditional cognitive tests. This cognitive assessment may in turn be a clearer indicator of a person’s ability to succeed at a job or at home after injury.

A cognitive assessment developed by the Center for BrainHealth at the University of Texas, Dallas evaluates the number of gist-based ideas participants are able to extract from several complex texts. The test provides a more clear assessment of cognitive abilities for patients that are considered “normal” following traditional cognitive testing.

The study, published in the Journal of Clinical and Experimental Neuropsychology, included 70 adults aged 25 through 55, 30 of which had traumatic brain injury one year or longer prior to the study. The subjects went through a series of standard cognitive tests to assess memory, inhibition, and switching.

The group had similar IQ, reading comprehension, and speed of processing scores, however nearly 70% of the TBI subjects scored lower on gist reasoning than controls.  These decreased gist-reasoning scores correlated with self-reported difficulties at work and home. Additionally, cognitive tests alone predicted daily function with 45% accuracy, while the addition of gist-reasoning scores boosted accuracy to 58%.

The impairment of gist reasoning could reflect a loss of flexible and innovative thinking in patients with traumatic brain injury. 

Gist reasoning is the ability to “get the point” of something. It’s being able to extract the unimportant details from a narrative and figure out the salient / important / significant details… and the “get the gist” of the story.  It’s being able to look at a picture and tell what’s really going on — or what other people think is going on, so you can discuss with them.

Gist reasoning is turning out to be a better indicator of impairment after TBI / concussion, which is encouraging to me, because showing up for neuropsychological testing and being told, “Hey, you’re really smart in a lot of ways!” is hugely deflating when you’re struggling with day-to-day issues. Knowing you’re smart just rubs it in, and it makes you feel even more lame and damaged. But being able to measure gist reasoning and see that there’s significant impairment in that… now that’s something to sit up and pay attention to.

After reading about the Center for Brain Health’s published research on improving TBI recovery with certain types of brain training, I’m wondering how I can incorporate that into my own life and ongoing recovery.

My own test results, with two passes divided by 4-5 years of active rehab work, show that I’m way smart in some areas, but I struggle in a few respects. And in 5 of 6 areas of deficit, my deficits have not changed significantly. I guess that’s where Muriel Lezak would say I have not recovered.

On the other hand, the area where I have changed, is how well I’m living my life. And that’s what really matters to me. That, to me, is what recovery is all about, not reversing deficits which would probably change over the course of my life, anyway(!)

I can still tell I’m slower than before. I can still tell I struggle with many things, including fatigue and irritability and fogginess. But these things aren’t wrecking me, the way they used to.

I still need to work at things on a daily basis. And I need help, here and there — although I’ve learned how to behave in a way that doesn’t look like I’m disabled and in need of assistance. I still struggle with things that “should” be easy for me, but haven’t gotten that way — if anything, some of them have gotten harder. Getting going on things can be a huge challenge, when I’m not motivated. And stopping things that I need to stop, to do other things I need to do (like stopping surfing the web in the morning so I can get to work on time), is as hard as ever — maybe harder. My memory is still Swiss-cheesey — especially when I’m tired. And although my temper has calmed down immensely in the past 7 years, I still have my moments, when I just Go Off the rails. Likewise with emotions like sadness and  despair.  I generally keep those in check, because I can go down a rabbit hole that is terribly difficult to pull out of.

I think those times when I am less effective, are when I am overwhelmed by everything that seems important. And I think — from just a cursory reading of literature — that has to do with my “gist reasoning”, or my ability to pick out the salient / important / significant details from a situation and focus on them.

I’ve been doing a bunch of online research about the SMART training that the Center for Brain Health does, and I found that they’ve actually patented it (thank you Google patent search). If this is indeed intellectual property, and it’s controlled by them, then it’s more valuable to them in terms of money and quality control, than it is to the general populace.

And telling everyone Woo Hoo! You Can Recover From TBI With Our System! … only to say, “Oh yeah, it’s proprietary… but you can visit us and get training here — or at another one of our approved affiliates”… well, now I’m less elated.

Yes, it’s hugely encouraging and motivating to see their research that it’s possible. The thing is, it’s equally out of reach. I am not within easy striking distance of Dallas, TX, nor do I have the time and the money to take 8 weeks to retrain myself on the Strategic Memory and Reasoning Training© (SMART©) program.

Oh, well.

Not that this is going to stop me trying to employ their techniques, however. I’m crafty that way, and because I’ve always been on the fringes of the medical/rehab establishment (first because of lack of information in the world I grew up in, and later due to lack of money and resources and my diminished ability to communicate with healthcare providers, thanks to a slew of unaddressed issues)… I’ve had to take a lot of my recovery into my own hands.

Of course, it helps to have access to a competent neuropsychologist to consult with on a weekly basis, but even they are a bit flabbergasted at my recovery. They say they’ve “never seen anything like it.” Woot.

So, yeah. I think I’ve got an approach that works for me – and it may work for others.

I’m going to be doing more research over the coming week and see if I can’t come up with some practice exercises for myself and others to use to improve gist reasoning. I mean, how hard can it be? It seems really fundamental to me — it’s just been hidden behind all the Wizard Of Oz machinery of the medical establishment. Hidden in plain view, all this time.

How can I improve my gist reasoning? How can I strengthen my ability to screen out what doesn’t matter, in favor of what does — and move forward?

Figuring this out — I believe — will help me prioritize my activities better, help me determine the things that matter and the things that don’t, and help me stop wasting so much time on chasing distractions for the sake of distraction. I have a handful of projects I need to finish, and I’m hoping this will help me do just that.

This is going to be interesting.

Onward…!

Getting off coffee — After the migraine subsides

So, this is interesting. I did something to my system over the weekend, and I came down with a horrific migraine yesterday afternoon. It was the worst one I’ve had in quite some time. I’ve had some of those where you go blind in one eye and the world is spinning and you feel like you’re going to throw up, but I don’t remember the headache and weird feeling and light sensitivity ever being as bad as they were yesterday.

Holy crap.

I really didn’t expect it at all. My weekend was going really well. I was cutting back on the coffee and eating a more substantial breakfast of oatmeal and fruit, along with more fruits and vegetables throughout the day, getting more exercise (I rode the bike a long while on Saturday and Sunday and went for multiple hikes in the woods, up to the top of a nearby hill in our local conservation area), and drinking more water. I felt fantastic, with a lot of energy. I also got some roasted dandelion root tea, to try out as a substitute for coffee. I drank some on Saturday afternoon. It was nothing to write home about, and certainly not a reliable substitute for coffee. But it was worth a try. It was in the coffee aisle at the grocery store, after all.

But I woke up to a screaming migraine after my nap on Sunday afternoon. Couldn’t stand the light, head throbbing, sick to my stomach, feeling dull and drugged. Usually my headaches are just there, but this one was intrusive. Holy crap, whenever I moved, it just thrashed me. Up around an 8.5 – 9 on a scale of 1 – 10. I had a bunch of things I wanted to do on Sunday afternoon, but all I could do was sit in a dark room with my sunglasses on, soaking my feet in a hot mustard bath.

I had half a cup of coffee, ate a banana and a piece of chocolate, took a couple of Advil, and drank water (how’s that for performance enhancement?) and I started to feel better. Not as sensitive to light and not as sick. Still not great, but better than I had been. You do what you have to do.

I suspect this was partly about cutting back on coffee… increasing my exercise… changing my diet… and drinking that tea. All that change was abrupt, even if it was in a positive direction. I have a tendency to overdo things out of enthusiasm, and I think this was one of those times. I’m nervous about the MRI, and my anxiety is really rising. So, to calm myself down, I do things that give me the sense that I have some control over my life — changing my diet, exercising, trying new foods, cutting out coffee.

I’ve done some reading over the weekend about migraines, and they can be triggered by a bunch of things, including changes to diet and activity – check, and check. I know that exercise tends to start a headache with me, and I did start to get a bit of an ache while I was riding the bike — both days. But it’s usually just a headache, not the nausea, crazy feeling, and intense sensitivity to light that had me walking around the house with all the curtains drawn and wearing my sunglasses because even through the curtains, the light was too bright.

So, I did a number of things differently than usual, and I learned my lesson. I need to take things slowly — gradually — not dive in head-first, as I tend to do. Impulsiveness plus anxiety equals — surprise!

And not a good surprise, either. Right now, I’m fighting back more throbbing pain, keeping the blinds drawn, and reaching for the Advil. I don’t want to take the Imitrex, because I don’t know what it will do to me, and I have to be “on” this morning.

So, I need to take things easy and make change gradually. Not bombard my system like it’s a machine. As much as I like the idea of roasted dandelion root tea as an alternative for coffee, I don’t think it’s going to do it for me. I think it really contributed to the migraine. After the pain subsided to a relatively simple headache of “4” on a scale of “10”, I tried to drink it again yesterday evening. And the headache started up again. So, even if it’s not the sole contributor, it did not make things better for me. Dandelion is a natural diuretic, and it has other properties, too, that are used as home remedies.  I got some to get ready for my MRI on Wednesday, so I can flush out my system and not be poisoned (too much) by the contrast agent. But I just can’t do it.

Well, better I learn now, than later. That’s for sure. I’d rather get this lesson out of the way ahead of time, while I have the time to rest and recuperate. I have a busy day on Thursday, so I need to not get knocked out by the MRI on Wednesday. Most people don’t have problems with it, and they look at me like I have two heads when I tell them I get sick afterwards, but so what? I know what happens to me, and I need to get ready.

So, it’s plain water and healthy foods for me, thank you very much.

Onward.

Getting off coffee – as quickly as I can

Say it isn’t so

So, my new neuro encouraged me to get off coffee to help my migraines.

Oh, great wailing and gnashing of teeth!!! How can anyone expect me to do away with coffee?! It’s ridiculous. Why would I do away with my last real vice (aside from super-dark chocolate)? It’s the only thing that helps my mood and thinking when I’m dragging — which is a lot — generally within 4 hours of waking up and living my full-tilt-boogie life.

I scoffed at the very thought of it. Give up coffee. Yeah, right. Not gonna happen.

Why would anyone ask me to do such a thing — especially for headaches? I always thought that caffeine helped headaches, since so many headache medicines (including “Migraine formula” versions) have caffeine in them.But apparently, it’s the other way around. It doesn’t help. It hurts.

Here’s how I understand things now, based on what I’ve learned in the past 48 hours.

I found an article over at Lifehacker.com What Caffeine Actually Does to Your Brain and it was kind of sobering for me.

I’ll quote from the article:

Right off the bat, it’s worth stating again: the human brain, and caffeine, are nowhere near totally understood and easily explained by modern science. That said, there is a consensus on how a compound found all over nature, caffeine, affects the mind.

What Caffeine Actually Does to Your Brain

Every moment that you’re awake, the neurons in your brain are firing away. As those neurons fire, they produce adenosine as a byproduct, but adenosine is far from excrement. Your nervous system is actively monitoring adenosine levels through receptors. Normally, when adenosine levels reach a certain point in your brain and spinal cord, your body will start nudging you toward sleep, or at least taking it easy. There are actually a few different adenosine receptors throughout the body, but the one caffeine seems to interact with most directly is the A1 receptor. More on that later.

What Caffeine Actually Does to Your Brain

Enter caffeine. It occurs in all kinds of plants, and chemical relatives of caffeine are found in your own body. But taken in substantial amounts—the semi-standard 100mg that comes from a strong eight-ounce coffee, for instance—it functions as a supremely talented adenosine impersonator. It heads right for the adenosine receptors in your system and, because of its similarities to adenosine, it’s accepted by your body as the real thing and gets into the receptors.

Update: Commenter dangermou5e reminds us of web comic The Oatmeal’s take on adenosine and caffeine. It’s concise:

What Caffeine Actually Does to Your Brain

What Caffeine Actually Does to Your Brain

More important than just fitting in, though, caffeine actually binds to those receptors in efficient fashion, but doesn’t activate them—they’re plugged up by caffeine’s unique shape and chemical makeup. With those receptors blocked, the brain’s own stimulants, dopamine and glutamate, can do their work more freely—”Like taking the chaperones out of a high school dance,” Braun writes in an email. In the book, he ultimately likens caffeine’s powers to “putting a block of wood under one of the brain’s primary brake pedals.”

It’s an apt metaphor, because it spells out that caffeine very clearly doesn’t press the “gas” on your brain, and that it only blocks a “primary” brake. There are other compounds and receptors that have an effect on what your energy levels feel like—GABA, for example—but caffeine is a crude way of preventing your brain from bringing things to a halt.

So, basically, it’s keeping my body from putting the brakes on, disguising fatigue from the receptors that are built to realize when there’s a bunch of adenosine in my system.

That can’t be good, if I’m running out of steam and genuinely need to rest. Basically, it sounds like caffeine is tricking my body into picking up speed, when it should be doing just the opposite.

I kept reading… and when I Googled “coffee neurotoxin”, I came across this article: Coffee, caffeine, performance and you.

I quote again:

Caffeine is neurotoxin alkaloid. It stops insects eating plants. It works by being a very similar shape to adenosine, a nucleotide which is very important in energy transfer and neurotransmission. Adenosine inhibits nerve firing because it prevents the release of excitatory neurochemicals such as serotonin and acetylcholine.

The structure of caffeine as elucidated by Hermann Emil Fischer.

Caffeine settles into the adenosine receptors in the surface of neurons and in doing so, prevents adenosine itself from getting in there. Therefore no receptor activation can occur and the effect is just the opposite. With no adenosine in place to tranquilise the nerve, excitory neurochemicals will be released. Blood vessels constrict in your head and neck, the rate of nerve firing increases, your blood pressure and heart rate may rise and you experience a renewed interest and vigour when it comes to your Excel document.

Your higher cognitive function is now improved. Even what you can see is enhanced. The stimulation of nerves which use acetylcholine to send their messages affects a variety of areas in the body and brain. The visual cortex is one such area and drinking coffee causes an enhancement in our ability to process the shape, colour and location of visual objects.

 So, here’s this neurotoxin getting into my system, pumping me up and cranking out those neurochemicals. It might not seem like such a bad thing, but I’ve also heard that part of the excitory activity actually comes from the body’s defense response to a perceived threat from the caffeine, which some have called a natural pesticide. So, my system is getting a dose of pesticide and going into fight-flight mode to defend itself from this threat I’m introducing on purpose, which then makes me feel like I’m doing better, when it’s really the adrenaline that’s coursing through my veins that’s telling me that.

I don’t actually become better. I just feel like I am.

So, here’s what I take from this whole little 48-hour research investigation of mine:

Caffeine is bad stuff — especially if you have issues with fatigue and TBI. I mean, seriously, when I’m fatigued, I need to rest and recuperate, not push myself through like I always do. That fries my system and makes sure I’m in a persistent state of fight-flight. I know for a fact that that’s no good — it makes it difficult to learn and use higher cognitive functions. And the longer and more intensely I use caffeine, the more I’m stressing my system and whacking it out and jeopardizing my recovery.

In TBI recovery, you need to rebuild connections in your brain and re-learn things your system has (in)conveniently forgotten. Fight-flight marination in adrenaline impairs learning. So, if TBI recovery is dependent on learning, then coffee, tea, caffeine, even chocolate, are all a threat to my successful progress.

I had no idea.

It would have helped, had my neuro actually explained all this to me in a way I could understand. But it really took a passionate raw-food vegetarian fruitarian Australian dude living(?) in Thailand to make it clear. Here’s his expose that started turning things around for me:

Anyway, there it is. More to come on this, but for now,  it’s time to seriously cut out the caffeine.