Brain Biofeedback

Another Piece to Reading Puzzle After Brain Injury

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I met again with the psychology prof who has helped me discover more pieces to my reading puzzle as I work to unravel why I have so much trouble reading after brain injury.

To recap: I have a diffuse injury, and so many areas involved in reading were damaged. But some areas were not. My health care team and I have worked on improving concentration, healing Wernicke’s Area, enhancing alpha brainwaves in the left frontal cortex. I’ve improved a bit. I can read more than one paragraph; I can skim and read Twitter; I can sort of see the edge of the big picture of an article. But I still cannot read a book in order to follow a plot, remember characters, acquire and retain new knowledge — and so I write what I’ve read about to try and help me retain it but mostly because a hard copy is my memory. The question is: which area or damaged areas are the sticking point? What precisely do I need to heal?

Clues came from the EEG assessments the ADD Centre conducted, other clues come from my meetings with the psychology prof. And always after one of our amazing discussions about cognitive theory, neuroscience, and my experience, I come away with a practical suggestion or two.

We began by discussing how the brain integrates information over space and time. (For some reason, I kept thinking about my book Time and Space!) Apparently, much has been studied about how the brain integrates information in space. For example, you look at a cup, your visual cortex sees the bottom of the cup, sees the lid of the cup as related to the bottom in space, and puts them together to create the information that you are looking at a cup.

The brain also integrates information over time. That’s reading! I thought. Yup. True, you see words in space, for they are next to each other or above and below each other on a page. But when you read, you take them in one after the other over time — if you’re a slow reader. If you’re a fast reader, well, it’s a bit more complicated. So let’s forget about fast reading; let’s just look at reading as if we’re a slow reader: one word at a time, sequentially in time.

The brain has a corresponding map of things in space. For example, the upper part of our visual field maps to an area below a sulcus (groove) near the bottom back of our brain. The bottom part of our visual field maps to the area above that sulcus. Yeah, the brain likes to reverse reality. It’s funny that way. That’s why we know a paralyzed right arm means damage in the left side of the brain. Anywho, bits of information in our visual field –- bits of what we see – get mapped into corresponding areas in the back of the brain. But then there’s another area, a little deeper in and towards the cortex or outside of the brain. This area also processes bits of information, except in combination not individually. So two points in the first area become one point in the second area. This is handy. I wasn’t clear if the processing happens over time; it seemed like it happens almost simultaneously. The brain sees both the bits and the combination of bits at the same time.

However, the brain has no corresponding map of things in time. We exist in a point of time. Our brains exist in a point of time. Our brains don’t exist in the past, present, and future all at once. So how does it map bits of information in time?

How does it map reading in time?

And how does it combine words, one after the other, in the way it combines bits of information in space?

We don’t know.

What we do know . . .

From my discussions with the ADD Centre, I understood that reading begins with the back of the brain processing the visual information – the words – then Wernicke’s Area receiving that information and translating the language of it into understandable meaning before sending it on to the frontal cortex where meaning is processed, old knowledge is accessed, new information and old are all synthesized together, and the whole thing stuck into long-term memory. I’m sure that’s a simplistic explanation. The sticking point to my reading problems could be anywhere or everywhere along that network.

After the ADD Centre used tDCS to stimulate healing of Wernicke’s Area, my ability to speak and listen improved markedly. Even though I must still prop up my ability to understand spoken words by watching people’s lips move when they talk, I don’t have to expend so much energy in simply understanding. That means I have more energy to compose and say my reply. Conversation with me is more fun.

But it did SFA for my reading.

And so there must be another sticking point. Early in 2016, the ADD Centre targetted my left frontal-prefrontal cortex (FP1-F3), and my headaches while doing my reading homework disappeared. My ability to organize also began to re-emerge from the dead. Unfortunately, having experienced extreme stress, my brain regressed. I had lost the foundation of relaxed, focused attention in the middle top part of my brain that they had trained in me back in 2005/2006, and we had to switch from training FP1-F3 back to enhancing 12-15Hz in the middle top part of my brain. Since gamma brainwave enhancement de-stresses me so well, we’re simultaneously enhancing it too. Although my resiliency and calmness are returning, unfortunately, my headaches from reading also have. I try not to think about that setback. Anyway, back to my conversation with the prof.

I talked about the effort of reading. This fascinated the prof, for there was no sign of the effort on my face while I was talking. How can I talk seemingly effortlessly yet have so much trouble reading? Well, listening is difficult too. Just because you can’t see the effort on my face doesn’t mean there isn’t a whole lot of conscious hanging on to words as my ears pick them up so that I can follow the conversation. If I want to ensure full comprehension, I have to make a very concerted effort to hear and understand, especially if the conversation is complex like ours was. But if it’s just social chit chat, then I can sort of coast.

In any case, listening is still not as difficult as reading.

Also, talking, like writing is output: both are easier than the input skills of listening and reading. He came back at me with the fact that talking includes assessing facial expressions, body language, monitoring what you’re saying, etc. Only later did I think about the fact that after brain injury, little of that happens, which is probably why we make for sucky conversationalists. But my ability to read faces and body language, to stay on point and not hop around like some crazed bunny, has improved markedly. So just because talking is multi-faceted doesn’t mean it’s still equivalent to reading. I can talk sans caring about conversation. I can’t look at words sans reading without caring about the fact nothing is happening if I do that unless I make myself OK with that (I did for awhile).

I think feeling the effort of reading is like feeling the effort for any ability or skill that’s damaged after brain injury. The brain learns, and while it’s learning skill X, it’s effortful. Watch a child learn to read: their brow is furrowed, their tongue is tucked into the side of their mouth, they mouth words with effort. Then watch an older child read: their brow is relaxed, their mouths may silently sound out words, but they read easier than the early reader because their brain has automatized reading. Only when they come across a new word will you see their brows come together, their lips move in exaggerated caricature and their tongues in wide gestures, several times, maybe even asking a parent or teacher to sound out the word a few times, before they master it. Even then, it may require several exposures to this new word before it becomes part of their effortless reading. Now watch an adult reader: they’re relaxed, nose deep in book, they’re absent from the real world, they’re deep inside the imaginary world, feeling the feelings of the characters. almost physically experiencing the fictional world they’re reading about, relating themselves to the characters, having revelations, learning sans knowing it. Time means nothing. That adult reader exists outside of real time and lives inside imaginary time. They can do that because reading, learning new vocabulary, putting the story into memory and adding to it, drawing out old knowledge and using it to understand the story – all of that the brain has become so good at it, it’s automatic. Anything that’s automatic takes less energy and frees up resources for the brain to do other things, in this case, engage emotions and get into the state of flow. And learn.

Brain injury has taken me from that adult reader to the youngest child, except that I retained my vocabulary. At first, I lost access to much of it; as I heal, my access is returning. At this point, it seems like it’s 100 percent. I know it isn’t, but it’s returned enough to have that façade.

As I talked to the prof and listened to his theories and explanations, I would repeat the concepts or spring ahead with my concepts. This puzzled him: how could I create concepts and understand complex concepts yet have so much difficulty reading? I told him the psychologist who saw me way at the beginning of my injury said that I had not lost my logic or reason, they were only stuck inside and I could still use them, albeit at glacial speed. My speed has increased markedly since 2000, and I have retained my old knowledge. I can access that, especially when conversation stirs old facts back up into the recognition memory zone. Logic and reason and my foundation of old knowledge acquired during decades of voracious reading pre-injury are the reasons I can create concepts and understand complex ones.

I explained the effort of reading and listening is in the hanging onto each word or idea as I move onto the next word. I have to effortfully keep them present in my mind as I add to them. It’s hard work, and it’s all conscious work.

We went on to discuss working memory. Way, way back in my university studies, I had learnt about short term and long term memory. Simplistically put, information goes into your short-term memory; whatever your attention decides needs to be remembered is shoved into long term, the rest forgotten. Working memory is a newish construct to me. I asked him to explain. There launched a rather interesting discussion, the upshot of which is that there may be no such thing as working memory in the brain. It may simply be a psychological construct with no physical reality. What I had learnt remains true.

He concluded that my sticking point must be at the basic elemental level, that is, the level of taking in bits of information and combining them. What if we took that block out? What if we combined those words for me? Pictures do that. It takes many words to describe a picture; but one glance to understand a simple picture or a prolonged glance to understand a detailed picture. In either case, the words are combined for the viewer.

There’s a new genre in town: the wordless graphic novel. The reading is in the looking at each image panel in sequence. He loaned me Cinema Panopticum to see if it would make a difference to my reading, to see how my brain would react.

The other issue I have is speed. I can follow people much easier than I used to, but if they talk too quickly, or when my speech speeds up all of a sudden – ack! – I get lost. I can compensate by either not caring I’m not following them and faking it or by asking them to repeat themselves. I’ve grown clever at being able to ask people questions so that they repeat what they said without it being obviously asked.

He suggested that I could use a podcast app that speeds up or slows down the rate of speech to assess how quickly I can comprehend the spoken word. I can take a passage and note down the speed. Then listen to it for x minutes and record at what speed I could comfortably comprehend it. Repeat that assessment regularly, say, once a month to track my progress.

When I first began my reading rehab in 2015, I had timed my speed in seconds per word. But now I time it in terms of paragraphs per number of minutes. Less work. However, it would be a good idea to time my reading per word every so often. Being able to see if I’m changing or not will give me an idea of my progress.

In the occupational therapy world, writing down goals and ticking them off is how they get those of us with brain injury to see that we are accomplishing things, because things take so frigging long to do. The same with timing podcast passages and words read. It would give me an objective number — those two methods would show me and my health care team exactly what kind of progress I’m making.

Brain Power

Reading Rehab Experiment: Reading a Wordless Graphic Novel

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The psychology prof I meet with occasionally to discuss reading suggested an experiment: read a wordless graphic novel. He loaned me Cinema Panopticum by Thomas Ott. We had been discussing how the brain takes in information one word at a time and then processes the same bits of information but combined in another area. The prof noted I don’t have trouble creating or understanding concepts; instead I have a lot of trouble ensuring my brain absorbs each bit of information — each word — and putting them together, depending on the complexity and length of the material.

What if we gave me something where the words were already put together, so to speak? What if we bypassed the basic problem of getting my brain to absorb each word and to combine the words? They say one picture equals a thousand words. Well, maybe in a wordless graphic novel, one picture isn’t equal to a thousand, but it sure is equal to many, maybe even one paragraph. Would that make it easier for me to read?

Today, I am sitting down with Cinema Panopticum to find out.

It’s a large-sized book I can lean on a cushion while I read it. Each page has a black background, and each panel is drawn in grey scale, like a pencil sketch. Fairly easy on my eyes, and fairly easy for me to perceive. Some panels are on the outer limits of how much detail I can comfortably perceive.

I used the same routine as for my regular reading homework: begin with three minutes of deep breathing to relax me and prepare my brain. Wear my reading glasses. Set the timer for 10 minutes. Begin.

I wasn’t sure how one “reads” a wordless novel. I have a tendency to look at images or photos quickly, and that’s what I did with the first panels. The first part of the story is also fairly familiar to readers: a girl wants to go to the fair, she only has five coins, all the rides cost more than five. But I suddenly realized a headache was coming on. I checked my timer.

Two minutes.

I remembered I’m supposed to take three deep breaths between each paragraph to ease any burgeoning headache or prevent one. But what is a paragraph in a wordless graphic novel? A page of panels? Two pages? Or is it better to go by time?

I took the three deep breaths but didn’t recall out loud. I read for another minute and a half. This time I looked at each panel longer, and a few of the panels I studied carefully, like I was the girl trying to figure out what she was looking at as she explored the fair. The headache began to encroach again, and I was at the end of the first section. I remembered this time I’m supposed to recall out loud. I spent another minute and a half recalling out loud section one — or is it chapter one? (no, the description of the novel says it’s the intro to four novelettes) — while I took three deep breaths.

I considered continuing on because I had been reading for only five minutes, but I had a small headache, and I was tired. Better to quit while ahead than try to push it. I’m looking forward to reading novelette one tomorrow.

Brain Biofeedback

Everyone on the Same Reading Rehab Page: Finally!

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 This floating piece of metal is huge. It dwarfs the Redpath sugar plant, which is no tiny building but itself an edifice on the waterfront where people gather to work and play, enjoy life.

As it is with that ship, so it is with reading.

Reading is a huge cognitive process, a monolithic problem that’s a part of, yet is bigger, than the injury of the brain that sits between you and the world.

It looms over the enjoyment of life.

Yet most people can’t see reading as a problem; they talk about that monolith as if it’s not a lake freighter but a tiny sunfish dancing on the waves.

It’s taken me years to first acknowledge that I could not read then to acknowledge the enormity of the problem then to accept it wasn’t going to go away and finally to nag and nag nag my health care providers to truly help me.

My neurodoc began back in January; CCAC said recently, OK, let’s connect you with an agency that helps people learn to read, preferably with one of their ex-high school teachers since it’s the long-form, cognitive aspect of reading you struggle with; and now after the ADD Centre reassessed me this past week, they are going to use my neurodoc’s reading methods with their materials in concert with brain and heart and breathing biofeedback protocols to heal what my EEG reveals as the reading blockage.

I am jumping up and down, screaming in delight!

For the first time, all my health care providers are working on the same issue to complement what the others are doing, with my neurodoc the “non-expert” in reading leading the way. Thank God.

For once I do not feel like a human being being pulled in three different directions as each provider works on totally different issues and don’t talk to each other so that they think I’m only working on what they are doing, which kind of leads to awkward situations where I get questioned on an area one of the others is working on as if I’m not, which then leads to my mind going blank as I grapple with this broadside so that it really does look like I’m doing nada when I’m not. And yes, I’m having trouble blogging and writing too. But I digress.

So my neurodoc is continuing to improve my stamina so that I don’t fatigue to the point of needing a nap and so my will headaches go away. CCAC will hopefully find an ex-high school teacher at a reading-rehab agency who will help me ensure I keep up with my homework, especially in light of my recent out-of-the-blue-forget-to-read issue, and perhaps offer other remedies to restore my reading, maybe even read rhyming poetry to me. And the ADD Centre will treat the damaged areas that are probably responsible for my reading problems while also working on strengthening my recall and being able to spot and understand subtle meanings under timed conditions.

Brain Health

Alpha Waves, the Creating Waves of the Brain

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I first heard about alpha waves during a sleep study I underwent many, many years ago. Back then, I didn’t know much about them other than they were intruding into my sleep. That sleep problem eventually resolved itself, and I thought no more of alpha waves until the day of my closed head injury. As a result, I learnt way more about alpha waves, small, interesting waves that feature in so much of our cognitive functioning, especially, for me, reading.

Note: What I’m about to write I learnt from the psychologists I saw for brain injury rehab and treatment and from my own experience. I have not been able to find complete, clear articles on the subject on the Internet.

Alpha waves are in the 8 to 11 Hz range of brain frequencies. People with higher IQs generally have alpha waves of about 11; the average wave frequency, I believe, is 10. Often with brain injury, one’s alpha waves drop in frequency. That is what happened to me. And it affected my reading.

My closed head injury dropped the frequency of my alpha waves to 8Hz from a probable 11Hz. Shortly after my brain injury, I started receiving neurofeedback treatments, similar to what is now called audiovisual entrainment. The goal was to entrain my entire brain to produce more alpha waves of a higher frequency. It helped but only temporarily. Over five years later, I began brain biofeedback. One of its goals was not only to stimulate specific areas of the brain that were not producing alpha waves normally to produce them, but also to raise the frequency back up permanently.

The effect of having one’s brain stimulated to produce alpha waves and alpha waves of a higher frequency can be pretty dramatic. My mind goes from blankness – and in the early years, it really was total blankness, not a thought rattling around in there – to thoughts popping up, coming at me, creating ideas, energizing my mind so that by the time I’m done an audiovisual entrainment session, for example, I have a blog idea, I have words for that idea, I have the cognitive vitality to write that idea down too. Usually, the dramatic effect is short lived, lasting hours. And these days, during an alpha-wave audiovisual entrainment session, I don’t experience such a marked increase in thought production. That’s probably because the brain biofeedback, and then spontaneous healing since then, gradually increased the baseline frequency of my alpha waves towards 11Hz; so my thinking – actual production of thoughts and ideas – improved to point that I no longer felt like a dullard, slow and blank, but a thinking human being.

Alpha waves do more than create thoughts and stimulate imagination though. They are also open awareness waves. They’re what help you see the buildings across the street, the cars passing you by, the squirrel hopping along by your side so that they don’t suddenly seem to jump out of nowhere. I found that audiovisual entrainment didn’t seem to really affect this aspect of cognition, before I began brain biofeedback anyway. My brain biofeedback plan included stimulating the left frontal lobe to produce high-frequency alpha waves (and depress either theta or delta waves, I don’t remember which, but I produced too much of both when awake anyway). After one of these sessions, I’d exit the clinic and suddenly perceive the street as though I’d never seen it before even though I’d walked up it only one hour earlier. It’s not that I hadn’t seen the cars or buildings earlier; it’s that they somehow were not there. Over time, I began to be less startled by things or squirrels and to perceive my surroundings normally. However, there was a more important reason for choosing that area for alpha-wave stimulation: reading. That area is one of three on the left side and back that are involved in reading. In reading, the open awareness alpha waves give you the big picture of the book or article. It’s what lets you know and remember what happened and gives you a sense of what might happen, to integrate what you’re reading in the present into the big picture that you’re building up as you go along.

I remember when I first had a glimpse of the big picture. It was like my mind suddenly expanded like an exploding star and I could “see” what I’d read earlier and how what I was reading right then fit into the emerging story. Unfortunately, the effect didn’t last. Further sessions consolidated some of that open awareness over time so that I no longer perceive just what I’m reading in the moment. But I still cannot hold the entire big picture in my mind, not even with my own writing. Which is why I rely heavily on an outline and on others to ensure the story flows.

Alpha waves are the waves of creativity and thought and understanding. Having them means having an active, engaged, creating mind. Without them, life is a bit boring and un-understandable.

Brain Health

e-Rehab: Organizing Good Lives for Those with Brain Injury

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E-Rehab. I’d never heard of it before this week, yet it makes so much sense. At last, I thought, two people in the health care community are acting on the fact that those with brain injuries need lifelong support around things like scheduling and organizing, long after they’ve left rehab and active treatment.

Although I know how to schedule, I have real trouble scheduling and organizing myself for reasons I cannot fathom. I can get a thing done in response to a stimulus, but not all the time. Still, how often can I rely on getting a stimulus from a phone call or e-mail or a well-timed random thought? Then there’s the problem that unless I write a ToDo down, I cannot even make a simple phone call. Basically, if I’m not scheduled and do not have a predictable routine, I do a lot of spinning my wheels, unnecessary stuff, staring into space as I try to think about what I’m supposed to be doing. I waste too much energy. Important things don’t get done, done late, or only half-done then never finished. Worst of all, I’m dead tired without having been productive or working on my priorities, and it doesn’t take much to tire me out as it is.

As of this year, I am finally getting once-weekly (less on holiday weeks) scheduling support. It has been God sent! The therapist comes to my place for one-on-one and face-to-face discussion of my schedule. Face-to-face is important for effective communication. We go over my priorities for the week and the most doable times to schedule them in. However, the rest of the week I’m on my own, and so if I run into a hiccup, which can happen for the most amazing reasons, like there’s an extra step we didn’t anticipate, I get stalled, and I have to wait until our next scheduled meeting. This is a big drawback of traditional support.

But e-Rehab allows for more frequent and more active support. If I run into a hiccup, the e-Coach could get me going again in a more timely fashion with no initiative required on my part (waiting for me, or most people with brain injuries, to have initiative would be like waiting until after the cows came home and were fast asleep). And, as well, if a client was having a bad day (or week), sessions can be easily rescheduled — no having to wait a week or more once you’re back on your feet and no having to try to remember how to get in touch with them to cancel a session either. (I do have the phone numbers for my therapists/managers somewhere around here…).

Basically, e-Rehab is all about organization that works. It’s about turning you from a sloth in front of the TV to a productive individual who’s part of society by filling in the piece missing from your brain.

With e-Rehab, you get assigned an e-Coach, who can be a rehab support worker, a friend, or a parent. You must have a computer and Internet access. They will help you set up your computer — and your e-Coach’s too if it’s not their support worker. They will even  build a computer that doesn’t require thought to use, simpler than a Mac. You need a calendar that someone else can view over the Internet, like iCal or, I think, Google Calendar. You need chat capability and video chat through Skype. Skype-to-Skype communication would be particularly helpful if your e-Coach is in a long-distance area code. That’s it. There is one useful option for those who have big trouble getting going: remote computer control so that your e-Coach can turn on your computer. More on that later.

At a prearranged time, from several times a day to once a week, depending on your need, you fire up your computer, launch your calendar, turn on chat, and connect to your e-Coach through video chat. S/he does the same. The face-to-face aspect of video chat makes it much easier to discuss your schedule and understand what your e-Coach is telling you than if done over the telephone. Amazing that the e-Rehab folks get this, get that video chat closely mimics the ideal scenario of the Coach being there in person, that many of us understand English better face-to-face, lips in full view, than over a phone. Once you’re connected, you discuss your priorities for the week; you may also discuss your overall goals and how your daily or weekly priorities will help you meet those goals. I’m over 10 years post, and only this last month was I ready to discuss overall goals, and short-term ones at that. So goals may or may not be relevant. Your e-Coach will need to be aware of basics like travel times, what things fatigue you fast and what don’t, rest times, and so on during scheduling. The idea is to help you organize your events and tasks in a doable way, not in a wouldn’t-this-be-great way. There’s nothing worse than being ambitious, trying to fit in as much stuff as “normal” people, and failing miserably. You do what you can manage. As you and your e-Coach discuss your schedule, you type in the events and tasks so that you retain a sense of control over your schedule. S/he may need to prompt you to do so but you typing is a great way to gain a feeling of mastery over your own life. If the e-Coach types them in because it’s faster or easier, then it perpetuates the idea that you’re a child who cannot become independent and self-directed.

Even with all this help, there remains the problem of actually checking your schedule. If you don’t check it, you can’t do it. You may not have trouble with remembering to check for days at a time, but then for some mysterious reason, if you’re like me, you’ll totally forget to do so one morning and will keep forgetting until suddenly you realise days later you’re supposed to be reviewing the schedule first thing. There’s now help for that issue too.

I dreamed of various solutions, especially the idea of having a smart computer that comes on as I enter the kitchen for breakfast. It would say, “Good morning Shireen. Let’s review your schedule and adjust the time of your first event, as I see you’re starting earlier than usual today.” But now there’s a real solution: with remote control access to your computer, your e-Coach can turn on your computer, which is sitting beside your bed, pop up on your screen, and say, “Rise and shine! Time to get up and review your schedule for today.” This is the first time I’ve heard anyone in the health care community acknowledge that getting going is a problem that needs a solution and has come up with one. It’s not about depression; it’s about initiating and motivation — those mysterious processes in the brain that are royally screwed up in those with brain injuries.

So you want to know who these amazing people are? Unfortunately, I don’t know what the company is called because the guys who presented e-Rehab at the BIST meeting (Brain Injury Society of Toronto) didn’t hand out brochures or business cards, and they didn’t stay afterwards to take questions! I didn’t take notes either because I can’t write down stuff and listen at the same time. However, with today’s technologies, and a willing computer-savvy partner, anyone with a brain injury could set this up. It’s an exciting first step. It’s the first indication I’ve seen that someone understands that just because you have a brain injury and are missing this function doesn’t mean you cannot be independent and productive, does not mean you cannot have a purpose. It’s the first time I’ve seen those in the health care field make a concerted effort to learn the technology so that they can help those with brain injuries. Up to this point, the Occupational and other Therapists I’ve met have been pretty much techno-ignoramuses. I’m appalled at how little they know about computers and how they don’t even see them as a tool to liberate their clients. They see no need to learn how to use computers and handhelds themselves. The therapist I have now is unusual in her openness to computers, but even she needs to learn more about what technology and computers can do to help us. The e-Rehab folks are leading the way. It’s about time.

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Brain Health

Attention, Attention, We’re Talking Attention and Traumatic Brain Injury

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OK folks, pay attention, it’s attention lesson time. I know, I know you go through life not having to worry about such a thing, unless you have ADD or a screaming baby. But when life smacks you across the head, ringing your brain, it becomes über important to you and those around you because it’s gone. And its loss can become a source of a lot of BS pontificating and judging from those close and sometimes far who’d rather not know about it, pretend nothing’s changed, and accuse one of making excuses. Ahem. (Attention is also better understood by some psychologists than others in the brain injury field.) So here goes.

According to the Toronto Rehabilitation Institute and the 1994 McKay Moore Sohlberg paper Understanding Attention Impairments, there are five kinds of attention: focused, sustained, selective, alternating, and divided. I had difficulties with all five after my closed head injury, but brain biofeedback restored some of them. However, it has made little difference to the attention skills required when in groups, crowds, and at parties. Those are the ones I’ll address today. So listen up all you people who won’t read this because this is the last time I’m explaining attention issues.

Before I begin, I ought to give a little background information on fatigue and traumatic brain injury or closed head injury. Imagine a certain task takes x amount of energy. After a brain injury or insult, every task takes 10x amount of energy — at least. Whether it’s your heart beating, breathing, eating, nuking oatmeal, brushing teeth, opening the door, dressing, walking, navigating the TTC, talking, answering the phone, conversing, reading, writing, paying attention in a crowd, everything takes more energy, way more. When the brain has to execute a skill or function it no longer has or is now poor at doing, it takes even more energy. That drain is felt in the moment and oftentimes the day after and the day after that and after that as the brain recovers from the work it did. And so trying to use an attention skill that is lost or weak saps one’s energy quickly and for a long time afterwards too. That’s why priorities about when to exert which attention have to be set.

One pays attention to a task or person with one’s brain, but it’s done through the senses. Although this post is about attention in general, attention is mediated through each sense differently, depending on the person’s strengths and weaknesses. For example, one can have little problem paying attention to auditory stimuli but a lot to visual stimuli.

Selective
: This attention skill allows you to ignore distractions in the environment and pay attention to important information, like the person you’re listening to.

As anyone who’s sat across from me at a coffee shop, with me facing the window, knows, I get easily distracted by cute dogs passing by, people walking, cars zipping across my field of vision, changing traffic lights. If I face indoors, then I get distracted by the noise of conversations, the servers, the odd quirks of people eating. If I face a wall, I can focus better, but I hate facing walls. Must be some old claustrophobic thing. Regardless, if I can’t see a person’s mouth, I have a much harder time understanding them because it’s harder for me to discriminate or select between auditory stimuli. It has nothing to do with my hearing because….

I have excellent hearing, always have had. But like with any typical person with a closed head injury, my senses were ratcheted up, filters damaged, and I hear everything: the clock ticking, cutlery dropping, plates being clanked, wrappers crinkling, people coughing, punctuations of laughter, footsteps. Those noises grab my attention like someone grabbing your coat collar. If those noises are in a theatre, they’re like gunshots to the head. If someone applauds behind me, it’s a physical sensation on my ears and back. They compete with what I’m supposed to be focusing on. And that’s just one sense. There are three others also ratcheted up — vision, smell, touch —  taste is just odd. If auditory and visual noise is all around me, like at a party, it’s like a giant challenge to my selective attention and a great sucking vacuum on my energy levels.

People with impairments in selective attention may become easily irritated and frustrated by such extraneous noise.” (From McKay Moore Sohlberg paper)

Grumpyface — from the Doctor Who episode The Time of Angels — is a good descriptor!

Alternating: This attention skill allows a person to switch their attention easily from task to task or person to person in a group or party. Apparently, this is a high-level attention skill.

I find it takes me a moment when I have to switch my attention. When someone suddenly forces me to switch attention by popping up behind me, asking a question, demanding I switch attention instantly from what I was doing or saying, without a gentle intro hello, it irritates me and actually slows me down more. Of course, this happens naturally in parties when someone will appear from seemingly nowhere (the nowhere part is an alpha-wave open-awareness issue where lack of awareness leads to easy startling — see how problems start overlapping?) and want to interrupt. This is rude from where I come from, but pretty commonplace here. A normal person may at worst get a bit anoyed with the rudeness of the interruption, but a person with a brain injury will also feel discombobulated and overwhelmed at the sudden need to switch attention. Irritation times 10!

Divided: This attention skill allows a person to pay attention to two or more things at once. Another way to look at this is multitasking.

A common divided attention scenario is driving a car and listening to the radio at once (frankly, I think simultaneous attention would be a better moniker, but I digress). Well…with poor divided attention skills, I can’t be a passenger in a car and listen to the radio at once, especially when the car starts to move at 50 or 60 kph or more. Then I start feeling overwhelmed, like being in an IMAX 3D movie theatre watching Star Trek and suddenly the screen goes to warp speed and Kirk is calling for Spock behind my seat and popcorn has been dumped all over me, all at the same time.

I first fully understood I had a problem with divided attention when my Dad was talking to me while I was trying to slice bread. Couldn’t do it. I still have trouble listening and slicing at the same time.

So imagine having deficits in these three attention types and being at a party — an event full of distractions by its very nature — with every sound cranked up to ultra-high in my ears, with the visual distractions of brighly-coloured people moving around like flashing beacons screaming “watch me, watch me”, and the smells of food and perfumes and shampoos shoving themselves up the nose, all demanding attention. Add to that people naturally placing demands on weak or nonexistent divided, alternating, and selective attention just by trying to converse with you or you trying to mingle. Fun, wow. Yet some people still insist I should show up to such shindigs because that’s what I used to do pre-injury and if I don’t, it’s proof I’m using “excuses” or don’t care.

The compassionate, human response is to understand these issues and then to listen, listen to the one with the brain injury when they say “I’d rather see you over coffee, in a quiet place, one-on-one, where I can be myself not Grumpyface, and when I won’t have to spend days recovering just because I chose to socialize.” The alternative is to be unaccepting and so build a stone barrier between yourself and the one with the brain injury.

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The other two kinds of attention are focused and sustained.

Focused: This is the basic attention skill where one notices objects or events and specific sensory stimuli in the environment.

Sustained: This attention skill gives one the ability to stick with an activity over time, like reading a book or writing an essay or commuting on the highway. Inconsistent performance, varying from excellent to nonexistent, like one day remembering a phone number long enough to dial it, another day not, may be problems with sustained attention.

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Brain Health

Assessment at the ADD Centre: The First Step to Treating Brain Injury

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Last time, I wrote about how I found the ADD Centre and what it did for me in treating my brain injury. But I didn’t get into the nitty gritty details of how the assessment and treatment goes. So here’s a rundown of the first step: assessment.

Dr. Lynda Thompson, the Director of the ADD Centre, and her husband Dr. Michael Thompson conduct their parts of the assessment separately. Neither watches what the other is doing nor sees the results until they’re completed. That way, they don’t inadvertently influence the others’ tests, leading to a more solid diagnosis.

I met first with Lynda. She began with an intake interview. I had spoken about what had happened to me so many times because of the endless round of quacks my insurance company had sent me to under accident benefits, that I could have answered the questions in my sleep. Unfortunately. But the big difference for me was that she was genuinely interested in helping me. She wasn’t looking to twist my story round, and she was paying attention. It’s amazing what it does to your confidence when a therapist or doctor pays attention to you and takes your concerns seriously.

After the interview came the “boring” test, as she put it. I expected to ace the test, for so many had told me to “get over it”, “move on”, “you don’t have brain injury”, “your problem is you’re talking about it too much; if you stopped talking, you’d get better”, “you look fine to me”, “you look the same as before the accident” (that last one when I looked like the Michelin Man still puzzles me). And these were said by my closest friends and family; the insurance hacks’ put downs were on top of that. I can count on one finger the number who didn’t doubt the diagnosis at some point, who didn’t pretend I was better than I was, who didn’t say rehab was a crutch, who didn’t…well, you get my drift.

But back to the test. Lynda sits you down in front of an old CRT monitor, the kind that’s black and monotone green (or was it orange?). Once she sets you up, she leaves you alone in the quiet room to do the test. You put on a pair of headphones and place your hand on the mouse. You then see good-old DOS graphics pop up on the screen. (It was comforting in some way, and since the test works well, why update it to the latest incarnation of Windows?) And then it begins.

The computer instructs you on how the test will run for the next 15 minutes and you practice. I don’t remember the specifics of the test, but it has to do with responding to seeing “1”s and “2”s appearing on the screen or being said in your ears. The computer measures how quickly — or not — you respond and when you respond to the stimulus of seeing a “1” or a “2”. It was boring. It felt like forever, but was only 15 minutes. I thought I had missed a couple, maybe, but I figured it would show my concentration was hunky dorey, after all I’d heard that often enough. Was I mistaken!

The next test was closest of all of them to what the treatments would be like. You sit in front of another computer in another room. Lynda places an electrode on each of your ear lobes and then one on top of your head. The key to good connections is cleaning. They use an abrasive scrub to clean your skin where they’ll be placing the electrodes. Lynda goes at it vigorously. A little painful, but it gets the job done every time in one go. I was soon to learn I much preferred that method over the tentative gentleness of others that meant repeating the cleaning and placing the electrodes all over again as it never connected the first time. After she cleans, she puts electroconducting goo on the electrodes and puts them on you. The electrodes are plugged into the computer, and again you sit and face the screen. I don’t remember anything more about that test, which is kind of odd as I’ve done it about 4 times.

The last test is the best, as in, for me a former psychology student, fascinating. Too bad I was too zombified to appeciate it the first time. Michael does this one, with one of the trainers assisting. You go into another room, where the trainer hauls on a cotton-bathing-cap looking thing with 19 holes in it. It fits snugly over your whole head. She then plugs it into the computer and up pops a graphic of a head with electrode points on it. Each point starts off red on the screen, red for the fact it isn’t connected. She squirts the electroconducting jelly into each hole and plays around with it. Since there is no mirror, I cannot see what she’s doing, only feel, but I also can’t see what a dork I look like either. A bonus, if you ask me. As each of those “holes” connects with my scalp and picks up the electricity generating from within, it turns first yellow then green on the screen. For me, this became a painful process. Not painful physically, but painful in the tension of wondering if it will-connect-oh-no-it-just-disconnected-oh-now-it’s-green-again. Once all 19 points are connected, then the rest of you gets hooked up to the computer: breathing, pulse, skin temperature, muscle tension, all are monitored and noted.

Michael has you sit back, relax your jaw. He has you open your eyes, close your eyes, read, do math in your head (I did better than most accountants! It was the one and only area where I relaxed and my issues clearly were not math ability but focus inability.) He also conducts other tests on the computer. Sometimes, you can see all 19 points of your EEG scrolling across the screen, and you have to not worry about some of those low-active areas. It may not be because that part of your brain is off in snoozy land, but because whatever it is you’re doing doesn’t need it. Well, in my case, Ha!

The EEG readings are then fed into two computer programs that I know of. One generates a bunch of results about the kind of waves your brain is producing under each of those 19 points; how awake those areas are; how much delta-wave activity each is producing; how coherent or not the different sections of your brain are. That last is crucial. A brain whose sections work as one is going to be slow, but a brain whose sections are wildly discoherent is not going to function well either. At the time of my first assessment, they didn’t do coherence training to fix those coherence problems, it was so new from what I understand. During the second half of the second year of my brain biofeedback treatments, they did with amazing results. Anyway, the second program maps the brain and shows it in 3D. You can take out sections and see deep inside the brain, just like an MRI scan, except this one is based on electrical activity, the primary means of communication within the brain. Only at the neuron ends do chemicals come into play, and that’s in response to an electrical charge from the neuron. As you can tell, I think EEGs should be a de facto means all doctors should use to assess brain function. This program pinpointed clearly the areas of my brain that were not functioning normally; it told Michael, along with the first program, why I was having so much trouble reading when I don’t have trouble interpreting the squiggles on a page as letters or words.

Based on the results of all the tests and what my main concerns were, they devised a treatment program for me. They told me that without a doubt they could improve my concentration, that they could work on my acquired learning disability. But they weren’t sure about helping me with my reading; still they would give it a try. They were excited about the possibilities and booked me in for brain biofeedback treatments beginning in September 2005. While I waited for the first available spot, Lynda suggested I purchase an audiovisual entrainment unit to use at home. I bought that from Edmonton-based Mind Alive immediately. I still use it.

The assessment told me I wasn’t crazy; instead all those people who denied my difficulties were the crazy ones. The assessment gave me hope that this dark cloud would lift, that I would not be a zombie for the rest of my life. The assessment gave me back my dignity as a suffering human being. And that was only the beginning.

Brain Health

The Toronto Catholic Board Ponders Axing The Arrowsmith Program

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One of the things I found incomprehensible was why the medical model of brain injury rehab insisted on compensating strategies to cope with cognitive deficits over trying to treat the brain itself. First off, compensating strategies are piss poor ways to overcome the problems of deficits in the higher cognitive skills like reading; and second they make you feel like a diminished human being. I mean, who wants to feel like they’re studying for a university exam just to read an Agatha Christie?

And so I’m astonished, but not surprised that the Arrowsmith program, a program that treats learning disabilities rather than compensating for them, is considered controversial. Kudos to the Toronto Catholic School Board who ten years ago decided to adopt this program in order to help their students who were struggling with learning disabilities. As a result, these children were able to experience the joy of reading without endless struggle, of writing without having to use all sorts of semi-useless methods to compensate, of learning in the classroom as easily as their classmates. It is to the shame of the Toronto District School Board that only now are they considering adopting this program.

Unfortunately, the Catholic Board is considering axing it in light of their recent budget issues. But not only does this program not cost that much, but it prevents the spending of much more money to assist these children later in life, the loss of potential, the loss of esteem.

When I finally found treatment for my brain injury, treatment to restore my lost cognitive functions, treatment that worked, I felt like I’d found my sanity again. That’s when my self-confidence started to improve. That’s when my acquired fear of reading started to lose its grip on me. I suspect these children feel the same, but perhaps moreso because they’ve never experienced reading and writing as non-learning disabled children have. To the Catholic School Board, I ask that you not take that away from them, and to all school boards, I ask that you give all these children the opportunity to be treated.Technorati Tags: ,