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…!

To medicate or not to medicate

Choices, choices

I’m doing my leg lifts a little differently this morning. I’m going slowly, and I’m not holding onto something for balance, unless I need it. I’ve been having balance problems, lately. Or rather, my usual balance problems have been more of a problem, lately. I’ve almost fallen a number of times in the past few months — while standing up from a table and having to catch myself before I hit my head on the table and/or a nearby chair and bookcase… while starting to walk down a flight of stairs… even while just standing.

So, after talking to the neurologist and my neuropsych and making an effort to notice when I’m dangerously off balance, I’ve realized this is actually an issue. And I need to get it checked out.

So, I’m going to get some autonomic system testing done. I know that it’s been an issue with me, lo these many years, and I need to collect some actual data about it, rather than relying solely on my own observation — which tends to be spotty, because of my Swiss-cheesey memory. If I don’t write things down, it’s like they never happened. And I can’t always take the time to write everything down.

It would just start to get a bit hypergraphic, methinks.

Anyway, over the weekend, I also took some Sumatripan (generic Imitrex), which did knock out the migraine I felt coming on. But it also left me feeling drugged and dopey. I felt “off” all weekend, like I had chemicals in my system. It wasn’t like I was looking for that. I will take meds when I have to. The thing was, I was definitely feeling “synthetic” for a few days. Monday I started to feel better, but Sunday it was like I was in a druggy fog.

I can’t remember if I took the migraine meds before or after I had my dizzy spell, but as it turns out, dizziness is one of the reported side-effects of Sumatriptan. And when I looked at the list of side-effects with my neuropsych yesterday, it turns out that it’s probably not a great idea for me to be taking it, due to possible effects on my autonomic system.

See, here’s the big issue I have with meds: They are dispensed from on high, and unless I have access to someone with an advanced database of indications and contraindications, as well as sensitivity to my situation and an understanding of how things might affect me, I’m pretty much a guinea pig for finding out what’s going to happen with me. And doctors (in my experience) routinely prescribe things that they don’t fully understand. They figure they’ll have me try it out and see — essentially turning me into a science experiment.

I’m extremely sensitive to medications, but nobody seems to take that seriously. Meds disrupt my attention and concentration with the feeling they often give me. Unless I am completely laid out by illness, such as bronchitis or some other major infection that I can’t fight off on my own, the cure can be worse than the illness it’s supposed to fix.

I need to figure things out up front as much as possible, not just find something that’s worked for other people, give it a whirl, and then have my life disrupted by exciting discoveries.

Not when I can take another route to dealing with things.

So, as for the autonomic testing, both the neuro and the neuropsych are thinking I could take a pill to deal with the situation. Please. Another medication? If there is any way on God’s good earth that I can find another way to strengthen the underlying structure of my system, and build myself up that way, I’ll do that. I mean, seriously. Say I do go on a med for my balance. Is that going to help me strengthen my body to maintain balance better? People often have falls — especially later in life — because their systems are weakened, they don’t have the muscular control to catch themselves, and their reactions are slowed. If I use a pill to fix my issues, then where is the incentive to strengthen the underlying “framework” that keeps me upright?

The direction I want to take with the autonomic testing is NOT pharmaceutical. It’s structural. I don’t want additional chemicals coursing through my veins, when I can offset the issues I have with strength and balance exercises, eating right, and getting adequate rest. I need to approach this systemically, not have an intervention which may actually weaken me.

It’s pretty irritating for my neuropsych and my neuro to be so pill-happy. I’ve been on this rehab quest for about 7 years now, and my neuropsych says they’ve never seen a recovery like mine. Okay, out of all their other patients, how many of them are on medication?  I’m not. I refuse to be — especially for things that I can address and strengthen myself — or compensate for (by strengthening other aspects of my neurology).

It’s frustrating and alienating for them to be so eager to prescribe meds. Maybe they just want a quick way to relieve suffering. That impulse is noble, but the pharma aspect of it doesn’t sit well with me.

Anyway, we’ll see. I know where I stand, and I can’t let them bring me down.

When understanding keeps its distance

On the outside, not even looking in

One thing that has been a consistent problem with me for many years, is understanding what people are saying and being able to hold a reasonable conversation that I could then remember later. Yesterday someone found their way to this blog by searching for an answer to why their brain injury makes it hard for them to understand what’s happening on t.v.

I kind of glossed over it — I was tired and I was running out of steam. But now luka wrote something in the comments that really summed up a lot of things I was unable to think of or put into words, yesterday. His words are in bold.

This difficulty in trying to understand what people are saying has been one of the hardest things for me to handle. There came a time I wanted only to be in another culture, so I’d have an excuse for just not “getting it”. Now I’m with my roots and I feel their hidden disdain for my existence. And I’m not running. I’m too tired and too old now. They’re stuck with this smart, retarted man. And I will take to isolation more and more, but I won’t be out sight out mind. But communication at times baffles me much more than one could tell. Well, not sure if it’s denial or pride, but I think for the most part it has been an area that has bewildered me. It’s that it fluctuates some and in my compensation and extreme need to focus and to remember, I can, at times, be more aware than anyone about what is being communicated. The problem is that there is usually a lag time. And in mid flight I’m stuck on details and snippets in the conversation that makes me miss much meaning that gives life meaning to our social species.

I can relate to what he says on so many levels. The lag time when people are talking to me… feeling like I have to constantly scramble to keep up — either working overtime to stay engaged in the conversation, or simply recall what someone said to me a few minutes ago. A lot of the time, it’s gone — for good — and I have to make it up as I go along, but I don’t have the energy to keep track of everything, write it all down, and sort things out in my head. So, as often as not, I just go along and pretend I know what’s happening.

I struggled with this for a long time — feeling stupid, feeling retarded, feeling lame. And I tried to address it with my neuropsych, who has really helped me to figure out how to hold a conversation. Now I can converse with people and be witty and whatnot. The only thing is, I’m still lagging. I still have the processing delay. My most recent test results show that my speed of information processing has NOT improved in the past 8 years. I’m two standard deviations below what would be expected of me, given my overall intelligence.

So, I’m literally not making it up. It’s not something I’ve concocted in my head to feel badly about myself or come up with a reason to get pity. It’s a thing. It’s a real, genuine thing. And the fact that my neuropsych keeps downplaying my irritation with it, just adds to the difficulty.

So, I have effectively learned how to make do in conversations with my neuropsych. I’ve learned how to fake it even better than before. I can hold my own pretty well and conduct a conversation, and I am even comfortable now, saying, “I don’t understand — can you please repeat what you just said?” I never, ever did that before, because I was too busy trying to keep up to stop the conversation to get clear on something that was lost along the way.

It’s not genuine improvement — it’s functional improvement. That means to me, I can function better, I look better to other people, and I have better outcomes from interactions with people. But I’m still in the dark. I’m still struggling. I just don’t show it.

The most painful thing, is that my neuropsych flatly refuses to believe that I still struggle with this. They seem to believe that by telling myself I’m fully functional and can do anything I can put my mind to, I can achieve the world. Or at least a significant part of it. They can be very strange that way, like someone who’s bought into a whole Great American Mythology of Anything Is Possible If You Just Try Hard Enough.

I hate it when people who should know better, fall prey to their own mythology. My neuropsych believes (truly) that you can make yourself into whoever and whatever you want to be, and if your experience isn’t turning out how you’d like it, you just change your definition of what constitutes a good experience, and voila — you’re a success. I’ll spare you my rant on that. It’s just a distraction.

I’ve actually been trying to speed up my processing, I’ve been trying to work on my distractability, I’ve been trying to strengthen those areas where I have demonstrated problems. But years into my rehab, five of the six areas of significant difficulty remain unchanged.

At least, that’s how it was in 2013. I may have actually improved since then.

Anyway, yeah, there’s the whole thing about people seeing your innate intelligence and then not understanding why you’re so stupid at times… that’s all too familiar. The sidelong glances when you say something unexpected… the subtle (and not-so-subtle) hints… the teasing that has a nasty edge to it… I understand why people do that. It’s because it makes them uncomfortable, and it’s not consistent with their image of who you are and how you should be.

People are neurologically and biochemically invested in us being a certain way — it tells them how they should be around us, which stimulates certain neuro and biochemical pathways. How we are, makes others who they are. And when we are “not who they think we are” in predictable ways, it’s an existential threat. So, they feel endangered. And they lash out at us without even knowing it. We frighten them — Simply by being different from what they expect. And they feel the need to defend themselves and their understandings of who they themselves are.

But even if I understand why people are this way, I am so sick of it. I’ve been sick of it for over 40 years. I’m just about to turn 50, and I started having TBIs when I was 7 years old — probably even before that. Heck, I might have had an anoxic brain injury when my mother left me in the care of a neighbor kid who was “special” and put a clothespin on my nose to see what would happen. (I’m swearing in my head, but I won’t write what I’m thinking.) People have been really unkind to me for a long, long time, because of TBI-induced irregularities in my behavior and performance, and even to this day, the spotty nature of my abilities makes me absolutely nuts.

Luka continues:

Many people have told me that I had autism, but over the years, I am more convinced that it was the result of traumatic brain injuries. Some have said that they see it as absence siezures. And the psychologists see it as dissociation. People point to all that I accomplished in the world’s terms. As if it is proof I should see the last 25 years as a success. They point to pictures when I am smiling. And point out that I am “witty” and that wit takes intelligence. I feel dumb as I struggle to get around their idioms and block out sensory stimuli.

And in the past, I, too, was told I was on the Autistic spectrum — people who met me for the first time would actually tell me that it was okay if I was autistic. I didn’t need to be ashamed of it.

Huh.

For a while, I was under the impression I’m an “Aspie” with Asperger’s Syndrome. It’s not a stretch — many of my family really look like they’re on the spectrum, and I’ve got nephews who could be quickly taken for Aspies. After much research into the nature of Asperger’s Syndrome and autistic spectrum (AS) issues, I realize how much TBI folks have in common with them. Sensory issues are a major component of the AS, and they are certainly an issue for brain-injured folks. The ticks and the soothing and the behaviors that I exhibited in the past, when my sensory issues were unacknowledged and unaddressed (See The Deepest Day) were very much like autistic behavior.

But they stemmed from another source. Once I learned what that was, and how to address it, a lot of that resolved.

I also in private and on many nights, wish that I did not wake up December 1991. I see my life as a complete flop. All my dreams passed me by. They see me as having lived the good life and wasteing my God given talents. Just a squanderer who needed a kick in the ass. I see myself as someone who needed much patience and understanding and encouragement. But one who got that from a special few docs and friends and in the end my precious daughter knows truth of her father who so many told her was crap, but I can’t say people and docs didn’t try; many did but the end, they grew weary and the very best one, discarded me. And down deep I gave up the medical scene. Doctors’ offices are now triggers for ptsd. How sad given all they did do for me even if they diagnosed me wrong. I’m finally saying screw everyone who looks at me as a failure or a nut case. I’m taking a little empathy that I bring to others and going to start giving it to me. I’m 52 and shunned by many. Behind my invisible injuries, seen as con games or character flaws, is a person whose not just had dreams shattered twenty-five years ago, but stopped knowing what I had dreamt of. What constantly hurts me is that I almost pulled it off. At age 39, while on lamictal, I had started to see how far I’d come and started to have live dreams for me. I even learned what “love” in the romantic sense could be as I knew it before 1991. But in early 2000’s I had another brain injury and now I feel that it’s too little too late. And I don’t have much energy to pretend anymore.

Amen to that, for sure. All my dreams seem to have dissipated… though I’m still working on them and still have hope. I’m pretty bummed, though, that I’ve lost so many years to this injury — years I will never get back. Along the way, I have had some help from people who were genuinely compassionate. But one by one, they all lost patience with me. As though their compassion were conditional and intended to gently but firmly bring me through to the other side, where I would start living up to my true potential.

Yah. That was never going to happen. None of them knew sh*t about TBI, none of them knew sh*t about the brain. And a part of me says “screw them all” with a bitter sneer, because their compassion just turned out to be fake.

One after another… concussion after concussion, TBI after TBI… one bad choice after another. But I’m still here. So yeah, screw them.

But as disappointed I am with my life, I do think that I have a responsibility to use the compassion gained by losing my identity to siezure epileptus/coma state. Compassion and empathy are so desperately needed in these times. I cannot waste these byproducts of TBI and PTSD. Aside from the high level anxiety and depression, I feel very brave and strong in a way that I never gave myself credit for and with others yelling in my ear to “wake up” or “schizo” and me not even getting that, but knowing on some level I was the scorn of those around me. Maybe that is an added bonus of surviving, I know the truth and it is good enough for me. I will die knowing I did my best when they thought I was squandering. God bless.

And here is the key — the gold at the bottom of the bucket of mud — compassion and empathy and the ability to reach out to others and help. All the experts in the world are not going to make the world a better place, a more compassionate place, a better informed place. That can only happen through the efforts of everyone “on the ground” who is in the trenches of human experience, day in and day out. I, too, feel a responsibility to use the compassion I’ve gained — and yes, is so desperately needed. I can still contribute, in my “partial-ized” state… my many-times-fractured, many-times-healed state of mind and body.

I too have known what it’s like to have people yelling “wake up” and “crazy” in my ear — so loud, it was painful. People close to me, who were supposed to love me. People who were supposed to be my friends. And I also know what it’s like to not get that — it was just yelling to me, and it took me a little while to figure out what they were really saying, and why.

Yelling at someone who lives with a brain injury will literally not do any good (so why do people do it?).

In the end, it’s the truth that matters. The truth of our experience, the trust we have for ourselves. Finding the value in our difficulties, and offering a helping hand to others. These days, we have greater ability than ever before, to make a positive difference in the world, and even if we think we can’t — I can promise you that you really can. Every interaction we have with others gives us a chance to make a positive difference of some kind. It may only be inside our own heads. It may even be a “fabulous fake”. But so long as we don’t cause harm to others or ourselves, there is always a chance that our words and our work will matter in ways that we never fully understand.

And with that, I wish you a very happy Friday. Thank you luka for sharing what you wrote.

Be well, each and every one of you.

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.

 

So, my neuropsych HAS been listening…

Okay, so, since 2008, I’ve been seeing a neuropsych for my TBI issues, and for years, it’s felt like they had no idea what I was actually talking about. I couldn’t detect a response from them or much indication that what I was telling them was actually sinking in.

Reading their summary report to my neuro, it’s clear that I’ve been wrong about that. They have been listening, and it’s a pretty moving experience to realize that some of the limitations have been on the side of my perceptions.

They’ve been listening and getting what’s going on with me.

I just didn’t realize it. All along, I’ve been missing that piece. Oh, well. At least I’ve haven’t been erring on the side of unjustified faith. Thinking that my neuropsych has been listening, while they haven’t heard much at all, would be far worse.

So, this is good. It’s a good place to be right now. There is a chance that my insurance will no longer cover these sessions, after the end of this year, so I may be looking at another six months with them, tops.

That will make me very sad. But life must go on.

My head is all in a whirl over this realization. Time to go for a long walk in the woods.