As I mentioned before, going straight to the behavioural model after sustaining a brain injury is an exercise in frustration for the person with the injury, especially when it comes to reading. Perhaps it works for infrequent readers, but we live in the information age, the knowledge economy. You cannot participate without reading. And compensating strategies alone, without knowing the organic cause, are insufficient to get you participating. You can only achieve that with treatment (and then the strategies if still needed.) In short, the goal of all brain injury rehabilitation should not be surviving on one’s own but on reintegrating fully into society. There’s just one problem: no one seems to have devised a treatment protocol specifically for reading issues that are beyond the recognizing-letters-and-words phase. But I looked anyway and eventually found these methods.

Brain Biofeedback

I’ve written about this before (and must finish up that series!). It’s an active protocol using computers, guided by a trainer that requires you to use your brain to effect changes. It’s exhausting but worth it. After I was assessed at the ADD Clinic, where I received brain biofeedback, we discussed what they could do for me. They bluntly told me that they didn’t know if they could improve my reading. However, they would give it a try. Shades of what my father told Judy Taylor, which told me I’d found a place that truly cared about its clients and dared to be innovative to help them.

Basically, brain biofeedback works by connecting you to the computer via stick-on electrodes — two on your ears, one on the scalp above the brain location to be activated — in order to increase the desired brain waves and decrease unwanted brain waves through playing a computer game.

They have good research proving this method works to increase concentration, stamina, and persistence, all cognitive skills one needs to read. By improving my concentration, stamina, and persistence, the biofeedback increased my reading time from 5 to 10 minutes (in a day) to about 20 in one go. But reading also has a learned emotional aspect. Because of repeated failure and frustration, I had developed a fear of reading. The biofeedback got rid of the fear. When we worked on increasing the frequency of my alpha waves, I had this surreal moment of reading a page and my mind opening up suddenly to “see” everything I had read up to that point, the picture of it that is, not the actual words. It didn’t last long. But since then, the ability to see the big picture has been slowly, slowly returning. The biofeedback also started a chain of spontaneous healing that’s lasted to this day and that has occurred in every area that’s been injured. However, if I try to read twice in one day anything that is at a higher grade level than an Agatha Christie, that is new, that I must learn and retain, I literally zonk out for up to 2 hours on the couch. It’s as if my brain has gone into overload. Also, if I’m going to respond to written material (like an e-mail or article I want to blog on) or if I must follow something to learn about, I have to reread it a few times. Rereading is easier with each pass. But there are days when I’d just like to read already!

Audiovisual entrainment (AVE)

As I wrote earlier, AVE is a way to entrain the brain into certain brain wave states. It does that by using the brain’s natural input areas of ears and eyes, creating audiovisual patterns of sound and light. An AVE device will have several preset protocols or sessions, each of which entrains the brain into producing different brain waves, which leads to improved focus, creativity, relaxation, sleep, and so on, depending on the brain wave(s) entrained. Although an AVE device is not meant to improve reading, by stimulating certain brain waves, it does help. I am not sure which session is the most beneficial, but it’s generally believed that relaxed, focused attention (not the hyper, adrenaline-fuelled kind of attention we’re so familiar with) is best for learning. That relaxed, focused attention comes from SMR or 14Hz brain waves. Since I also have ADD-like problems, the ADD session of the MindAlive AVE Health-Canada-approved medical device helps as well. It entrains two levels of beta waves and alpha waves. Entraining alpha waves alone helps me with the big picture and with creativity – synthesizing old and new information into new ideas.

It’s best to read soon after using a session. Alternatively, you could use a relaxing alpha-wave session afterwards to recover from a bout of reading. In general, AVE energizes the brain. But you have to be careful if you have a brain injury because it can push too much, and you’ll crash. I find it best to decide beforehand what my day’s schedule of activities will be, decide on which AVE session is best, and then no matter how good it makes me feel, stick to my schedule and don’t do one thing more. Even though the effect of a session may only last hours (or days), I feel that over time its benefits accumulate so that you can progress to more demanding sessions, for example, from Brain Brightener for seniors to ADD for children/adults.

Increase Blood Flow to Increase Energy for Reading

As we’re beginning to know, especially after hearing the same thing over and over again from those with MS who’ve undergone the Zamboni treatment, reduced blood flow leads to increased fatigue. Anything that can increase blood flow may alleviate fatigue and thus make reading easier, certainly make the brain function better when it’s getting full nourishment in real time. For sure, opening up blocked veins helps blood flow. But blocked veins may not be the issue here, plus surgery is risky. Far better to use non-invasive methods. Meditation improves blood flow as does exercise. I’ve been told that cranial electrostimulation (CES) is another way to improve blood flow, and Hyperbaric oxygen therapy may too. At this point, it’s all experimental. But that isn’t a reason not to try if you have the money, the time, and/or the energy. Except for occasional temporary dizziness, there don’t seem to be side effects. But always, always check the literature to make sure.

Food and Moving Your Body to Increase Energy Available for Reading

Glucose: Brain biofeedback is one of the most mentally demanding activities I’ve done since my brain injury. Before I started it, I had no interest in drinking pop; afterwards…well, I couldn’t guzzle down a fizzy, sugary drink fast enough. I always felt better and didn’t experience the low that usually follows. No surprise really because unlike the rest of the body, the brain consumes glucose for energy. A quick way to refuel a tired brain is to eat or drink a shot of glucose, and I guess my brain decided that pop was it. (I lost all desire for it as soon as I stopped the treatments.) One can also have glucose tablets or dextrose syrup or dissolve a teaspoon of honey in a small glass of water for a quick hit of fuel for the brain and a quick recovery of energy. I’d like to point out to those who don’t have a brain injury that the fatigue induced from overuse of the brain makes you feel sick, it freezes you in its tracks, it empties your mind of all thoughts — you’re literally like a snoozing blob staring vacantly at the TV. Getting some glucose in feels very good, and doing it in response to increased mental activity meant rarely did I feel a down after the recovery. Of course, you’re probably asking, er, won’t you gain weight? That is a problem. Fuelling up prior to mental activity with complex carbs in order to create a slow increase in blood glucose doesn’t solve the problem either. First off, since your brain won’t need extra amounts until during or after the activity, it won’t take it. Your body will, right into the fat stores. Second, it’s difficult to time how far in advance you’ll need to eat something so that it hits the brain at the exact moment it needs it and so will take it ahead of your fat stores. Twenty minutes is standard, but you may have noticed that one’s internal organs don’t exactly work in standard fashion anymore. So if after mental activity, you feel like death on toast, I wouldn’t be critical if you gulped a sugary drink or had chocolate!

Coffee and Chocolate: An ADD expert said once that his Ritalin is coffee. There’s no doubt that it perks up the mind. The problem with coffee is it’s addictive physiologically, meaning that if you drink the exact same amount every day at the same time of day with the same preceding cues, then you’ll develop a tolerance for it, and it’ll become less effective. You’ll then have to up your “dose” to get the same result. So what I do is drink it at different times of the day, sometimes skip a day, and consume different amounts from half a cup to a cup. Chocolate too can perk a person up, as well as making one feel good. I remember being advised in a University of Toronto nutrition class to have a bar of chocolate 20 minutes before sitting for a university exam to enhance performance. Chocolate has other good effects as well. And it’s just plain enjoyable to eat.

Water: A dehydrated brain is a tired brain. Drink up! Nuff said.

Exercise: People with brain injuries need to exercise but our ability to exercise is often impaired. I discovered last year that I’d been exercising too much; instead of energizing me, it was making my physical issues and mental fatigue worse. However, exercising too little had the same effect. The best way to figure out what your tolerance is is to find a trainer who’s familiar with brain injuries and then experiment. For me, we took my exercise down to 10 minutes, 3 times a week. That’s the minimum I need to benefit from exercise. We tried taking it down to 8 minutes, 3 times a week, but I worsened. Then we slowly increased my exercise by 1 to 2 minutes per session, and after a few weeks, added a session. Certain kinds of exercise deemed too strenuous are nixed. This is an area that doctors know so little about, and the research has yet to catch up with what’s known in the field, it seems.

Compensating Strategies for Reading Problems

In addition to what you learn in rehab — highlight, take notes, write notes in the margins, cover off text, pace yourself, read for a short period of time, reread — there are additional ways to compensate and to make reading slightly easier. These are ideas only and may not work well enough to take you back to where you were, but they have made some diff for me after I underwent brain biofeedback. In other words, I believe you need to reach a certain level of functionality in reading to benefit from compensating strategies.

Format

The easier it is to perceive the written word, the less energy your brain requires to see and understand the words on a page, the more that’s available for processing, retaining, learning, and synthesizing. Paper is easy on the eyes, but has several drawbacks with regards to comprehension. With the advent of eReaders, we now have a choice of format.

Traditional compensating strategies include masking text that you’re not reading, folding newspapers and magazines up so all you see is the column of text you’re focusing on. eReaders are like automatic masks and folds. You only see the text and as little of it as you need to be able to focus and read well. With the advent of the iPad, magazines are starting, barely, to come out in interactive formats that with a click of an icon, all you see is the text. No distracting photos, no distracting ads, no distracting computer or browser bars. However the screen, like that of computers, is harder on the eyes than the eInk screens of eReaders, which mimic paper. That means your brain is going to get tired faster. Computers are a more difficult medium as they have so much real estate and sometimes have eye-straining screens, that even with software that shows you only the text on websites, it’s too hard to take in.

Pain Control

If one is injured in a car crash, one usually ends up with some area of the body hurting. If so, pain control is crucial to being able to focus. If your body is distracting you, you’re not going to be able to read well. The usual pain medications have always had zero effect on me. So after this injury, I turned to acupuncture, physiotherapy, massage, weight lifting, AVE, and the Stress Eraser, which cues deep breathing, an effective way to relax and reduce pain. I also tried CES, but I believe the device I was given way back when was not the most effective kind. I am trying a new one from MindAlive that comes with micro-TENS as well.

Practice

Like learning to read the first time when you were 3 or 6 years old, you gotta practice. But when you have to practice something you were so very good at, it’s a bit frustrating and grieving. It’s necessary to have someone in your corner to encourage you and to be your “practice police.” But what if you don’t have that person? Then begin with reading something you enjoy at a time that makes sense for you. For example, people often read the paper over breakfast. Begin with that; read one article from beginning to end, no skipping around, each morning at breakfast. Another way I’ve recently discovered is through using the iPad and being on Twitter. Many people link to articles that catch their interest. iPad apps like Twitterrific make it easy to press the link and have the page fill the screen instantly, ready to read. Or Flipboard is a magazine-style way to read the links your Facebook friends post, making it faster and easier to read. Faster and easier, clicking links posted by others, are ways that cue you to read.

When trying to decide on a book or more difficult reading material, ask yourself these questions in order to decide what to read and when: is it new (harder than material you’ve already read); how much energy do you have (if low, don’t read); is it relevant; is it long or short; is it complex; can you just read it or must you retain and learn from it; what format is it in; is it interesting. Always set a timer, ensure a quiet environment, use the appropriate AVE session beforehand, use the compensating strategies that work for you, have a glass of water at hand, and do not repeat a reading session that day. You want to set yourself up for success so that you are likely to keep reading.

And that’s what I got so far. I’d love to hear what’s worked for you!

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I purchased the DAVID Paradise XL. DAVID stands for Digital Audio Visual Integration Device. It’s a black box that has over 35 preprogrammed sessions on it as well as the ability to create your own. It came with yellow, violet, and green coloured plastic screens that can stick to the inside via velcro to effectively change the colour of the lights.* I used the SMR (Sensory Motor Rhythm) session first; it works for 24 minutes to entrain the brain at 14 Hz beta waves. I slept for an hour and a half afterwards (sleep does seem to be my initial reaction to these electrical kind of gizmos), and woke up for the first time in over 5 years not feeling like a zombie, literally. I was astounded and very, very happy. Since then, after experimenting, I’ve settled on my favourite sessions and use those for the most part. However, as I continue to improve, some sessions have become less effective while others moreso. It’s a good idea to have a glass of water ready to drink after a session. As I mention in another post, hydration is good for the brain!

Favourite Sessions

Beta sessions are meant to be used in the morning, preferably before 2:00 pm, to get you going.

SMR, 14 Hz, Beta: SMR is relaxed, focused attention. For a small subset of the population, stimulating SMR waves induces sleep. That was me. For years I used it to help me go to sleep  or return to sleep if I awoke in the middle of the night. But suddenly, it stopped putting me to sleep. Weird. Now I respond like the normal population and use this session in the morning to help me prep for situations that involve crowds where I need to be focused – and relaxed as I don’t like the distracting, overwhelming noise of crowds. In such a situation, being relaxed and being able to pay attention to an event or a person is important.

16 Hz, Beta: This session helps people with fatigue from fibromyalgia. In the first few years, this helped with my sleep. However, even if I’m tired and achy, as opposed to just tired, and I use this one, it is no longer as effective. I assume that’s because my fibromyalgia is no longer much of a problem – the brain injury-induced problems remain the overwhelming issue.

18 Hz, Beta: 18 Hz beta waves are produced when doing cognitive tasks like problem solving without inducing rumination. This session is to help people whose fatigue is from anxiety and trauma. I like this one a lot. It energizes me, makes me feel like a happy puppy, ready to go play – or write in my case.

I have never used the sessions that entrain higher frequency beta waves because rumination occurs about 20 Hz or above. Because, like many with brain injuries, I have a problem with rumination, it’s not a good idea to inadvertently stimulate it!

Alpha sessions can be used in the morning or afternoon, but generally not a good idea to use them at night. You might be up for awhile.

10 Hz, Alpha, 14 minutes: This is like a quick coffee break sans the jitters. I don’t give up my coffee, but instead of having a second cup, I use this session, and it perks me up. This is the session to begin with when first using the AVE for entraining alpha waves. I like the brevity of this session. I sometimes get frustrated with how much time I have to spend being what I call “duct taped” together with gizmos like AVE, CES (cranial electrical stimulation), micro-TENS, etc. etc., so using this one gives me some benefit without taking time from activities I enjoy.

10 Hz, Alpha, 32 minutes: This is the normal-length alpha session. It does two things: stimulate the mind into creating, in a relaxed, happy way; and relieve pain. At some point in the session, thoughts begin to appear; imagination sparks; ideas flow. It’s quite nice. If a migraine is beginning, then this session stops the pain progressing. Research suggests that it can help with migraine; I read one study years ago that said 20 minutes of an alpha session with the visual intensity as high as one can stand it is effective against migraines. I only jack up the visual intensity for this use. It also works for neck pain – which is the cause of my migraines – and other muscular pain. Although it doesn’t get rid of it – unless I’m smart enough to use it as soon as the pain starts – it does stop it so that it doesn’t progress to the “let me die in the dark” level.

10.6 Hz, Apha, 30 minutes: In people with high IQs, alpha waves are generally cycle at higher frequencies. Because closed head injury can drop the alpha-wave frequency down several notches, this session helps to restore it (temporarily) to the pre-injury levels. I don’t like this one as much, probably because my brain is not yet ready to return to normal in this area. I use it occasionally when I’m going to tackle a harder-than-usual mental task. Its effects don’t last that long, so I use it not too long before I do the task.

The mixed sessions are interesting as they entrain the left side of the brain differently from the right side in order to target specific problems.

SMR Left (right side of brain)/18 Hz Right (left side of brain)/10 Hz both, ADD: I used a milder form of this mixed session, called “Brain Brightener” for years before graduating to this one. They both do the same thing, except the Brain Brightener is gentler. And when you have a closed head injury, you want to set yourself up for success and you want to have things be gentle on you in the beginning so you’re more likely to use it again. The ADD session, as its name implies, is to treat Attention Deficit Disorder. It stimulates the mind through rapid transitions between Beta and Alpha frequencies; it improves mental function and memory. When I find my restlessness, my distractibility is increasing, I use this session.

0.5-1 Hz, Sub-Delta: This is a passive session with no entrainment. It calms the hypothalamus. I find it’s most effective when used just before going to sleep. I prefer that time because it induces sleep when you need to sleep, and it more effectively reduces my body temperature at that hour than if I use it in the middle of the afternoon. Also, if I use it in the middle of the afternoon, it makes me very thirsty, and I absolutely need water close at hand to drink immediately afterwards.

I tried to use the Schumann Resonance (the earth’s electromagnetic resonance) alpha-theta sessions of 7.8 Hz, but they engendered unpleasant emotions in me. That may be because it was activating my emotional centre, which was off for almost 6 years and is still dampened. Activating it means a flood of emotions. Not nice. Also, closed head injury increases the production of theta and delta waves – my EEG assessments showed several areas of my brain busy snoozing in theta and delta land instead of working. My brain biofeedback treatment sessions worked to suppress those waves while increasing alpha and beta waves. I don’t wish to then increase them again through AVE. That’s why I mostly avoid the Theta and Delta sessions, and only use the sub-Delta one because it’s passive.

AVE is my favourite way to help my brain function better. And it makes logical sense. The brain is an electrical organ whose cells are designed to conduct electricity and to create electricity and which uses chemicals to propagate electrical activity between cells. It’s an ingenious organ. But for too long, medical researchers have been focussing on the chemical aspects only. But when the movement of electrons is the brain’s primary way of controlling the body and your mental activities, that narrow focus ignores innovative ways to effect change. Some medical researchers are moving that way, but boy do they like the dramatic route. They are experimenting with methods like large magnets (for depression, as magnets can induce electrical activity) or deep-brain stimulation. But really, why gravitate to such invasive, risky methods with side effects when we have built into us natural methods of creating electrical activity. They’re called the eyes, ears, nose, tongue, and skin. All these take sensory inputs, convert them to electrical inputs, and send them to the brain for processing and acting on. AVE uses two of these input methods – eyes and ears – to stimulate the brain in a way that avoids the big risks associated with brain surgery and large magnets. It’s cheaper and more accessible too.

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*Mind Alive has come out with newer versions, available in black, yellow, and translucent blue. They also have a wider variety of Omniscreens available, including ones you can see through. And instead of coloured lenses, they now sell Omniscreens similar to what my psychologist used, where the lights are different colours, including red. I’m not sure I’d use the red one now as it’s been so long and I’m no longer under the care of a psychologist who understands this technology, but for someone who has a brain injury and is under the care of an expert, I’d recommend it. I recently had to replace my Omniscreen because my house help continued to wrap the cord around the lenses even though I’d told her not to. Result: screwed up cord. The visual part of this system is very delicate. So note to the wise: put the Omniscreen away where some errant cleaning lady, homemaker, or personal care worker can’t damage it! However, I have to say the new one is much nicer. The cord can now be unplugged from the glasses as well as the device so it’s less likely to be damaged. (My original one was hardwired.)

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As I have discovered over the past few years, reading is a complicated process, mediated by several parts of the brain. It begins with the eyes. Your eyes see the letters on a page. They take that visual information and convert it to an electrical pulse, sending it to the visual cortex in the brain. But the brain does more than see letters and words; it also gives meaning to those letters and words. It processes them together as sentences and paragraphs and chapters to understand a greater meaning; it keeps track of each word read so that the big picture develops in your mind; it retains that big picture and slots details into it; it comprehends concepts and descriptions within that big picture; and it learns and retains the whole of it in the long term.

When I was injured, I had a SPECT scan, which showed abnormalities in the frontal, temporal, and parietal regions. The later MRI showed nothing (not surprising because it usually doesn’t after a certain period of time. A PET scan may have but I didn’t have a spare 3 grand). Somewhere in those injured areas lay the ones responsible for reading, but it was many years before I understood which and why.

In outpatient rehab, I worked with a speech language pathologist and occupational therapist on my reading. They didn’t say to me “this” is the reason for your difficulty, “this” being the injured area(s). Instead we spoke about compensating strategies to help me remember what I was reading. To say those strategies were an abject failure is an understatement. I hated reading a light mystery like I was studying for a university exam, with highlighting, taking notes, and so on, yet ending up remembering very little anyway. It’s a strange thing to be reading in the moment, with the past words lost and the future unfathomable. I gravitated toward series I knew already, no new learning or having to rely on a memory that worked poorly. When it took me a year to read and read again a simple book with diagrams, questions, and other ways to help the reader remember and learn from the text, and at the end of that year remembered nothing, I gave up. I continued to read because I always had, but I read only the advice column and simple mystery books, taking weeks to finish one. I read nothing else unless I had to (like e-mails, which I read and reread to ensure I was replying to what they’d written not to what I thought they had written).

It was only after I had a 19-point EEG done that I was told where the problems lay and why having trouble. Why I didn’t have an EEG done before and why physicians and therapists involved in the medical model of brain injury rehab ignore EEGs is beyond me. Sleep specialists with their years of medical training use EEGs quite effectively to diagnose sleep problems — and the computer software that interprets EEGs today is remarkable in how it analyses the data and even produce 3D models similar to MRIs and to a physical model.

Having the EEG done meant we could understand the problem on a physiological level, which is after all where the damage was done, not on a behavioural level, which was not the cause or issue. Yet behavioural is how the medical model deals with cognitive issues. I’m starting to get a bit annoyed with that. Let’s deal with the cause(s) to the best of our ability first and use behavioural as an adjunct, not the other way around or ignore the former altogether.

I’m going to get a little bit technical here and will be focusing on my specific issues. I won’t be talking about the actual ability to recognize letters and words. Most rehab places have that part down pat. For those of you with iPads, download the free 3D Brain app. It’s a pretty cool app that shows the large structures of the brain with easy-to-understand explanations of the function of each area and links to research.

Before I begin, I want you dear reader to understand that the brain is the final frontier, which means we know little about it. To make things tougher, not everyone agrees on current thinking about the brain. Nothing is absolute. Knowledge of each area is not set in stone yet. And anyone who claims that it is, is being disingenuous or closed-minded or plain stupid. By the way, some of the areas I discuss are also involved in emotional regulation and the role of emotions in memory formation, which is a whole other issue for me. But this post is about reading, about how I understand it to work, and will probably be subject to change as we learn more and more.

Getting the Information

Reading begins with being able to receive sensory input, in this case seeing, perceiving, and processing the words on the page. Since this post assumes you don’t have a damaged visual cortex and can see, that’s a much as I have to say on that.

Processing, Synthesizing, Retaining the Information

The brain takes that input, processes it, and puts it into memory. The posterior cingulate gyrus is hypothesized to synthesize and integrate sensory input and long-term memory. It is an important connection between working memory processing and long-term memory formation. It has heavy connections with the posterior parietal lobe, the dorsolateral prefrontal cortex and the parahippocampal cortex.

In other words, when you read you’re processing the words, putting them into working memory, and then into long-term memory. It’s like typing letters on a computer screen, having the software record the words, then eventually clicking that Save button. If you have reduced activity in this region due to an injury, you may be able to take in the words – see them on the page, perceive that they are words – but be unable to keep them in working memory and thence put them into long-term memory. Hence, the feeling of reading in the moment, not remembering what happened before. And if you can’t remember what happened before, you’re not building up a picture in your mind and so cannot predict what will come next: something mystery book readers like to do.

The parahippocampal gyrus on the right side is involved with attention and selecting what to key into short-term memory. Being on the right side, it’s a bit more visual. This area is not well understood and is being researched intensely after they discovered that it’s involved in memory processing, it may be involved with our personalities and experience, and perhaps spatial processing. If you do not or cannot filter everything you read, then the information is going to overload your brain, and it’s likely to just stop taking it in. This is what happens to me: I see the words, but my eyes skip around the page looking for something easier to take in as the words “feel” overwhelming. That’s usually my cue to stop reading. Of course, half the time I ignore it, which is just dumb as it leads to frustration and a headache. Being able to selectively key in on what you need to know keeps the information flowing and is an efficient way to process and retain.

Broca’s Area 31 sounds a bit sci-fi’sh, but it may be involved in synthesizing and integrating incoming information. It’s usually well known for fluid speech production and a certain kind of aphasia after injury. But some research suggests that it’s also involved in visual speech perception (taking in of speech, not producing it; I wonder if this is why I need to see a person’s mouth to be able to easily understand them??) and in the processing of lexical, grammatical, and phonological aspects of language. What does this mean? Haven’t a clue other than it’s involved in language processing, which is important when reading.

Superior temporal gyrus on the left is involved in auditory processing and co-ordination with Broca’s Area 31. It connects to the limbic system (hippocampus and amygdala), the thalamus, and neocortical association areas in the prefrontal cortex. Again no clue what that means. But damage here could account for the fact that I cannot read aloud what I write. The sound of my voice interferes with comprehension. Reading aloud is important to writers because it’s how you can hear if dialogue works and your work sounds fine.

Brodmann’s Areas 23 and 24, the latter in the anterior cingulate is involved in selective attention (as well as modulation of affect — emotion). Unless you can focus on the task at hand, it’s difficult to do it. It’s difficult to read if you’re easily distracted; it’s difficult to remember and to learn if your brain can’t distinguish between important and unimportant stimuli and doesn’t know to focus only on the important stuff.

Wernicke’s Area has been traditionally viewed as being involved in spoken language. But recent research shows that it’s involved in processing language, whether spoken or signed. In my case, the experts couldn’t agree on whether it’s involved in my reading issues or not.

And then there are the Frontal Lobes, including the prefrontal cortex with its crucial role in executive function: initiation, planning, organizing, and apparently reading. The frontal lobes are a complicated piece of machinery that do all sorts of reading-related stuff.

There’s the big picture issue. Alpha waves open up your awareness. You need open awareness in reading just as much as navigating the street without bumping into a squirrel. Without the big picture, it’s hard to see and thus understand and retain the concepts in a book, or even a plotline. I don’t know which specific areas need to produce those alpha waves to see the big picture.

There’s the attention issue. The frontal lobes may be involved in paying attention (other areas are involved in attention too).  Without attention, there’s no way anything’s going in. Just ask someone with ADD. You need to be able to focus and stay focused on the words at hand in order to remember them and understand their meaning.

Thinking. When you read, you’re thinking. You’re thinking about what’s happening or about the ideas the writer is positing. You’re synthesizing the new information with old information. You’re integrating the two or tossing out some of the old or keeping only some of the new. This is all active. Takes energy.

There’s initiation deficit. If you have no initiation, you may want to read, think about reading, but the Go button is off, and so you do not read. This is why getting the iPad has increased my reading (and mental fatigue!). There are all sorts of cues – Go buttons – from people tweeting links to articles, to apps that make it easier to Flickr (which involves reading comments and descriptions on photos), to apps that make it easier to read Facebook links. When the reading material is brought to you, as opposed to you having to go get it, it’s much easier to get going and read. Other cues could be like the kind that increase people’s desire to smoke: I’m having coffee, so it must be time to read. But that kind of cue is either pre-existing or built up over time.

Lastly, it’s hard to read if all these different areas don’t talk to each other. As you may have gathered, all these areas I’ve discussed either connect directly or indirectly to each other. It’s like following a light pulse from your eyes down your optic nerve to the visual cortex at the back and then from the back of the brain, not quite in a direct line, to the front of the brain. Each part does its own thing but must talk to the other parts for reading to happen correctly.

Coherence is about how each area of the brain works independently from the others, how each area does its own thing, yet each also talks to the others to create an efficient, effective working human being. A brain whose areas all do the same thing is a slow brain that works with effort. An injured brain may become too coherent and not retain that fine balance between independence and interdependence. When it comes to reading, too much coherence may lead to areas not communicating with each other and with the back of the brain which takes in sensory input. It is inefficient and uses up way more energy.

One more thing: closed head injury results in reduced blood flow in the brain. We’re beginning to know that reduced blood flow leads to fatigue and fatigue makes doing anything harder. Think about making dinner. You may not like cooking but when you’re chipper, energetic, perky, you get right to it. But when you’re tired, dragged out, the idea of lifting a pot is anathema. You reach for that takeout menu. Similarly, fatigue, an ever-present problem after brain injury, interferes with all cognitive functions, especially complicated effort-full ones like reading.

So that’s what I’ve learnt so far about the physiological aspects of reading and which injured areas can affect it. My learning really began back in university when I studied neurophysiology as part of my psychology degree. Since my brain injury in 2000, most of the people who’ve worked with me have taken the time to explain things, and I took notes. Not very good ones until after the brain biofeedback, mind you! I heard, read, and experienced the same information over and over these past 10 years, while also learning something new each year. And Google comes in handy to find the information I remembered or had noted down in forms that I can link to. I wrote this partly to help cement into my mind all that I’ve learnt and mostly to help anyone else who’s having trouble reading since their injury and can’t understand why.

Next: Treating and Compensating for Reading Problems

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A huge problem people with brain injuries face is, IMHO, the inability to organize, initiate, and to get things done from start to finish. Even if something gets us going, the silliest small thing can stop us in our tracks. Organizing is a cognitive activity, requiring mental energy, which people with brain injuries have little of. Fatigue is a constant whine to stop.

The culprit: a damaged prefrontal cortex. That area is responsible for turning chaos into organization, for initiating and motivating, for making choices, in short, executive functioning.

It sucks not to have it. It sucks less to have a partially healed one, but still sucks.

Many of us rely on handhelds and computers as our second brain, for the executive function and memory. And although the best help is human help, especially for large projects — like writing a novel! — the more computers can do for us, the more independent we can be because human help is often not available or in short supply.

After I switched from my Palm Tungsten e to the Apple iPod Touch, I bought Pocket Informant (PI), the closest calendaring app to Datebk for the Palm, the very best calendar and task app I’ve used. PI is the only app that has both event and task scheduling. Other apps are either events or tasks, not very useful in the real world of appointments and phone calls, coffee hookups and washing dishes. PI is easy to use immediately; it organizes tasks using the Franklin Covey, Toodledo, or Getting Things Done (GTD) method; and it has a robust and active help forum where the developers answer questions and respond to feedback quickly. It’s important to have quick access to help since most of these apps don’t come with extensive manuals and, if you’re like me, they’re too difficult to comprehend anyway.

PI syncs wirelessly with Google Calendar, Outlook, iCal, and Toodledo. They are working on other sync arrangements, including the native Apple calendar in the next update. Syncing ensures your schedule is backed up elsewhere and allows you to check your schedule no matter where you are or if you’ve forgotten your handheld (assuming you’re close to a computer).

PI recently released its app for the iPad. And wow, has it ever made a difference to me being able to see and perceive my schedule.

I’d been working with a therapist on creating a task list of everything I had to do, similar to what David Allen of Getting Things Done fame advocates. The problem was that it made no sense to me. Visually the list was a jumble — even though we’d tagged all the tasks, put due dates on only the immediate ones, and made just the ones for the coming week “Next Action” items. Every time I saw my list of projects and tasks, it overwhelmed and paralyzed me. I couldn’t make a decision when it came time to setting priorities. Sure, I knew what the steps were to choose and schedule a task, but doing them…not happening. My prefrontal cortext balked. I thought it was all about the visuals. But when I saw my schedule on PI for the iPad, I immediately saw that the task and projects lists were too long. There was too much content. Plus all this content, all this information was in text, which is hard for me to distinguish anyway. I knew immediately what I had to do.

I’d read about Corkulous on Inkygirl’s iPad blog, and I downloaded it. Corkulous creates corkboards on which you can put photos, sticky notes, labels, task lists, and nested corkboards.

I took all the tasks that I didn’t have to do in the foreseeable future out of PI and put them into Corkulous. For each task, I found a photo that represented that task. For example, I want to work on my CafePress items regularly, so I found a photo of one of my CafePress items and put that at the top of the corkboard I’d labelled “Goals Pending.” Underneath, I put a small label to explain it. I repeated that for all the tasks but ones I couldn’t think of a photo to represent it.

What a relief!

The task list in PI was suddenly manageable. I could see my current priorities easily — and only my current priorities. Decision making became easier. The options seem fewer even though they are really the same as before but are no longer cluttered up with all my other inbox tasks.

I then created a Current Goals corkboard. Again I used photos to represent each of my current goals: script, Lifeliner marketing, She, new novel. Then I made it my iPad’s Lock Screen. Corkulous allows you to quickly take a snapshot of your Corkboard; under Wallpaper in the iPad’s settings, you choose that snapshot under Saved Photos for your Lock Screen. That way you can see what your priorities are every time you turn on your iPad, but aren’t dunned over the head with it as you would be if you made it your Home Screen. You can also quickly change it every time you update the Current Goals corkboard. Once I complete a current goal, I can then move up a pending goal into the current goal corkboard, or at least that’s the idea. Deciding which pending goal to move up, well, that will be tough.

I look at Corkulous for a quick visual reminder of my priorities before scheduling my week in PI. Scheduling is still not that easy — choosing which priority to focus on, being able to break it into actionable steps, figuring out how much time it will take and when I’ll be most mentally alert to spend that time — all that I still need help with. Sure, I can muddle through on my own, and these apps make it much more doable, but over the long term chaos slowly takes over my mind and without that short conversation, that comment that lights up my brain to see the solution, I go from being organized to reactive and less functional. And so I’m still looking for that computer replacement for decision making and initiation (or a way to use audiovisual entrainment to get it to work better).

One more tip: Most task and scheduling apps use the Getting Things Done method. They aren’t very good at replicating the Franklin Covey method. I finally bought the book by Allen. Understanding how he does things helps in understanding the task options in PI. And using colours to distinguish between kinds of tasks and events, e.g., pink for personal, blue for medical, helps you to visually understand your schedule better.

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Bollocks.

There is no two-year window, no two-year-only optimum time for recovery.

There has never been a deadline on healing after a brain injury.

The doctors are wrong.

People who buy into this mantra are wrong.

This is limited and limiting thinking.

I say this for four reasons:

1. Way back in the dark ages of brain research, when I was studying neurophysiology at the University of Toronto (the irony!), when scientific knowledge knew only four or five neurotransmitters, researchers were perfectly aware that there is a cell whose function is to repair damaged neurons. And like any repair tool, this tool continues repairs until they’re done. They don’t stop because the repair cell says, “Oh look, it’s two years. Time for a beer.”
2. It is well documented, although considered rare, that people wake up from comas after ten years or twenty. Now they could hardly have woken up unless there had been healing going on well past the two-year mark, otherwise why did they not wake up after two years? What were their brains doing for the other 18 if the first two were the optimum time to recover?
3. Although doctors seem to be oblivious to the fact, psychologists well know that there are methods to heal and treat a brain injury — and that these methods are not constrained by time. When I began sessions with a psychologist about three months after my injury, he began using what he called neurofeedback, but which I now know as audiovisual entrainment (scientists do like to change the names of procedures). He told me that he’d had success with it in improving brain function even in clients who came to him up to 5½ years after the initial injury. In fact, it was about 5½ years post-injury when I began brain biofeedback, a method to treat not just compensate for my brain injury. It accelerated my brain’s healing (almost too fast) and put me into an optimal state towards real recovery, the kind that gives you the opportunity to rejoin society, not stay on its margins forever.
4. Back to spontaneous healing. Although the brain may heal the slowest of all the parts of the body, like the turtle, it does get there. We don’t know which point in time was the most optimal for ultimate healing even if it’s easier to see healing at certain points than others. I’ve heard stories of those having a stroke and not knowing their family members suddenly call them by name ten years after the injury. I’ve read about survivors who spontaneously regained their old reading skills at three years. I personally started regaining my curiosity at six years. OK, that was because of the brain biofeedback, but from that experience, I believe it’s possible to accelerate spontaneous healing through treatment modalities like brain biofeedback and to temporarily wake up specific aspects of brain function, like focus or imagination, through audiovisual entrainment, and perhaps improve it permanently with repeated sessions over a long period of time. Almost three years after the end of brain biofeedback and more than ten years post-injury, I continue to experience spontaneous healing, healing so dramatic that, though not noticeable on the outside, not physically changing but physically challenging with dizziness, nausea, and fatigue, feels like part of my brain has gone way ahead and the rest of me is panting to catch up. Healing can be a bitch.

The doctors are wrong. And they’re harming countless people by repeating this mantra to them, that gives caregivers and therapists permission to forever sideline many with brain injuries while seeming to help them as much as possible. It’s not that they’re not compassionate, that they don’t care, but that they have very narrow ideas of recovery, that they don’t expect dramatic improvement after two years and don’t seek ways to effect that. They don’t work to regain the full potential of the individual as the mantra has limited everyone’s idea of that potential.

The next time they or someone else parrots the two-year mantra, tell them to stop right there. And to adopt a new mantra: the rest of a person’s life, any time in that life, is the optimum time to recover and rejoin society. OK, a bit wordy. If you have any ideas for a short, catchy one that says the same, please share it below!

Technorati Tags: brain injury, recovery, brain injury treatment, traumatic brain injury, closed head injury, acquired brain injury, health

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First Use

The first thing I wanted to do with my new toy was to see my eBook Lifeliner without purchasing it through iBookstore. To do so, since I didn’t know how to create the Books folder in iTunes, I first downloaded a free book (Aesop’s Fables, my favourite as a kid) through the iBooks app on my iPad, then I synced it so that “Books” showed up under Library in iTunes on my computer. There was one odd thing: when I clicked on Sync Books in iTunes on the computer, it popped up a message warning me it would delete all music, TV shows, and movies off my iPad. Since I had none, I didn’t care. But why would they be deleted? On subsequent syncs, that message didn’t pop up.

Once I verified I had the ePub version of Lifeliner on my computer, I clicked File/Add File to Library in iTunes. I found the ePub file and clicked on it. iTunes brought it into the Books folder. I clicked on the iPad under Devices, clicked the Books tab, and then the Sync button at the bottom. And there it was on my bookshelf, next to Aesop’s Fables! It looks OK, and I was pleased to see that the ending image shows up properly in full colour and sized appropriately (the only eReader in which it does). The clickable links and Table of Contents also work! Yay!! There are two ways to use the ToC: press on the links while reading the book or press on the ToC icon at the top of the page — the icon actually renders the ToC beautifully.

Reading

Many have said it’s easy to read books on the iPad. But like trying to use your brain after you’ve injured it, you really only can tell what’s easier, physically, to read when your eyes are tired and/or hurting. Hands down, the easiest to read is paper, non-glossy paper like in paperbacks or newspapers, closely followed by glossy magazine-style paper. The second-easiest is eInk. Both paper and eInk send no light waves your way. No light waves means no photons bombarding your eyes while you’re trying to use them in close up work. That’s my theory anyway. The hardest on your eyes, physically, is the iPad and your computer screen (and some screens are really awful). And unlike some claims, it isn’t easy reading the iPad in the sunlight. There’s a huge amount of reflection; you have to hold it at a certain angle, which can become tiring, to minimize the reflection; and you have to turn up the brightness to full, not a which is rather draining on the battery. eInk, on the other hand, is a treat to read in the sunlight. However, in terms of clarity, the text on the iPad is beautiful and comes in several fonts of your choice. You can also choose sepia-toned paper for less contrasty reading.

The only problem with eInk right now is the contrast. It needs to become as readable as paper in low light, and it needs to have higher contrast, like paper. Even so, if it’s a competition between my iPad and Sony Reader in most good light situations, I’ll choose the Reader for straight text. I’ll choose the iPad for multimedia type publications like magazines and newspapers and multimedia books — whenever ones I like hit the market. I’ll also choose the iPad for night-time reading but not bedtime reading as I can see how the bright screen can interfere with falling asleep. The Sony Reader doesn’t. In fact, the Sony allows me to read more challenging books than Agatha Christies, by showing me unembellished pages of text and as little text as I want to see, which minimizes visual distraction, a problem for those with brain injuries. And so I find I fall asleep faster from the brain use. The Stanza app is like the Reader in showing just text. The iBooks app is neat in how it looks like a book but is more distracting visually. For those with brain injuries, I’d recommend either an eInk eReader like the Sony or the Stanza app.

Editing

I wrote very differently before my brain injury than I do now. Before, I hand wrote the first draft, edited it with a pen ( with lots of great big Xs driven through paragraphs), and then typed it in to the computer. I always printed off a draft and edited it with a red pen, green for final proof-reading. But the 2000 car crash weakened my dominant arm (again, for the second time. Sigh, really hate stupid drivers, always screwing up my arm because of the seatbelt grabbing me), and it caused big changes in my brain, including how I write. Now I type everything in: original and edits. I never print and mark up by hand with a pen. Oh sure, I tried. It didn’t work.

When I got my Reader and learnt I could annotate a PDF file using the stylus — a tech version of marking up with pen — I thought wow, I can go back to the way I was. It was pretty easy to write notes on the Reader. And handling the stylus was familiar because of all the years I had a Palm. But, you know, it just isn’t me, the me I am now.

I came to that realisation when I checked out iAnnotate for the iPad, which I thought might be easier than the Reader. It has colour, allows for highlighting, underlining, typing in notes. But to me it sounded more and more like way too much work. So much faster and easier to pull up my file on my computer and type away. I will experiment with using a word processor substitute on the iPad for when I want to write away from my computer. The iPad’s superior battery power means being able to use it for as long as I can in a cafe without worrying about it dying and my work disappearing (yes, I do have AutoSave on everything).

I’m not sure if an app on the iPad can help me with my problem with forgetting what I’ve written. I have to outline because of that and update it as I write to ensure I know where I am in the book, both when writing it and editing later.

As for the physical act of typing on the iPad, I took to it like a duck to water. Even so, I find the screen hard on my fingers. That’s why I bought the wireless keyboard, a light easy-to-use accessory. The iPad seamlessly recognizes it, and automatically doesn’t load up the onscreen keyboard once the wireless one is connected. It does take some getting used to touching the screen instead of using a mouse to navigate, but that’s just a habit to form. And if you get the Apple case, you can stand the iPad up on its end so it speak so that it’s like a computer screen, which means less neck strain as you don’t have to look down but more straight ahead while typing.

Blogging

I have two blogs I update weekly. I use blogging software on my computer for the most part and must admit Windows Live Writer is superior (trying not to gag on admitting Microsoft can do something well). I considered blogging on my iPod Touch, but the screen is just too small. I used the WordPress app on my iPad for my first iPad post. But it was really, really, really basic. I couldn’t even italicize. The best it’s good for is to type up a draft, which I’d finish on the computer.

But then I was reading reviews on iPad blogging software and one savvy person pointed out that you could blog in the blogging client itself because Safari on the iPad shows websites nicely. Aside from it being free, it has the added advantage of looking the same whether I’m on my iPad or computer when drafting and polishing off a post. But there’s a problem — you can’t scroll inside a frame, which can make for some difficult moments when editing a longer-than-the-frame size post. Too much work. It’s also easy to inadvertently delete an entire post by grazing the iPad screen. In fact, it’s taking me awhile to get used to keeping my hand off the screen and only touching it with my finger, as the iPad is so sensitive to touch. So after further experimenting, I am pretty much back to writing a post on my laptop, but that might change if I find a good blogging app.

Weather

For weather junkies like Canadians, the weather apps are one of the neatest features of the iPad. Checking the weather from my laptop is OK. But after I got my iPod Touch and downloaded the Yahoo! weather app, I found that much easier and faster. Though a bit off the mark, it was clear and concise; it showed immediately the info I was most interested in.

After checking out reviews and screenshots of weather apps, I settled on AccuWeather for the iPad. It took me a few minutes to figure out how to change it to metric — click that thingy icon on the lower right side to pop up icons for different options; flick the icons to the left until you get to settings; switch to metric.

AccuWeather has a busier look than my iPod Touch app. It’s hard to see at first what day I’m looking at. After the most recent update, it shows the current temp automatically in portrait mode and through a button in landscape mode. The neat thing about it is that it has all sorts of extra info like wind speed and direction. And if you press on that thingy icon on the lower right, then flick to lifestyle, you’ll find all sorts of useful goodies — once your eyes (or maybe it’s the brain) sorts out the details in the immense list of things like dog walking, migraine risk, jogging forecast, mosquito risk, arthritis risk, asthma risk, hair frizz risk (hey, don’t laugh, it’s necessary to know this) and so on and so on.

For a quick check of the weather, I still use my iPod. For a more detailed check, including risks, I use my iPad.

Newspapers and Magazines

I don’t subscribe to the Saturday edition of The Toronto Star because, for whatever reason, the delivery person will not assemble it.  I got fed up trying to find the main paper and other favourite sections in the pile that was left on my doorstep. (As a Star carrier when a teen, I would’ve gotten heck if I hadn’t assembled the paper. Clearly, standards for adult carriers are way lower.) I would occasionally read The Saturday Star (or Sunday) on my iPod Touch on Safari, using The Star’s mobile website. Like any mobile website, the text was clear, easy to read, but the number of articles was limited. I missed reading Rosie’s column. So to find I can read the full website on the iPad — nice! I can read my favourite columnists and see photos clearly. I just gotta be careful not to get breakfast crumbs on my iPad.

One of the much-ballyhooed features of the iPad was interactive magazines. Well, there aren’t a whole heck of a lot of them. (Oprah has announced O Magazine will launch an interactive version later.) And the interactivity of the four featured in Zinio — a magazine app — was nice but minimal. There’s a Text button that lets you read just the text, distraction free. Again, a good feature for those of us who have trouble reading magazines because of the distracting ads and photos and bad fonts and layout (hear me, Maclean’s?). One magazine had a slide show button that popped up photos in full screen, but it was a bit slow. Blue-surrounded text are links to other pages for more information, also a nice feature. And that was it for interactivity.

I would’ve liked to have seen small text on large photos appear in a pop-up box over the photo with a press of the finger to make it readable while still being able to see the photo. Videos of fashion photo shoots would’ve been nice. Videos of news, like The Toronto Star sometimes has on its website, would’ve been nice. Animated illustrations would’ve been nice.

For now, I’ll stick to the Maclean’s mobile app on my iPod Touch and occasionally check out featured interactive magazines until the publishers get their act together.

Social Media

I absolutely can’t stand the Facebook website. They’ve changed it so often, I find it confusing and have given up on trying to keep up. I almost exclusively use the Facebook app for the iPod Touch. It’s concise, clear, if finicky sometimes. But I can’t keep up with my groups through it (or at least I don’t know how if you can), which is why my group participation has fallen right off. For FB status updates, I use TweetDeck on my computer. The iPod Touch app and TweetDeck for the desktop will remain my way of interacting with FB because, believe it or not, there is no FB app for the iPad. And resizing the iPod Touch app on the iPad is a bit clunky.

Echofon on the iPod Touch is a super little free app (except for the odd crash) for Twitter. I use it to check Twitter, my total addiction, when my computer’s not on, or even when it is, the chief reason being that I can scroll through lots of tweets quickly when I want to catch up. Both Twitter’s website and TweetDeck are inefficient on that score. For status updates on FB and Twitter at the same time, TweetDeck for the desktop is the way to go. TweetDeck has an app for the iPad. I like its cute little notepaper look when you enter a status update — but it only updates Twitter and is more limited in options than the desktop version. However, after experiencing several problems with TweetDeck not updating tweets or dropping tweets, I started using the Twitterrific app for the iPad. It’s opening bird tweets when it brings tweets up to date can be a bit annoying — you must be able to turn it off — but it doesn’t have the problems as TweetDeck, shows the tweets in larger size, and is easier to read any of your lists or see your mentions or direct messages by simply pressing the appropriate link.

I’m still a newbie with LinkedIn, and I use its own website on my computer exclusively. Because Safari on the iPad has so much more real estate than on the iPod Touch, I may log in through the iPad as well.

Other

One of the big things Steve Jobs was excited about was watching videos on the iPad. Well, as I mentioned in a previous post, it was not so hot. Videos that keep stopping or stall altogether does not make for a good viewing experience. Other people have noted that the 4:3 ratio is a bit old school, but if the iPad showed 16:9 in full screen sans upper and lower black bars, the size of it would be a bit awkward. That part doesn’t bother me, it’s being unable to watch a video seamlessly that does. Since the recent update, video playback is better, but still not perfect.

One good video app is by the NFB. The NFB (National Film Board of Canada) library is extensive, and its app for the iPad is much better than for the iPod Touch because of the bigger real estate. However, for me, the Watch Later feature doesn’t work. But I enjoy watching a short film when I need a break.

Multimedia books is the other big promise of the iPad. That has yet to be delivered, but with the recent update of iBooks to allow for reading eBooks with audio and video and with Penguin now releasing multimedia books as apps, that will soon come to fruition, and for writers like me, it opens up exciting possibilities. Next: being able to play your favourite books as video games.

WiFi was spotty until Apple finally, at last got around to fixing it with its recent update. It’s more reliable now — so far. As for WiFi vs 3G, I don’t need 3G. In Canada, cell companies charge a fortune for data usage or even just yakking. And with the proliferation of WiFi in cafes around Toronto and with it now being free in Starbucks, really who needs 3G, except on the bus or subway? And on there, I’d rather listen to the music on my iPod  Touch.

Because Apple is being a controlling pain, Pocket Informant for the iPad has not yet been released. They rejected it once for one line of code — one line! — and now they’re taking longer to OK the fix. Over a week now. Sigh. However, I’m hoping that this app will help me better manage my schedule. Organizing, initiation, creating schedules are all challenges for those with brain injury and usually require human help. And so a good app that can replace human help for the most part would be a godsend. Although human help is the preferred way, for many of us, it’s not going to happen. That’s where technology comes in. And that was one of my hopes for the iPad. We shall see.

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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.

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BIST promises great entertainment, featuring a Battle of the Bands and a “Cerebral Circus” (with an exciting team of Circus Performers) all  M.C.’d by Chris Brown.

Come support the survivors who will display their own artwork and talents. Come hear their stories and meet some fantastic people. Come help raise awareness about the effects of brain injury.

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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.

Technorati Tags: brain injury, rehab, scheduling,

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