Category: Brain Health

Writings on brain injuries, remedies, and interesting tidbits, from the perspective of one who suffered a closed head injury and didn’t lose consciousness. Mild brain injuries are injuries too.

Brain Health

Neurodoc Chronicles: Reading Rehab and Unheard Brain Injury Grief

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I emailed my neurodoc a long time ago a tweet about what reading means to me. He’d repeatedly said my emails were important; he understood they were my way of communicating what I needed to talk about during our sessions. He printed, signed, filed it. And he wonders why he isn’t succeeding with me.


As far as my neurodoc seems concerned, drugs and the DSM are the only answers. Using newer communication methods is, well, he’s not going to do it. Learning about 21st-century discoveries of the brain and brain injury aren’t actually to be acted upon. Working in a Toronto teaching hospital, one can’t be too forward thinking, y’know. After all his ABI expert colleague didn’t want to burden his brain with 20+-year-old knowledge of thermoregulation. Better to tell the patient to get on with their life than help them. But I digress.

Let me help my neurodoc figure out what to do.

He could’ve printed out that poster. At our session immediately following me sending that email, he could’ve shown me the poster and read it out to me then asked: “Tell me how you feel or what you’re thinking as I read that out to you?” I probably would’ve bumbled around or resented being asked how I feel since half the time back then I had no clue. So then he could’ve brought up each pictogram, maybe mused about what he thought, and drawn me into a discussion. That at least would’ve started my thinking. It would’ve brought up memories. And memories would’ve dragged up emotions and the grief — over time. Doing that only for one session would’ve stopped the process of my broken brain remembering, reconnecting memories to emotions, processing the grief. Sticking to that topic over the next few sessions would’ve continued that process. But, y’know, email.

My futile attempt at communicating some deep, hidden-to-my-conscious mind emotion I could barely talk about all began with an email. And since the Ontario government won’t pay for emails and Canadian physicians think emails are the devil’s work or way too innovative or something like that, my grief over losing my reading went unheard. This was one of many attempts I made to get reading rehab going, to have my grief over losing the core of my identity being heard. Telling him that being a reader who inhaled books like opium — well, that went unheard, ignored, dismissed, shut down, year in and year out while I dragged him like a dead weight to help me rehab my reading, one agonizing step at a time, with rising hope as I glacially made progress only for him to “forget” the rehab, forcing me to remind, nag, beg to resume again. I’ve put my neurodoc on hiatus. The emotional cost of reading rehab is no longer worth it.

Brain Health

Brain Injury Grief: The Experts Begin to Recognize and Define this Profound Loss

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The last time I tried to find some info on grief and brain injury, I found nothing helpful. This past week, I half heartedly looked again. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the US and UK validated my belief that brain injury grief is a different and much more difficult beast than other kinds of grief.

Janelle Breese Biagioni wrote on Brainline: “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is….”

I’m not sure society is recognizing it. After all when most health care professionals don’t and I see person after person having to subsume their grief or being labelled depressed, you know social work and psychiatric care hasn’t evolved in this area yet.

Biagioni continues: “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”

I so relate to this list up to sadness. And brain injury does complicate it because it causes confusion, disorganization all on its own. PTSD also overlaps many of those listed states. How does one tease out the cause for each? How does one address multiple causes for one state and know which order to treat the causes or if best done simultaneously?

She continued: “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.”

I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc. And then also develop rituals when some of them return in part, distorted, not the same or maybe fully suddenly years and years later. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps you’ve come to like some radical new parts of you, like I liked not being so self-controlled to the nth degree. It was so freeing.

Dr Rudi Coetzer on Headway U.K. wrote with great insight: “brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition…

“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.

“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”

Brain Health

Let Me Eat Cake

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Slice of carrot cake

There are days when the only remedy is a slice of cake . . . maybe a whole cake. Well, OK, even in my lowest moments, I can’t eat that much!

It’s March Break when students get a week or two off from the hard mental work of school. It’s predictable and reliable, that time off. Once you hit adulthood and full-time work (contract, part-times pieced together, or old-fashioned kind), vacations need to be thought out, booked, dates negotiated with the boss and/or co-workers . . . unless you’re a health care professional, especially physician. Then no juggling, just decide, “I’m going to this conference, time to tack on a vacation.” And tell staff and patients or clients.

Or not.

I don’t know why it’s so difficult for my neurodoc to share this information weeks ahead instead of days ahead. Yeah, people with brain injury need notice, need enough time to absorb there will be a change in routine, enough time and reminders to remember to amend one’s schedule, enough time to be okay with the change. But the way I was raised, one just did these things: give people notice because it’s the polite and considerate thing to do. It’s socially mature.

But over the years, I learnt his out-of-town routine. And fed up this year with the way men manipulate women into nagging and begging for information to be shared, I just assumed it was the usual routine and rolled with it in my mind. Ha!

So I’m having cake and wondering when I get to take a vacation from my brain injury.

Brain Health

Happy Christmas to All the Hurting

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Happy Christmas AmaryllisIt’s Christmas Day, the snow lays on the ground glistening and white. Sparkly icy flakes blow in crowds off roofs as the wind gusts into the face of walkers hurrying to get their Starbucks or Timmies. Cars hiss on the snow-wet roads, waiting alongside each other at red lights, impatient to get to Christmas breakfast or lunch or dinner, some enjoying the quicker commute others the waiting at the lights, delaying the family roar for a few more seconds.

Church walls block out the city noise. Candle flames vie with stained-glass sunlight as imperfect voices sing carols and greet each other joyfully before parting to their separate feasts. Or barren homes.

Life chatters, joy laughs, pots clang, children screech, grandparents help little hands rip paper, parents gulp down drinks, and the injured brain hides in the bathroom, driven there by conversations swirling around in an unintelligible cacophony of piercing pains. It’s either that, pleasing the family with the presence of the body without joy, the brain’s needs ignored, or sipping eggnog alone in the blessed quiet of one’s own home with no one reaching in.

If it’s one thing I’ve learned — again — from social isolation, part II, it’s that when you can’t get out, people in real life won’t reach in. A token email, a couple of messages, an offer to answer your call if you need anything without an offer to come over and bring coffee or health care, and then silence . . . until you can once more get out to where they are.

Christmas is no different.

Except that God, that Jesus, is always with you.

You can rage, cry, sniffle, marvel over a blue blue sky, take quiet pleasure in watching cardinals glare-hop outside your window, sink into a Netflix movie, and Jesus is always there with you to share in every emotion or lack. People say God keeps his promises. I don’t know. But one thing Jesus does not do that every human does: abandon the sufferer.

Pain drives people away. Pain and a broken brain invites human judgement and criticism. Pain and injury imprison you. But excluding, exquisitely painful suffering draws Jesus right in there behind the bars with you. Happy Christmas.

Brain Biofeedback

The Presbyopic Lens of the DSM Mutes this Patient with Brain Injury

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Love BotThe main character in my new novel has no voice. She’s not me, yet, too, I am muted, most recently, in the relationship with my neurodoc. It’s come to an impasse. He is clinging on with rigid ferocity to the DSM and, though he’s interested in the new ideas of neuroplasticity, he continues to adhere to the familiar-to-him chemical model of the brain, while I demand that he sees my injury as an injury, meaning my issues come out of physiological damage and as the neurons heal, what he calls moods and traits will and do suddenly disappear or flip, something the DSM and chemical models don’t account for.

He’s not alone.

Psychiatry has devolved into prescribing chemicals. Take this and see me in six weeks. If one chemical formula doesn’t work, try another or add another. In the brittle brains of medical specialists, the brain has become a chemical bath that can be manipulated by ingesting or injecting the right solid or liquid chemistry. Forward thinkers aka health policy experts and bureaucratic innovators further maneuvere psychiatrists out of that old fussy model of talking and into dispensing increasingly sophisticated variations of the same type of chemicals. Community-minded forward thinkers look to generics as being exactly the same as brand names: cures for cheaper, thus more responsible to the community, except psychiatric medicines don’t cure. They just mask and symptom manage.

Accordingly, brain injury medical specialists and mental health forward thinkers have evolved treatment beyond the intimate therapeutic alliance between physician and patient to infrequent expert consults and time-limited overview, never mind that a therapeutic alliance is the best buttress against “noncompliance.” When you’re heard and you feel cared for and you’re connected to your physician, especially your psychiatrist, you’re more likely to have your concerns heard, to be given therapy and medicine that’s better suited to your needs, and thus to comply.

But in the forward thinking brittleness of evidence-based modern psychiatry, relationships are obsolete. (That reflects our society; and we wonder why North America is in turmoil.) A relationship that respects and hears the patient, that values their insight and uses it to diagnose and treat, that works with non-medical health professionals, seems to be an anomaly. Add in the lifelong demands of brain injury that’s not static over time, where communication is challenging yet the only type acceptable by the brittle progressive psychiatrists is verbal, and you have an impasse when a patient like me objects to being unheard, devalued, and sexist and culturally stereotyped through the presbyopic lens of the DSM.

If I’d had oodles of money, back in 2009, I would have sought out a psychologist familiar with brain injury. I had been told back in 2001 — and discovered for myself — that you really need a mental health professional who knows and understands brain injury in order to receive good, effective, and understanding therapy to manage the injury and its social, psychological, and economic consequences.

I would now add: needs to be someone who is willing to learn and adopt the neuroplastic model of the brain, to learn how brain injury affects women worse than men, and how gender inequality affects their social and economic lives as well as taking into account cultural differences.

Progressive men who feel proud of how they empower women and grant them equality don’t react too well to women who’ve known all their lives that they’re equal under God and don’t need to be granted it by a man, who come in expecting to have a say in their diagnosis and therapy, even when unable to communicate in the traditional way.

Unfortunately I didn’t have money flowing out of my coffers to afford a psychologist. In Ontario’s version of Canadian universal health care, the government funds only psychiatrists. And so that’s who I had to look for. The University of Toronto has hundreds, almost a thousand, psychiatrists affiliated with their Faculty of Medicine. Of those a handful work in neuropsychiatry, maybe a few understand brain injury, and hardly any work with people with brain injury in the way they need: weekly talk therapy using a team approach with health care professionals who actively treat the broken neurons. The psychiatrist ought to provide the emotional therapy and the others the physiological treatments. Some psychiatrists are joining their psychology colleagues in moving from the DSM and chemical bath model to the neuroplastic model of actually permanently healing broken people. Some so that they can work better as a member of a team; some so that they can actually treat their patients both emotionally and physiologically. I don’t know who would pay when a psychiatrist uses brain biofeedback, for example, as part of their therapy sessions. Our forward thinking bureaucrats and politicians probably ensure it isn’t taxpayer-paid health care. And I don’t think many or any of these psychiatrists are focusing on people with brain injury.

But I bet you no one is approaching reading rehab in the way my neurodoc and I are doing it (even though I became so exhausted emotionally from begging and begging for help that when he finally assented, I could no longer do the work on my own and I’ve become mute in asking for the fullness of what I need). So somehow, though he shot our therapeutic alliance to hell with his rigid clawed grip on the inappropriate-for-brain-injury DSM, he’s committed to going out of his way to help me with regaining my reading. I think that’s a metaphor for my post-brain injury life: every heavily fought-for improvement has come at a price.

Brain Biofeedback

Week Two Enhance Gamma and Inhibit Beta to Heal Injury

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Week two of new double protocol. First comes gamma then comes, uh, goes beta. I came in to week two with emotional stress, grief touched off by neurodoc. Because he’s got nothing better to do than sodden my fibres with emotional stress exhaustion. Anywho. The coming change of seasons will be affecting me soon too, and may already be upping my fatigue like it’s wont to do.

Last week, my heart was not as smooth during HRV as it was the previous couple of weeks. Peachy. And my heart rate was back in the triple digits. Peachier. But it came down and stayed down in the 90s. Awesome.

My EMG was below 2uV for the whole of gamma CZ training and above 2 during PZ assessment only. This is nice. The lower the EMG (muscle tension), the better the training.

I’d forgotten to send my brain trainer the changes I’d blogged on from the first week’s training of the new protocol. But I caught her up. I was so busy trying to remember all the good stuff for her, I totally forgot about the nausea that came on during my first PZ training. I remembered in a hurry the moment she clicked Record. The indicators became live, the virtual triplane sat on its island waiting to climb into the sky, and nausea slammed into me. Barf. No, no, not literally. But the strange feeling of brain not being stable in my skull as I began my first neurofeedback screen at PZ again almost made me call a halt. But I reminded myself that it faded last time. It did this time too. And quicker. Phew. My bad eye got a workout, though not as bad as the first week.

While she was setting the thresholds for training the different frequencies, I chatted a bit about emotional shit. I got a tad sarcastic. She said sarcasm is anger expressed in a positive way, with a humour spin. My heart rate agreed sarcasm was good. It dropped right after.

The second neurofeedback screen, which replaced inhibiting 16-20 Hz with inhibiting EMG, was as easy as last week and sort of made my head feel light again. But this week, there was an almighty pressure around my head especially my temples. I got bored. I’m going to try and figure out a way to sneak reading in to this second screen. The third neurofeedback screen had the same parameters as the first – inhibit 16-20 HZ, inhibit busy brain of 24-28 Hz, and enhance SMR at 12-15 Hz. She ran it for 3.5 minutes. Right at the three-minute mark, the colours on the computer display intensified. The yellow of the sailboat race screen became very very yellow. The fluorescent pink eye-popping. The digits marking out the time sharpened to incredible clarity. Last week, these changes happened right after screen one. But at least this week, it happened before training ended!

I was kaput after training, so much so, I just sat for a few minutes. No uptick in energy though my mind was less round and round hamster wheel like.

No problem with playing music this week, but nausea rose pretty bad about 1.5 hours after training. Just wanted to lie on the couch at home but still had to get through the TTC. Ugh.

Stairs were slow and careful while looking ahead as usual. But instead of feeling unsteady and having to look at my feet two steps from the bottom, I only had to look one step from the bottom and didn’t feel dangerously unsteady.

That strange head turning started infrequently right after training then happened more and more. Able to cross intersections looking both ways and ahead and crossing in real time sans having to slow down, consciously look and deliberately tell myself what I saw and whether I can go or not. Automaticity is so much easier! Head straightening began about two hours after.

About 2.5 hours after, awareness increased. I’d already been able to walk looking into the distance. Bad eye felt worked with that and nausea rose but my brain could take in that amount of information and allow me to walk steadily. Perception or awareness widened after that.

That night I slept better, but except for being ready to head out well in time and my head turning easier and more naturally, all the rest of the effects pretty much disappeared. Sigh.

After the new treatment, I also had one regression: I couldn’t seem to visually comprehend old streetcar steps, going up or down them. I didn’t even attempt entering the new streetcars. Shudder

Brain Biofeedback

New PZ Brain Biofeedback to Work on Injured Precuneus

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OMG. The brightness, the clarity, the colours popping and sharp are almost as overwhelming as right after my eye surgery. We trained a new area this past week in brain biofeedback.

I haven't yet blogged on my evoke and 19-point qEEG assessment. But the big finding was that once again my precuneus was off the chart in some frequencies. This year it was over four standard deviations above the norm in 16 Hz. This was the first full cap assessment since the eye surgery, and the difference was that the abnormality was bilateral instead of predominantly one sided.

Location, location, location, is what is important, Dr. Lynda Thompson told me, like in real estate. Location is more important than frequency in determining where to treat.

LORETA is the most efficient way to treat the precuneus, a large region of the parietal lobe. And, turns out, the ADD Centre now mostly uses LORETA to treat people with brain injury as it's a network approach, a more suitable way to treat many injured locations all at once instead of one location at a time (changing position every 40 to 60 sessions). Gets quicker results.

But I can't get to Mississauga to do the LORETA nor can I afford it. And the ADD Centre doesn't have the facilities nor enough trained personnel to do it in their Toronto office. This mightily sucks. Trying to cope with all my stressors, managing my health on my own, struggling to keep reading rehab going, plus unable to access what I need (I've known this since 2013 when I had to give up LORETA), is just too overwhelming.

Lynda said single-channel brain biofeedback can work with the precuneus too. She was trying to mollify and give me hope. All is not lost. But I had to give up my reading screen to do that because this time, I'm absolutely adamant I'm not giving up gamma training and they don't have extra space in their schedule to accommodate the additional training.

In the last week of July, for the first time in such a long time, I experienced the happy gamma effect an hour after training. Since November 2016, the gamma training has been swamped by overwork (insane CCAC deadlines to help me write the revised edition of Concussion Is Brain Injury and training my working memory to the edge with Cogmed) and the stress of my neurodoc fucking up my PTSD and grief therapy (because like all the other docs out there, he stuck like glue to old-fashioned views of the brain and brain injury and doesn't collaborate well). I'm having a harder time keeping my EMG down last few months. So in July, I began actively relaxing my jaw. It's succeeding. That plus the work dropping to saner levels, gamma training has a chance to not only keep me going but also pep me up.

I suppose I mayn't be able to access what others can, the LORETA, but I can access something most can't, the gamma, because I can keep my EMG below 2uV.

I'm tired of searching for the bright side though. I'd like the bright side to blind the dark side with light for once.

Anywho, we began to do both enhance-gamma at CZ and inhibit 16-20 Hz at PZ in one one-hour session. PZ accesses the precuneus. Training two locations in one hour is a bit of a sprint-marathon.

It's sort of like 2005 when I used to do two locations sequentially, but back then they were able to give me 1.5 hours.

Anyway, the results made me realize, we can inadvertently test my theory: training gamma first could potentiate other brainwaves and make their training easier and quicker.

Since it’s just my theory, not what the ADD Centre thinks, there's no trainer effect on the results. And I've long since realized my expectations have no effect. Things never happen the way I expect, like this past week.

Gamma training went as usual. Keep deep breathing rhythmic, relax jaw, focus on the visual feedback, look for the letting go feel and when get it, try to stay in that zone for as many seconds as possible.

My brain trainer put both CZ and PZ electrodes on at the start. She had to re-paste the PZ one though because my hot head melted the electropaste. That done, she explained we were inhibiting 16-20 Hz. There is such a thing as bad beta! Still, I worried this unusual training of reducing thinking brainwaves would make my vision worse. When I'd spoken to Lynda, we’d theorized that perhaps there was four standard deviations overactivity of beta because the visual cortex was still rewiring itself after eye surgery. But there apparently could be other reasons: stress (badly treated PTSD and untreated grief plus 2016 social isolation) and/or overwork. Probably both.

Since we don't really know what's going on, we're doing the PZ training as an experiment for a few weeks. And I'm to closely monitor myself and report back. So best way for me to do that is blogging like with the gamma back in 2012/2013.

First neurofeedback screen, we inhibited 16-20 Hz and EMG and enhanced SMR 12-15 Hz. I had no idea what to do to achieve that, so I focused on relaxing my jaw, breathing, and flying the triplane. Oh. My. God. Woozy! Nausea! This was like after the eye surgery but not quite so extreme. Should I stop? No, things like this settle down. My head was heavy, nausea kept on, and then my operated-on eye began feeling worked like after surgery. But no eye pain! About a couple of minutes in or so, the nausea began to lift. I also noticed both displays of equal "weight" in my vision. Much more sense of bilateral like I'd glimpsed shortly after my surgery but which hadn't stayed. Strong 180-degree vision!

But my brain so confused as to how to manage these different parameters. Head felt heavy.

I told my brain trainer. She left it up to me whether to continue to a third screen. Then as I glanced at the display, I couldn't stop exclaiming that the colours were popping.

"Did you hear me? The colours are popping!"

"Yes, I heard you," she laughed, with me.

We moved on to the second neurofeedback screen. Enhance SMR 12-15 Hz and inhibit busy brain 24-28 Hz and EMG. WOW. What a difference! My head felt so light. No nausea. But, uh, kind of too easy.

That was so weird. We change one of the neurofeedback screens during gamma training to inhibit busy brain instead of EMG, but I feel no difference in the amount of work or how my head feels. In fact, the only time my feeling of work and how my head feels change is when we move the electrode position. I've never had such a dramatic change when the electrode stays in place and we change one inhibition parameter.

Was this for real?

Gotta do a third screen to see. The third-screen parameters are the same as for the first screen but instead of a two-display triplane visual feedback, it's one-display bowling ball.

No onset of nausea this time. But that bilateral vision strong again. Colours so bloody vibrant at the end, almost blinding.

When I looked in the bathroom mirror after, I was startled because I saw the entirety of the room behind me in the mirror. I wasn't narrow focused on my face. Whoa.

My brain trainer was excited about the numbers. Unlike gamma training where we focus on what the ratio of gamma to EMG is doing, here we want to see what the absolute numbers are doing. Is 16-20 dropping while SMR going up? Is busy brain going down? And as always what's EMG doing?

Amazingly, even during the second screen when we didn't train it, 16-20 dropped with each screen. My EMG went up only when actively inhibiting 16-20. As I said: work! SMR went down during the first screen. Not good, but I brought it back up. Busy brain was pretty good. But then I've been working to inhibit that at CZ for the last many months.

My brain trainer was astounded at my brain’s quick learning curve. I said that it may prove my theory. Of course, it could just be my plastic brain. Only multi-person robust studies could prove it for sure. But research often begins with a single-subject study.

As I write this as a first draft about 1.5 hours after training, happy gamma is blossoming in me. Phew.

After some food and coffee, I began a short practice walk. Six minutes in, head began to feel challenged, dizzy. Stopped to regroup then feeling OK, set off again. Below are all the effects.

Vanishing point seeing it automatically not having to become aware consciously.

Lighter head.

More energy. Thought I can do walk! Before so damn tired decided just going home right after.

Distracted yet not because I saw things on blind side and read signs and looked long enough to take them in.

Crossed side street sans slowing though truck turning right on opposite corner, car waiting to turn right at my corner, and car waiting to turn left into street. Normally I'd just wait for them all. No hesitation, no fear!!!!!

Next street just crossed it like a normal person.

Head kept turning to blind side. Not sure why. Kept looking at stores and signs on that side. I kept walking with NO balance problems with head fully turned. Got a bit much but couldn't stop it. Weird.

Looked to good side with eyes tracking that way but bad side whole head turned.

Noises behind me not like bombs going off. In fact, barely noticed the quieter ones. The rest I turned my head and tracked with my eyes into the middle distance as if only curious not to also assess for danger (PTSD-like vigilance). Head became challenged and brain tried to keep closing bad eye. Fuck off brain. Use the visual info! It's good for you not just me!! Consuming energy quickly being so aware and looking about and navigating world differently than three hours previously but able to get Walk in anyway.

Taking in visual info is faster. I don't have to stop to take it in, process, recognize, understand, and appreciate. Even flowers. Can eye track a bird while walking with no unbalance or feeling need to stop. Huh.

No difference with stairs. No difference on TTC, still as effing disabled unfriendly as ever, except I was able to read small numbers on sign from a meter away up till I passed it while walking sans feeling umbalanced!

After a couple of hours, realized I could see as clearly looking straight ahead as looking out of the corners of my eyes towards the good side. My surgeon had said as my eyes synced, focus would become sharp looking ahead and towards the bad side. Not really. It did slowly and deliberately when looking ahead but not to bad side. But now as easily ahead as to good side; and to bad side, slightly unfocused but not to usual point of ugh-too-blurry as had been since surgery. Three hours after training, brain wants me to see iPhone straight ahead not from corners of my eyes on good side. Oh. Uh. Weird. Nice.

I'd been listening to my music while walking for many months now. But for 3.5 hours after training, no thoughts to do so, and, when realized I wasn't, brain refused to let me. This was like early months after surgery.

Maybe because of the heat outside and in my head, my visual acuity diminished to blurry after 3 hours post-training. Rest of the effects remained. I discovered normal-sighted people can read that fucking tiny-lettered TTC sign OK. Sigh. At least I could ask someone to read it for me.

About seven hours after training, I didn't get angry, impatient, or frustrated with someone who seems to persist in not hearing me. I actually repeated things I'd said several times over the months sans feeling any anger. Yet I'd been raging to myself over it that morning. After new training protocol, I felt like I could handle it. It wasn't just an absence of anger but also an uptick in competence and patience. During those six hours, I was bizarrely flipping back and forth like anger switch being turned on and off rapidly then happy gamma switch plus something stayed on longer and longer.

Next Day

I couldn't sleep the night of the new biofeedback. About 4:00am, I used my CES Sleep which I normally do when I wake up. When sleep eludes, I'll use it at 4 or 5am. Earlier I'd normally use my AVE device and its SMR For Sleep session. But I didn't want to "pollute" the brain training as I was supposed to monitor the results nor did I want to push my brain that much…although my brain trainer had said SMR OK for me to use whenever. Woke up about 5 hours later tired but feeling rather up and ready to tackle the day. Nice. Unusual. And in the is-this-for-real category…although my feet hurt as much as usual, when I got out of bed, the rest of me was much less stiff and in pain. I walked upright, not like some crouched old man, stiffly moving one leg at a time as I slowly slowly straightened up and smoothed out my movements.

In my reading practice with Mum, I was able to recall the entire previous chapter easily. It felt like it was flooding in to memory and out of my mouth. Mum noticed the change. Reading was about the same. So maybe my reading practice is encoding OK. It's retrieval that's the sticking point…

Vision acuity, colours, and head straightening remained the next day but almost all the effects were gone the second day after. Why the improvement when it should have remained after surgery? Perhaps since the same area is involved in emotions and memory, trauma had overridden the ability of the brain to process and integrate visual, auditory, and kinesthetic input.

After I returned to my current normal, I noticed I can see into the distance but not while walking. I need to focus on something stationary in the middle distance. And turning my head while walking is a careful, deliberate slow, slight turn while monitoring my balance. I hope the effect of being able to look into the distance or turn my head while walking effortlessly returns with my next biofeedback!

I suppose this is why Jesus told men to stop mistreating women. It wasn't just about being nice; it was about not harming women's cognitions such that it kept men in power. God is not patriarchal. He created humans to be equal as humans, not to be gendered humans with gender-determined power and roles.

Brain Biofeedback

Brain Injury Reassessment, Part One

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I got my brain assessment results back. There are a lot of them! I'll talk about them in the order I did them until I peter out then finish another time.

The first ones were the usual questionnaires. Can't stand them as I did a bazillion the same or like them for too many insurance experts. Nothing new. It's really me self-reporting.

The IVA and TOVA are tests of attention conducted on the computer by a computer after someone has set you up and watched you do the practice to ensure you know how to do the test. Then it's just you and the computer in a quiet room. The IVA tests both visual and auditory attention. The TOVA I had tests visual attention only. Both test results blew the ADD Centre staff away. I began my odyssey with them with poor attention and extreme hyperactivity (I'll be showing before and after results in my book Concussion Is Brain Injury since visuals really show how much and quickly I began to improve back in 2005. Makes me realize how severe and through my whole brain my injury was that I still need treatment. It being delayed years made it harder to treat too. People who start treatment quickly are way better off than me.)

Now I have excellent attention.

The tests measure various aspects of attention, too many to cover here. Attention isn't only about focus, it's also about speed, accuracy, vigilance, consistency, stamina, etc. The Response Control Quotient measures how consistent and how much stamina I have as I attend to the most boring task in the world — except for the TOVA. That's deadlier boring. When I began in 2005, my score was 93. It's gone up at each reassessment. By 2013, after gamma training, it was 122. This month, it was 134. I could feel the difference when I did the test this year. I felt more solid, and I wasn't screaming in my mind, when will this be ooooovvvvveeeerrrr. Instead, I just attended to the numbers, knowing it really would come to an end. My Total Attention Quotient, measuring speed and accuracy, was not as high, with my visual attention significantly lower than auditory as my brain is still rewiring my visual system after eye surgery. But both scores were still freaking amazing. The TOVA was at 5.86, dramatically up from last time. I'm not sure why. Since it's a test of visual attention, perhaps the eye surgery along with the gruelling Cogmed, which requires intense visual attention, upped it. I'm sure all the other things I do, like the gamma brainwave training, also influenced it.

In any case, these scores are proof that treatment works, that one can heal an injured brain. You don't need drugs to prop up attention or convince people with brain injury a diminished life of day programs, movies, and feel-good outings is all there is. You can actually fix it.

The next test was CNS — an online test the computer conducts on you that's a combination of self-reporting and testing your verbal, motor, visual, attention, discriminant skills. The part that surprised me and pleased the ADD staff was the increase in my reaction time. Brain injury slows you down so much, a snail is speedier. Things drop from your hands and hit the floor, and a few seconds later, you think, I should catch that and try to react. So for me to be speedier in IVA, TOVA, and this test is quite remarkable. It means my neurons and neural networks are speaking to each other again and in real time. I can feel the difference because I can hear, comprehend, think, and respond in real time even to unexpected questions. Fatigue still impedes me, and group attention is still not great and so I'm slow to react in those conditions. But to be able to hold a normal conversation with one or two people is huge.

The single electrode EEG shows the brainwave frequencies in relation to each other. Dr. Lynda Thompson explained it this way. Think of a car with its windows rolled up and music blasting. You can hear the thump of the bass easily through the glass but not so much the trebles of the singers. Similarly when listening to brainwaves with EEG, the lower brainwave frequencies can push through the dura and skull easier than the higher frequencies. So as you go up from the lower to the higher, the amplitudes of each frequency shrink like an angled line. Any frequency that dips off that line or rises above tells her something. It could be a good abnormality that reflects a talent or skill or it could be a bad one. She determines that by asking you about symptoms.

The first dip in me was at 6 Hz. That's hippocampal theta or central midline theta. It reflects long-term memory. The surgery did a number on my memory, which had been gradually recovering. But even before that, my long-term memories developed black holes then the holes shrank then appeared elsewhere. It could be reflecting an encoding issue. That wouldn't be true for events before my injury though. I encoded memories both naturally and deliberately. I had one hell of a memory. But since the injury, that could be true. I also think retrieval is a bit short circuited. So I told my brain trainer we have to add 2 minutes long-term recall, testing how well I remember what I read the previous weeks, before reading for 5 minutes and doing immediate recall. I'm trying to do that with my reading practice the rest of the week, but so far a bit tough as I have to have enough initiation to make it happen. Not always a given.

Anyway, the next blip was a rise at 8-9 Hz. This could be daydreaming, but in me, Lynda said it reflected creativity and brilliance. I do feel my daydreaming is returning. But for me, it was never a bad thing. It's the source of stories and ideas. And now it helps me see what I'm really feeling.

The next blip was at 23-25 Hz. Busy brain. Not good. But given my busy brain used to go from something like 20-30+ Hz, this is a huge improvement. Since it's not gone, we still have to inhibit it during brain biofeedback.

The last rise is a subtle but significant one. Gamma. It begins at 39 Hz and increases more and more up to 42 Hz, exactly the frequencies we’re training. Also, some of the gamma frequencies above that also show a rise rather than the expected amplitude drop off. Awesome!

The big 19-point qEEG test showed a ton of stuff. The big one for me is that even though my HRV SDNN remains stubbornly half of the minimum for good heart health, my heart rate has decreased steadily at each reassessment. It began at 100. It’s down to 85! I also noticed my heart rhythm is stronger (higher amplitude). My heart’s getting stronger! All those cardiologists couldn't understand how brain injury injures heart health and so couldn't help improve my cardiac health, only give me fatiguing drugs that didn't control my heart rate all that well. This biofeedback way takes forever, but I don't need drugs, and I don't need to worry if my prescription runs out or there’s a shortage or side effects or losing the battle to additional life-sucking fatigue. Also, drugs don't make you feel stronger inside, and they didn't take away my shortness of breath nor did they increase my exercise tolerance. They couldn't because they were only sticking a band-aid on my symptoms, not healing the brain injury causing the problem.

It is worrying my SDNN is still so low. But cardiac care after brain injury is such a nascent area and so few are treating it appropriately that it doesn't surprise me we haven't been able to budge that marker. There’s still so much to learn. At least people like the ADD Centre are trying to learn and tackle it. More than most cardiologists or brain injury specialists are whose bailiwick this should be. More later!

Brain Biofeedback

Brain Assessment at the ADD Centre. My Sixth…or Seventh…?

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It’s hard to believe it’s been 12 years since I had my first proper brain assessment. Since then, new ways of looking at the brain have emerged and software updated. As well as my vision. That’s what I first noticed when I walked into the ADD Centre, Mississauga office — how blue it was. No, they assured me, they hadn’t repainted since last time I was there in 2015. Same blue. A specially chosen shade too. Whoa. What used to look pale, barely blue to me was so very very blue. My improved colour perception from 2016 eye surgery has stayed!

Dr. Lynda Thompson has also changed the order of the tests because they found that people were too tired to do the computerized neuropsychological testing at the end. And she also took the elastic out of the EEG full caps. No more headaches. Bonus!

Everything else was the same though. The endless questionnaires at the start that remind me too much of the shit IMEs I was subjected to year in and year out for almost 8 years. I noticed that the questions didn’t actually get to the heart of my PTSD. Depression and anxiety scales don’t accurately measure the effects of flashbacks, triggers, startle responses, vigilance, breaking of human trust and bonds, or memory fragments that intrude and relentlessly distract when you’re innocently reading a funny story with your neurodoc for reading rehab that then needs to be processed and soothed over before you can continue. People like me who suffered a brain injury from a car crash will, I think, come with PTSD from the crash, the way insurers treat you, and the wonderful abandonment of family and friends fleeing you while hurling insults on their way out. Yeah, those legal files I recently had to fact check my book against still slamming my emotions around.

Anywho, after the questionnaires came the IVA. No more headphones but a speaker. Easier since headphones usually tried to slip off my head. But I could hear all the voices through the solid walls and door — I have acute hearing and a distractible brain. Kind of weird since my ability to focus is pretty good now. But it seems group attention and distractibility remain impaired.

My CNIB orientation and mobility trainer guided me on the long public transit trip from Toronto to Mississauga and from the bus stop to the office. I could see signage so much clearer. Wow. I kept stopping to take that in and let my brain regroup as it worked to integrate the increased information in with the old.

As part of guiding me there and at Thompson’s suggestion, he observed a lot of the testing so that he could report back to his boss at the CNIB. So many are blinded by brain injury; maybe, this sort of assessment and treatment could help them. Some of the tests though would have to allow for voice over or magnified text or adjusted for auditory only. The IVA he thought had enough contrast and size that many could see and do it.

I was a bit peeved that the Start Bar popped up as the IVA test began, distracting me and making me miss seeing the first “1” until too late to click the mouse. But I settled in after that, reminding myself regularly not to let the Start Bar or voices through the walls distract me. And not to let myself fall asleep from the utter boredom of the 15-minute IVA and even worse the 20-minute TOVA, the kill-me-now 5-minute Continuous Performance Test in the neuropsychological test that followed (which almost sent my CNIB trainer asleep — where’s that “B”?!! for her to click already, he kept thinking), and the final 10-minute timed Reaction Test at the end of the full-cap 19-point EEG evoke testing. Oh. My. God. That last one I thought I was going to fall over comatose and miss the large circle. I clicked on a small circle just to wake myself up and express my pissed-offness at the endless staring at the screen, waiting to see the large circle so I could finally click the mouse. I guess I shouldn’t have done that. Mess up my score, eh? But I figured the Start Bar had messed up my IVA, then I moved in the TOVA to wake myself up and accidentally clicked, so might as well go for a hat trick.

The big BIG difference between me at this week’s assessment and before was that I felt solid. My brain felt coherent, solid, knew what I was doing, and what I was looking at. I didn’t feel unsure if I’d missed a “1” in the IVA or if that was a bottom square in the TOVA that just flashed off or if that was a “B” or not in the CPT or if I was confusing small blue circle with large. Well, OK, the length of time between large circles was so long, I worried I wasn’t recognizing the large ones anymore. But when I saw one, I knew for sure it was large and as the test went on, that the small ones were small. (When you first practice this evoke reaction test, you can’t distinguish between large and small blue circles. But by the end, somehow, they come to look different in size.)

Another brain change: I always knew there was a pattern in the IVA. But this assessment, I actually saw it at a conscious level. It helped to make the endless 15 minutes go by quicker for the first time! I counted off each pattern change so I knew how much was left. I also anticipated when the “1” would show up in a sequence of “2”s and vice versa. The TOVA pattern is a little more random, but visible enough for me to use it to help me. The CPT and evoke tests were almost too randomized; but I picked up the pattern of endlessly flashing non-click letters or shapes before the target one appeared then back to endless non-click ones since not very likely to be more than two target ones in a row.

Pattern recognition has always been something that allowed me to still navigate the world after my brain injury. It kind of made me look like cognitive functions were working better than they were. But it’s not been at this fully aware level before during testing. Neat. Weird.

The Drs. Thompson weren’t there during my assessment. First time ever! I felt like I was experiencing the next generation. I’ve long known the ones who assessed me, and it was nice to see them more knowledgeable and having grown in experience and competence. But I missed talking to Michael about the latest research he was investigating and Lynda about my IVA and TOVA results and some of the new things they were doing. I’ll be getting my results over the phone from her when they’re all in as my CNIB guy can’t help guide me back to the Mississauga office a second time (it was a one-time only mutually beneficial trip), and I’m not yet solid and confident enough on public transit and wide intersections to do it on my own after only one practice. I’ll have to practice more in Toronto in these areas before I can.

My EMG was pretty good. Even during training now, it’s better than it has been for months. I’m wondering if that’s because I’m no longer working on the edge of my ability and in a chronic state of deep exhaustion, which I have been since I began Cogmed and then wrote and edited Concussion Is Brain Injury at the insane pace CCAC set for me with my rest period gobbled up by intense emotional stress.

Ever since the big-nausea week and big improvement that followed, my brain has continued to change. (My brain trainer noticed too: Humour is improved. Resilience is better. More positive in mood. Reading quicker. Recall improving. I didn’t notice myself that about my humour.) During the tests, I could see the screen and office in a 180-degree-view unlike all the times before because of the eye surgery. And that feeling of solidity when doing the tests, I’m also feeling now in phone calls with banks or interactions with offices I have to go to. I think it’s my treatments healing my brain of that confusion about what I’m perceiving/hearing that had wreathed my brain since the injury. I still have it, but in fewer situations and at a very very reduced level. My ability to remember what I was talking about despite continuous and sustained interruptions is also back. Nice.

For the first time since 2000, I’m not stressing about test results, counting down the days, or worrying if they’ll show the damage I’m experiencing. Maybe it’s because I’m working on my book — hoping for a September release! — or maybe it’s because my cognitions are markedly better to the point that I’m no longer in a state of desperation. The emotional shit is another issue, but as long as I can write and work on my books, I manage. For now anyway.