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!

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…!

The implications of these research findings are enormous.

http://www.huffingtonpost.com/sandra-bond-chapman/changing-a-common-belief-_b_7588400.html

No longer can we falsely assume that brain injury survivors can recover only for a certain period or that they are destined to regain only a limited number of skills. The potential for improvement is far greater than previously believed possible. With the right interventions, TBI survivors can continue to make progress repairing their brain’s health and their lives for many years. That knowledge should significantly change the way we think about–and address–this enormous public health challenge.

TBI Alert: Rehab Program Improves Memory and Mood, Even Years After Injury

Work it!

From Neurology Now

Tuesday, June 09, 2015

TBI Alert: Rehab Program Improves Memory and Mood, Even Years after Injury

BY REBECCA HISCOTT

Depression and difficulty concentrating are some of the potential long-term symptoms of a traumatic brain injury (TBI), but a specially designed cognitive training program may help improve these and other symptoms—even 10 years after the injury. That’s the finding from a new study from the University of Texas at Dallas’s Center for BrainHealth, published in the journal Neuropsychological Rehabilitation.

The researchers developed and tested an eight-week, 18-hour cognitive training program called SMART (for “Strategic Memory Advanced Reasoning Training”) in a group of TBI patients, many of whom had sustained the initial injury more than 10 years earlier.

The SMART Approach to Rehab

For the study, 31 TBI patients between the ages of 19 and 65 participated in the SMART program; 13 were veterans. All had experienced TBI more than six months earlier, with two-thirds experiencing the injury more than 10 years earlier. They all had chronic cognitive or psychological symptoms, including difficulty carrying out daily tasks, grasping complex concepts, or problem-solving, which affected their ability to work full-time or find employment.

During the program, the patients learned strategies for improving their attention, reasoning, and innovative thinking skills. For example, the researchers explained, patients with TBI have trouble multitasking, which can tax the injured brain. In order to improve concentration, investigators taught the patients to identify and block out distractions in order to better focus on a single task. In turn, honing these attention skills helped the patients read complex articles and tease out the core ideas and messages. The participants were also asked to apply these strategies in their daily lives, for instance by reading the newspaper and identifying the most important parts of a news story.

The researchers compared the effects of the SMART program to those of a brain health workshop, in which 29 people with TBI learned basic facts about brain health and brain injury, but did not learn any specific strategies for dealing with the symptoms of TBI.

SMART Improves Memory, Thinking, and Mood

After eight weeks, people in the SMART program had improved their ability to grasp abstract concepts, as measured by a reading test, by 20 percent and improved their scores on memory tests by more than 30 percent, the researchers reported. The patients also reported a 60 percent decline in symptoms of depression and stress, and a 40 percent reduction in symptoms of post-traumatic stress disorder (PTSD).

These cognitive and psychological improvements could also “have a positive impact on one’s confidence, cognitive control, sense of well-being, and self-worth,” the researchers wrote.

Brain Imaging Shows Signs of Improvement

As part of the study, the researchers also administered magnetic resonance imaging (MRI) scans to all of the participants, looking at blood flow in areas of the brain linked with stress and depressive symptoms, such as the frontal lobe, the anterior cingulate, and the precuneus. In people with TBI, blood flow to these regions is decreased, which is considered a marker of injury severity and is linked to worse performance on cognitive tests and symptoms of PTSD, the researchers explained.

Patients who participated in the SMART program had a more than 25 percent increase in blood flow to these brain regions, suggesting a healthier and less-stressed brain, which could also explain the improvements on psychological health, the researchers said.

Effects Last for Several Months

The benefits of the SMART training program persisted when the researchers administered another set of cognitive tests and MRI scans three to four months after the program ended, noted lead investigator Sandra Bond Chapman, PhD, founder and chief director of the Center for BrainHealth, in a news release.

Need for Further Study

The results are promising but preliminary, and will need to be verified in rigorous future studies, said Dr. Chapman and her colleagues. If future research confirms the results, SMART could be added to the growing arsenal of cognitive training programs that have shown promise for treating the long-term effects of TBI, the researchers said, with the ultimate goal of helping people with TBI lessen their symptoms, rejoin the workforce, and lead happier, healthier, and more productive lives.

To learn more about traumatic brain injury and how it’s treated, see and browse our archives here.

 

Transformation: Benefits of mindfulness meditation for fellow head-injury survivors

Gold Mind Meditation Project or my life experience with TBI, for over thirty years now.

(Transformation: Benefits for fellow head-injury survivors) By Had Walmer

Brain-injury is an invisible disability, not easily noticed from the outside like a wheelchair or crutches. It’s a complex injury to the our brain and associated neurosensory systems. Known profoundly from inside each survivor experiences a unique array of symptoms. Gold Mind Meditation Project empowers you to transform your relationship with this changed condition and actually thrive in life through learning the Power of Mindfulness.

I speak from personal experience. Returning to college years ago, I was involved in a serious car accident. Jaws-Of-Life were required to free me from the vehicle. I got a skull fracture and was in coma for seven days. My brain swelled in my skull causing much secondary damage after the crash impact. When I came to I had severe traumatic brain injury (TBI), diplopia (double-vision) and amnesia. In an instant I was not who I used to be.

Since that time I’ve lived with continuing challenges of TBI. I struggled to complete my university degree and to get on with my life. I graduated from the university and then within a few years experienced frustrating failure in the loss of several jobs due to cognitive deficits:
weak learning and memory, poor boundaries and speech pathology. Often my perceptions were very cloudy – I was very unaware of what I could do or be. My friend who is an Occupational Therapist pointed out that this condition was the direct result of TBI, what TBI is, and that I can actually have a powerful say in the process and success of my rehabilitation.

TBI has often been misdiagnosed and thus poorly treated. In expensive and top-of-the-line rehabilitation programs I learned of my ‘cognitive-deficits’ and ‘compensatory coping-strategies’ for those deficits. These strategies are well-intended rehab but fell short of knowing and actually addressing the best possible well-being for me. I had to learn this inner transformation for myself. In my own explorations I have learned to sift gold (possibilities) from the gravel of my life experiences in order to find meaning, value and purpose for myself. Mindfulness Meditation is the key, learning to be brightly alive and awake in the present moment.

I’ve learned the meditation practice called Insight Meditation. Regular practice helps me be concentrated and focused, capable of sustained attention to chosen activities and to hold said purpose in mind. With Mindfulness practice we take a stand for our inner wellness, solidly at peace beyond the damages of our trauma and change. This is a path of being at peace with and authentic in your life, now. You can be ready to pick up whatever is next in your life path, with greater ease and joy, skillfully. You will get back benefits in proportion to the time that you put into the practice of mindfulness mediation, empowered to strongly face challenges.

Mindfulness practice can lead to brain healing (‘neuroplasticity’- the brain can heal itself). I am now choosing to live my life intentionally and more skillfully – making peace with this malady and finding the healing I need with present moment awareness. You can do this too. This is the start of a new path for you! Being calm and clear – activating your mind’s inherent strengths. Loving the life you live now.  Really!
Had C. Walmer hwalmer@gmail.com (503)332-3046

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.

 

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.