Brief vision update here. I don’t want to jinx it, but for the last couple of weeks, my far-distance and panoramic vision seem to have stabilized. Does this mean my brain has stopped trying to shut down the firehose of new visual information that the surgery turned on? Does this mean it has ceded the battle and is coming to terms with both eyes working together and feeding more efficient data to the visual cortex?
My depth perception is still being integrated. I’ve discovered that reciting to myself over and over “integrate” as I step down each step actually integrates my proprioception (sensory information from my feet) and perception (sensory information from my eyes) and makes stepping down and knowing where I am on the staircase much much easier. Huh. This week I got to the landing and knew it without having to stop and check my feet and feel unsteady until I did. W00t!
I’m slowly adapting to the new streetcars. Because of the TTC’s systemic bias, they have created door jambs that have yellow paint not at the outside edge but behind the black bumper. Only the accessible door has no black bumper; still, the slope down and gradual grey edge makes it difficult for my brain to perceive what is streetcar and what is pavement. And for some reason, it’s also more difficult to discern how high the step is when getting on. The old streetcars with their white-painted edges are easier to step up into, though it’s still more challenging than regular stairs . . . maybe because they’re steep??
Anyway, I bang my cane down on the surface I want to step on to, and that tells my brain where my foot goes.
The large windows and sloping floor (why oh why did the streetcar designers think sloping floors are safe on a moving vehicle‽) can induce nausea in anyone, I’ve learnt. I suggested to a friend with a perfectly healthy brain that she sit in the accessible car where the floor is flat. Nausea solved for her. But for me, it’s the large moving landscape visible outside the enormous windows. I’m assuming this moving-scenery-induced nausea/dizzy will ease over time, and I’m seated anyway, so I won’t fall.
I was starting to get quite stressed over the thought that my new vision would reverse and my brain would revert to “default.” I’m heartened that the brain biofeedback, and perhaps the increased light levels on my audiovisual entrainment device to stimulate the retina, are enforcing the new vision.
You never know when you enter a new year what the crash anniversary will be like. Sometimes you think you’ll skate through it, then the day dawns and wham: you might as well have stayed in bed.
This year, things went south early on in 2018, which to me, boded ill for today. Last night wasn’t great either. Fears picked at my nerve endings, and worries wormed through my axons. I finally fell asleep and awoke too early. I zapped my brain with what I used to call the light and sound show — audiovisual entrainment using SMR/Beta frequencies to paradoxically create calming brainwaves in my concussed brain — and turned to Twitter for welcome distraction. I stumbled on an article about a new way to objectively take the brain’s vital signs, sort of like how we measure the pulse and blood pressure to take the body’s vital signs. I emailed my brain trainer and the ADD Centre the article and asked if they’d heard of this Canadian research from out west. Their quick reply was enough to push me up and out of bed. In our world of being too busy to reply, we’ve forgotten how life-giving a quick reply, even the briefest of ones, are. Then Canada Post after subjecting me from late December to early January to the most exhausting experience of waiting for a package I’ve ever endured, suddenly turned up with my second one. I was expecting it to be shipped today, not arrive today! Whoa. The rest of the day unfolded like that, threading me from one unexpected good moment to another.
It’s the end of the day as I write this, contemplating a poster I made for myself in 2007 from the picture of the rose above. My (first) stint at brain biofeedback was ending. I was being discharged into an unknown new reality with both trepidation and faith that my hard work would return me to my dream. And now I’ve arrived at a new ending, the end of writing and publishing Concussion Is Brain Injury: Treating the Neurons and Me, the final version of my memoir; the end of believing that my PTSD can be treated; the end of focusing on my health care. Unless God answers prayer, I turn my face away from the idea I always held in front of me: that my brain injury can be healed fully, that I will avoid the heightened risk of Alzheimer’s. I’m eighteen years post-injury and am not remotely close to normal health. The poem I wrote for myself over a decade ago speaks to me now into whatever time I have left.
MORNINGS
Sun on the rose, Kisses us awake, To the possibility of hope.
Dry air. Deep cold that penetrates into the tiniest lung cells. Early mornings interrupting fractured sleep. Brain goes pfft, I’m not doing this, regulating the nose, the throat, the heart, and lungs. Let’s go back to bed.
But bed wasn’t doing me good. I had to keep my head elevated to keep the drips out of my throat and descending into my lungs to create bad news.
I dragged myself out to brain biofeedback where I found to my happy surprise that gamma enhancement made my throat stop wanting to cough hack scratch. Phew.
I was also using low-intensity light treatment on my neck and upper back to calm the twitchiness in my throat and lungs. I didn’t know if it would work — I was kind of like how I am on the computer: let’s see what this will do . . .?
It helped, like the gamma did. But the weather continues its assault, and I’m not resting properly. Soooo . . . Just don’t talk a lot!
The 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.
After the amazing HRV numbers a couple of weeks ago, they tanked the following week. Sigh. That’s how brain injury improvement goes, I thought. And then I began getting short of breath in the way that tells me my heart ain’t too happy, which my hypothalamus fix had made better way back when. Oh. Yeah. I’d stopped doing the CES Sleep in the evening portion of my hypothalamus fix. Sigh.
I’d skipped it one night because I was so damn tired from noveling. Novel writing is fun, rewarding but challenging and exhausting. The more tired I get, the more I need to be vigilant in using all parts of my hypothalamus fix: sub-delta audiovisual entrainment session in the evening and CES Sleep first thing in the morning and at some point at night.
I had a little talk with myself and restarted the CES Sleep at night (I hadn’t stopped using the sub-delta AVE session or CES Sleep in the morning). That shortness of breath went, and I could breathe easier again. And last week, my HRV began crawling up again while my heart rate dropped back into the 80s (from the high 90s — a number that once would have been cause for celebration is now too high — that’s what brain injury treatment is all about — returning heart and brain to normal functioning!).
I want to add here that I think the reason why my heart rate and HRV are much, much better is because of the combination of my hypothalamus fix, gamma brainwave enhancement training, and the low intensity light treatment for my neck that includes the back of my head where the cerebellum is located. I went to “laser therapy” for my below-the-head injuries, but in the last few months, I’ve realized how much it’s helped me with my brain injury, how key it’s been in improving the brain’s control of my heart. I wrote about some of that in my concussion book. But because I finished writing it before I fully understood all this and am continuing to learn about laser therapy’s effects on concussion, I didn’t put it in the book. That’s why I created blog pages as extensions of Concussion Is Brain Injury — to update it! I will be updating my related blog pages with more info on laser therapy (see the relevant URLs in Concussion Is Brain Injury: Treating the Neurons and Me)!
Last week’s biofeedback also resolved a puzzle for me. The sailboat screen has the top sailboat sailing from yellow box to yellow box with a thin line connecting the boxes above the sailboat and below the waves it sails on.
So, I see this line as yellow. But after my eye surgery, I saw it as pink. Then my brain began to fight the influx of new visual data to return my vision to pre-brain injury and surgery, and I got confused as to the line’s colour. Was it pink or yellow?
We use this sailboat screen as the third neurofeedback training for gamma enhancement and again as the third one for inhibiting 16-20 Hz and enhancing SMR (12-15 Hz). Last week, I saw without a doubt during the gamma neurofeedback the line was yellow. Then it began to morph. Was that pink appearing??? During the 16-20 Hz inhibit neurofeedback, it was absolutely without a doubt PINK!
The line is pink.
Or is it?
The eye surgery allowed me to see fine details and colours in a way I hadn’t before. And since it, my cognitions involved in language, memory, and engaging with the world have improved a lot. Maybe I’d noticed the pink before but not enough to remember or mention to my brain trainer.
Turns out she hadn’t noticed the line colour changing before but saw it as pink. When we investigated closely, the answer was pretty simple, really. Click the computer mouse on the box to change that sailboat’s parameters, and the line turns pink to show which sailboat you’re changing. Doesn’t work too well with the pink box because the line stays pink!
All these years of using and being trained with it, never noticed before. Oy!
My ophthalmologist told me I have to keep improving the vision in my scarred eye to retain what the surgery gave me else the brain will win this battle. That means practice eye tracking. I’m thinking though maybe I should also up the light intensity during my AVE sessions (animal studies showed light stimulation similar to my AVE sessions regenerated retinas). And also to adhere to walking on streets about 1.5 hours after brain biofeedback when my vision strengthens again so as to use and cement in those networks so that my brain can lose this battle and win at seeing better. It would help to use a neck brace to force my head to sit straight and force using binocular vision but that wouldn’t be good for my neck muscles.
At least I’ve gotten better enough since the shock of 2013 to be able to think about my brain injury issues and deal with them and not resent or feel despairing that my health care professionals don’t collaborate (because my neurodoc wouldn’t know how if it smacked him on the head — his idea of collaboration is to tell others what to think and say they’re wrong when they disagree with him — well, except in the area he doesn’t consider himself an expert in, so that’s going better…anywho). Some don’t have the time, others don’t have the desire to think about and discuss these things with me as they evolve, only occasionally and only within their bailiwick when I grow desperate enough to force discussion. Then I put together what each tells me, add my own thoughts, write about it to elucidate it all to myself, implement, and hope to hell it’ll get better.
I still don’t know why any health care professional, especially my neurodoc and all other medical doctors treating brain injury, think someone with a BRAIN injury should be searching on their own actual treatments, directing their own care, and is even remotely capable of it. The part of you that recognizes, analyses, remembers, and carries out solutions is broken FFS! Sigh.
Last year, after eye surgery, my iPhone display looked enormous. These days, it looks teeny weeny. Amazing how adaptation changes perception. I no longer get dizzy moving my eyes across a wide screen. My brain is used to the sharper-looking text and more depth in the screen colours. My panoramic vision isn’t solid yet, but I’m used to seeing my iPhone display left to right, top to bottom, in one go. No more bits missing like before the eye surgery.
I still very occasionally get double vision, partly because my brain is still fighting to return to my pre-surgery default and discard the new binocular information. But brain biofeedback at PZ (top middle back) to inhibit 16-20 Hz, the thinking brainwaves, seems to be helping me win that fight.
(They call the excessive 16-20 Hz “high-beta spindling.”)
Slowly, panoramic vision outside on the streets and in parks is solidifying – one marker of that is being able to cross side streets without having to consciously narrate every step like I have had to since the eye surgery. Now after brain training I can see the traffic on both peripheries of my vision and process it in real time.
My proprioception is improving again; I’m able to distinguish myself in space with full up-down side-to-side awareness, which means I’m not returning to my old default with bits missing in that awareness. (I’ve just realized I don’t keep bumping into door jambs like I used to!) The first week of November I was able to discern the bottom step of the TTC stairs from the landing peripherally (and for the second week through my feet too) while looking ahead at a fixed point and walking down slowly and carefully.
This is huge!
Being able to go down the visually inaccessible steps on the TTC is a lot safer when one can see the low contrasts and feel the differences. It’s a lot of work and fatiguing trying to navigate the bloody TTC when not able-bodied, able-eyed, able-brained. Have I mentioned I hate it?!
Let’s think about more positive things — like my heart! This week was another in a series of OM Effing G!! Did you seeeee that?!!! As I mentioned before, the goal back in 2012 was to raise my HRV (the measure of how well my heart syncs with breathing) from the basement to a modest 10 and to lower my heart rate from freaky 130 to double digits. Also, to get rid of the scary-ass rises to 170 and drops to 30-50 beats per minute. It’s been a slow slog. Low-intensity light therapy (concussion protocol) where the lights are over my cerebellum definitely began to move things along in the right direction. But now–
My low frequency HRV got to 8.57!!!!!
8.57 uV for low frequency heart rate variability (HRV) during HRV training — basically deep breathing — is stupendous enough but to get 8.24 during gamma brainwave training and again have LF higher than sympathetic nervous system activity (VLF) is WOW!!
LF wasn’t as high during PZ training to inhibit 16-20 but look at that — 5.36 during the first neurofeedback screen! Sweet.
Reducing my 16-20 Hz brainwaves is not only cementing my improved vision, it’s also been working on my trauma-related round-and-round thoughts that whirl up grief, distress, hurt into an ever-intensifying tornado. I didn’t mention the emotion effects to anyone because we were focused on my vision and I wasn’t sure if it was for real, but recently I’ve become sure. My thoughts drop out of the whirling and into clear thinking. Clear thinking is the antithesis of trauma and flashbacks. Clear thinking settles emotions. Relief. Even if it’s only for a few hours or days.
But how is reducing high-beta spindling helping my HRV too?
I came across an article that said the cerebellum is involved in emotional control. We already know it’s tied into the heart via control of the autonomic nervous system. Soooo, using logic — if the cerebellum is involved in emotions and so is the area around PZ, then they must network. And then flow from the emotional control part of the cerebellum into the heart control. Brain injury and healing of injury is like exploring the brain.
I’m back on the weekly brain training track: enhance gamma (39-42 Hz) brainwaves for three neurofeedback screens; inhibit 16-20 Hz and enhance SMR (12-15 Hz) brainwaves for the next three neurofeedback screens. The latter three are supposed to help me adapt to and keep my improved and more efficient vision, perception, and proprioception.
Right after this week’s training, I got a taste of the latter.
I normally go down most TTC steps slowly and carefully. It’s easier and quicker to walk down their stairs when my eyes are on the steps in front of me instead of looking ahead. But with that method, I only see the steps. I don’t see people coming at me or signage or anything else. So I make myself look ahead. Gotta see what’s around you! The problem is the last few steps. For whatever reason, they give my feet the willies. I slow down and stop on them, look down, then continue to the landing. The step I stop on has been improving from two or three steps before the landing or the second step before to the last step before. This week (for the first time?) I felt distinctly the difference between the texture of the step and the texture and flatness of the landing. Yeah, I’m wearing shoes, but I could feel a difference in the hardness and how the landing had a bit of a dip from where many feet had worn down the terrazzo. Being able to feel the difference made it easier to know where I was and give my feet confidence to keep stepping down until I touched down on the landing. I didn’t have to look down to check (though I did from habit, except the last time — sweet). Since this is all at the conscious level and not yet automated, I do it slowly, slowly. As my brain learns and stops trying to return my vision back to what it was used to (so annoying), it’ll become automated gradually and I’ll be able to speed up and do it automatically like I used to before my eye surgery.
The TTC uses an enormous variety of tiles for its steps. Most of them have low contrast. My fave is when they replace a light tile with a dark grey one — makes it grab my eyes, scream look at me, look at me, as if walking down and up TTC steps wasn’t hard enough. Just another wonderful example of the TTC’s systemic discrimination against those with visual or cognitive impairments. I guess we’re not supposed to use public transit.
Anyway, getting a taste of my increasingly efficient proprioception was way cool.
Something spectacular happened. And happened again. My heart rate dropped into the 70s and stayed in the 80s during brain biofeedback two weeks in a row. And my HRV (heart rate variability) hit 6. Six!!! Back in 2012, two was good news, and ten was the goal. So five years later, more than halfway there. (By the way, athletes have HRVs of 60 or something silly high like that. But even old people are higher than me.)
My EMG (muscle tension) was also below 2.0 uV for most of the training for the first time in months. I’ve been a bit stressed, and it’s shown up in my jaw muscles. But turns out getting Invisalign to straighten teeth banging painfully into each other has the rather nice side effect of relaxing jaw tension. (You’d think going into debt for my teeth in our universal health care system we enjoy here in delist-as-much-as-we-can-so-we-can-employ-more-hospital-admin-Ontario would counter the relaxation.) Was that also why my heart rate went down? Apparently, I have a narrow airway so maybe when these things are in my mouth, I get more oxygen. Or maybe not.
Maybe it’s doing more to ease my lower back or maybe it’s taking a new anti-inflammatory for joint and muscle pain after exercise. It contains devils claw (what a name), ginger, chokeberry, Angelica gingas, turmeric, and green tea. Apparently, Angelica gigas (dang gui) has been used in traditional Chinese medicine for circulatory health. Was there enough in my not-quite-daily intake to strengthen my heart and improve brain control of HRV??? There’s no doubt my brain is improving rapidly again; that means more resources to control autonomic functions like the heart. I still get short of breath though, so I gotta be careful not to push the limits just because I’m thinking clearer, am more alert, am improving control over my emotions — the latter only as long as I use SMR/Beta L13.5/R18 Hz audiovisual entrainment most days. And most of all, the chaos in my head really is GONE!!!
I really think that the three sessions of gamma enhancement and three sessions of SMR enhancement and two of 16-20 Hz inhibition, along with the concussion protocol of the low-intensity light therapy that kickstarted the heart improvement is most responsible and the effects are beginning to show.
Topping the amazing heart news is the miracle that happened last week during my first gamma enhancement neurofeedback screen of my brain biofeedback session. For one minute and thirty-six seconds, I was in the zone. In what psychologists call “flow” and what brain injury took from me. That sweet feeling of being so deep into a book or work that the outside world disappears and your mind and brain hum along in harmony. I was oblivious to my brain trainer’s noisy typing as I followed the virtual triplane in its swoops around its virtual mountain island. My delta-theta brainwaves that always show my brief (or lengthy) distraction as she’ll suddenly bang a key or mouse hard, stayed down and didn’t spike until at one minute and thirty-six seconds, I heard her typing like some sort of loud office cacophony. (Part of the training as you progress is to try and distract you so that your brain will work harder and you’ll learn to focus in a distracting environment.)
We both went WOW!!!
Flow IS possible for me. Disappearing into a book again IS possible for me. Sweet mother, I could weep. But am too stunned and unable to process this unreal progress. Will it happen this week?
I had problems with my WordPress app when I went to post this blog post. Totally forgot I hadn’t once I got the app working again. So here it is, a few weeks late!
My brain trainer was off on a well-earned, long-overdue vacation. So I got three weeks (two sessions) off too! All the new PZ training wore off after two weeks. But returning to training wasn’t quite like starting anew. The brain retains the “memory” of having done this before. I wasn’t as nauseated nor became so as quickly as the first time. And it wore off within a minute during the same, first PZ neurofeedback screen. I’d regressed to being one-side dominant again in my vision, which I only realized during the second PZ screen — I felt my perception shift to bilateral again. Also, I saw the panoramic view as one continuous whole again (why my brain is fighting to ditch the new info and return to my old vision is beyond me and bloody annoying). The second screen is to enhance SMR only, while the first and third also inhibit 16-20 Hz. The latter is way harder.
Between this unreal summer heat, my usual September fatigue, and resuming a new-ish brain training, I was overheated, a bit short of breath, and kaput afterward. I also began the day having to self-narrate my day’s routine, things like get breakfast, time clean your teeth, you’re supposed to be leaving for the TTC because you’re not staying home today — simple stuff like that. That brain injury habit of not automatizing things includes habits and routines. Ugh. It means having to consciously remind oneself when resuming a routine even though memory is working and even though been out of the routine only two weeks. Sheesh.
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Brief vision update here. I don’t want to jinx it, but for the last couple of weeks, my far-distance and panoramic vision seem to have stabilized. Does this mean my brain has stopped trying to shut down the firehose of new visual information that the surgery turned on? Does this mean it has ceded the battle and is coming to terms with both eyes working together and feeding more efficient data to the visual cortex?