Books

Manuscript for Concussion Is Brain Injury II Submitted to Editor

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I made my deadline! I submitted my manuscript for Concussion Is Brain Injury update to my editor. She’s now doing a developmental/structural edit — looking at the big picture, content, storytelling. Grammar and spelling edits come in the final copyediting round in June/July.

The last week to meet my deadline was deadly. I’ve not worked so many hours since my brain injury, and even though Cogmed increased my mental stamina substantially, my body couldn’t handle it. Thermoregulation went out of whack — too hot and burned and feeling of cold burn in my fingers and feet — edema, and that opportunistic infection shingles burst out of the inactive chickenpox viruses in my nerves. So much fun. My hands hurt (less now but still do), and I couldn’t think well outside of my book. My vocabulary in conversation is still a little shot. I didn’t go out, walk, or do some of my daily living routine for a week because no energy left over to do them. I took lots of Star Trek: Voyager breaks in between chapters or scenes or ideas — Voyager is familiar from before my injury so little cognitive action needed on my part to watch!

I didn’t expect how euphoric I’d feel seeing the word count dropping just below 100,000 and hitting Send on my email to my editor. Felt soooo good. And the feeling lasted a couple of days. What a contrast to Lifeliner. Back then in 2007 my affect was still mostly flat plus working on the book had been delayed twice, the second time by 7 years so I was just relieved to have finished it. This time relieved AND pleased with myself.

Although I’ve been calling this an update, it’s turned out to be a major rewrite to the point I’m adding a subtitle for sure and am almost wondering if I should change the title . . . Nah. I like the title!

Well, I got 4 weeks off. What shall I do? Check links!

Books

Writing with CCAC Therapists: A Concussion Is Brain Injury Update

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I’m partway into my 6-week sortie to the past, writing my Concussion Is Brain Injury update. During the early weeks of my recovery from eye surgery, I drew a new outline. Over the months, as my eyes were able to perceive text on the iPhone then wider high-resolution iPad in portrait mode, I put it into Scrivener, copied chapters from the original Concussion Is Brain Injury and moved, merged, cut them. But the surgery did something to my writing too. My neurodoc agreed: it was simplistic, he said. I felt like all the colour of my writing had been flattened into grey, with my words grinding out slowly. During NaNoWriMo, the long fingers of the surgery and general anesthesia loosened their grip on my writing; my creativity began to re-inflate.

But my chapters were still disorganized, my writing wasn’t back with all its colourful speed. I wasn’t able to read what I’d written, although I was reading my old chapters with my mother as a way to recall what I’d written back in 2012 as well as to practice reading.

Reading! Pfft. It’s always practice practice practice. Trying to get it back. But I digress.

My neurodoc wrote CCAC last Fall, telling them I needed help. I’m not sure how many weeks it took him to write the referring letter or how many his secretary spent trying to get them to acknowledge and respond. But I finally had a meeting with the Clinical Director and the sole Toronto-area Care Co-ordinator for brain injury — the only one left because that’s how community care for ABI rolls under Premier Wynne’s vaunted funding increase. Let’s cut what’s already too little. But I digress.

We waited until I’d completed Cogmed, gave me some time to recover and then chose the right behavioural therapist for me. They asked me for if I preferred the behavioural therapist assistant to be female. I didn’t care. Apparently women prefer other women for creative work. Maybe because I’ve often been mistaken for a guy (not in person at least!) and I was brought up in a culture of true equality, it doesn’t matter to me. Then I blurted out, well, not a white male. Me and white male health professionals seem to lock heads. That got a laugh! Nope. He’ll be Indian. Oh cool. My people!

Not really; more like the people of my childhood turning up in my life decades later in Canada. Anyone with Zoroastrian relatives is really my people — culturally. But Indian is close enough. Canada and Canadians in all their multiple glories is where I belong though. I wouldn’t want to live anywhere else. Paradise is what we immigrants call it. But I digress.

In case it’s not clear, I’ve gone from post-surgery fractured memory that sealed itself back up to wandering, distracted focus. I think that reflects the heavy cognitive toll of writing my book’s update.

Anyway, the BT and BTA (don’t you love health care acronyms?!) have been coming to my home three times a week between them for 1.5-3 hours at a time. I wasn’t sure I’d have the mental stamina to work 3 hours straight. But Cogmed seems to have increased it incredibly. Yeah, my brain hurts, my thoughts grind to a stop, but I also learnt during Cogmed that yoghurt with nuts, fruit, chocolate mix and a few minutes rest recharge me enough to keep going to the end. Then I could really rest! Star Trek: Voyager FTW!!

So what do they do? The BT broke my book’s sections down into a schedule and divided them between her and the BTA. She talks to me about how to approach the book and helps me with the tough chapters from a clinical perspective. She gives me the courage to write and the permission to rest a couple of days. And she kicks my butt by giving me accountability for getting my word count down (which keeps going up, down, up, down. Argh!). She’s also giving me outline homework because I keep forgetting to update the outline as I go along.

The BTA sits beside me with my manuscript on his laptop and I with it in Scrivener on my iPad, and we read silently together what I’ve written. Without him there, I can’t initiate to read. I notice what I need to cut; he asks me if something belongs or discusses with me an idea until I understand what I want to say. He also gently tells me I need to focus on one chapter a time and how to note down things I come across for other chapters without leaving the one I’m working on and go haring off in a different direction. He’s reminding me to stay focused.

We go through my brain injury-related likes in Twitter together. At first, he simply emailed me the ones we’d decided were relevant to my book so they’d be in my inbox, ready to be read and incorporated. Then he noticed I wasn’t doing anything with them. That reading and organizing thing was getting in the way.

So he made me go through each one plus new ones, as many as we could get through in 3 hours, had me read or watch enough to know which chapter it belongs in then stick the link in the chapter’s Notes section in Scrivener. Now all I gotta do is incorporate!

This is absolutely amazing. Without them, my book would still be chaotic and not as well written. It probably would still be staring at me, going, well, are you going to finish writing my update?

With them, I have a submission-to-my-editor deadline, I’m writing regularly, I’ve gone through my bookmarked research links, and begun checking out images for my cover. I wish I had them until the book is published. But I feel lucky and grateful and excited I have them for the toughest part: the writing.

Brain Health

Cogmed Rehab of Brain Injury Working Memory Over!

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Cogmed is over. I’m both really glad and kind of sad, for it’s been five weeks of something different that also makes me feel like I’m regenerating my brain in real time, not the usual let’s wait a couple or more months or years (or decades with traditional rest and strategies) and see if this will work. The usual takes patience and faith!

Leaping into Cogmed took faith too. But not as much patience. And interestingly, it gave me the ability to be patient with my fatigue.

Cogmed is like taking the toughest school test you’ve ever had when you’re at your most tired and trying to stay fully focused while being wise in timing your breaks the entire hour to one and a half hours it takes. First two or three weeks, fatigue got to me. The deep, deep desire to nap would overwhelm any sense and sensibility, and I’d rush through the rest of the exercise then lay my head down till my eyes would open and go on to the next exercise, repeat, until with a heaving sigh of relief, I’d be done. And could go watch an animation movie on Netflix.

But in the last ten or so sessions, I began to notice a change. I no longer absolutely had to sit and watch blankly an animation movie while inhaling chocolate right after my Cogmed session was over. I could maybe put laundry on then go watch any kind of movie. Even better, I began to be able to stick with my method of deep breathing, adjusting my vision to peripheral or eye tracking, focusing right to the very last try in the very last exercise. No more rushing just to get it over with and go watch a movie so I wouldn’t have to think any more. After about session 18, I became more methodical in my rest breaks, having noticed that too-short breaks resulted in not great performance but too long also didn’t work well. My coach mentioned in a couple of our early calls about staying in the rhythm of the exercise and not taking long breaks between tries. That’s difficult when fatigue is pulling down on your eyelids, making your hand jerk the mouse spastically leading to errant clicks, and your brain on an unconscious level is trying to reassert my old vision and narrow my new wider peripheral vision back to my old narrow focus.

So I focused hard on the task, put all my effort in to keeping my eyes open, and tried a quicker method of just taking a sip of water in between tries during the Rotating Wheel of Joy exercise. That worked. Then from Day 17 or 18 to Day 22, I expanded that method gradually to the grid exercises and then the number exercises. I had felt that methodical with breaks worked better for the latter; also the patterns of numbers bled from one try into the next if the break was too short.

But on Day 22, I went for it: I stayed in the rhythm of every exercise, at most sipped some ice water, only stretched my neck and shoulders to wake me up and stick my face in the feeble sunlight in between exercises and only rested for 10 minutes between the first set of four exercises and second set.

Unbelievably it worked! My daily index and Max Index both shot up.

It definitely wouldn’t have worked in weeks one and two, even in weeks three and four because I didn’t have the mental stamina.

Fatigue makes one hit the proverbial runner’s wall: you can’t see or think never mind remember anymore or remember so slowly it’s like watching molasses ooze down a glacier’s side as your memory finally comes into view so that you know what to click. You need confidence the memory will come into consciousness eventually and the patience to wait.

Somehow this intensive memory training has improved my stamina so that by the middle of the last eight sessions, I could stick to my method to the end, work quicker, and improve my performance — and all without my head hitting the desk in a dreadfully needed mini-nap time.

The number exercises are my absolute best ones. Grid ones and most movement ones are in between. My absolute worst are Twist and 3D Grid of Doom. My vision and eye tracking are the reason I do poorly. And too late I realized my depth perception being so new and my brain trying to shut it back down again is why I haven’t improved at all in the 3D Grid, the only one I haven’t improved even a little bit. Even Twist has improved a tiny bit — that’s with most of the time the patterns I’m holding in visual memory disappearing the moment the 4×4 grid twists back 90 degrees before I have to click the sequence I saw lit up.

Having tried Cogmed on both the iPad and the computer, I’d say that the computer with its bigger and thus more challenging display is better to work my peripheral field and eye tracking. I think working on the iPad helped me understand the exercise and train the eyes to know what to do. But after that, though much harder, the computer display is better at training peripheral vision and eye tracking and thus improving and retaining the improvements, like my head staying straight and my weak eye continuing to work with my stronger eye.

One of the best parts of Cogmed is that I had absolute control. The problem with brain injury rehab is that you depend on others to make it work. The person you depend on has all the control, even when they claim you’re trying to hold onto control (ie, when you demand, beg, ask for, fight for more help) and they claim being controlling is your issue. You’re screwed if they don’t feel like it, it’s not within their regular practice, it’s not how they operate, they only have time for some of what you need, they prefer to refer you to someone else — which entails waiting months or years never mind more hours in the waiting room because hey you don’t work anyway so your time ain’t worth much — they cut you off as you’re improving but before you’re stable. There’s nothing you can do but accept the inadequate help and hope you can live within brain injury hell under the cover of gratitude and a positive vibe without going insane.

But with Cogmed you have all the control. You do as well or as poorly as you want within the limits of your own neuroplasticity.

No one can let you down.

So rare, so empowering, so uplifting when you begin each session reminding yourself that this rehab is yours, all yours, and no one can let you down or undermine your efforts.

Improvements I’ve seen so far:

Reading speed quicker.

Reading length longer.

Short-term ie immediate recall of what I just read or someone read to me increased, richer depth of detail, quicker and for longer to speak it out.

Perhaps better long-term recall — this has been tested only once in a clinical setting. It was good.

Intonation of reading is up: I don’t read in a monotone anymore. I even put in a character’s tone in dialogue after Day 22 of Cogmed.

Walking is quicker; after 20 sessions, it’s normal in all areas I’m familiar with unless people suddenly rush past me or a group is wandering (how my brain perceives others walking) towards me. My eye surgeon advised me that the last part of my visual system to adapt will be motion:
Me moving while others and objects are also moving. Sometimes it feels like I’m on some psychotic tilting sidewalk trying to navigate people. Anywho . . .

Better stamina for cognitive work.

Starting to be confident of my cognitive skills because my memory of what I read is much more reliable.

My coach was sick so I have yet to have a final call with her. But the program told me that:

My working memory is up 57%.

My ability to follow instructions is up 24%.

And my math performance is up 1%.

Why is math barely improved when my affinity for numbers means those exercises just keep on going from one level to the next? Processing speed, peripheral vision, and fatigue. I can feel my neurons slowing down, the answers being held behind a viscous wall through which I’m pulling and pulling until they finally pop out while my peripheral vision narrows and narrows so I have to eye track every number in the equation and in the answers next to the arrow keys so that I know which key to press. And fatigue drags down my ability to keep at it. It’s the same issue I have when trying to calculate the tip on a restaurant bill for my mother. What I once could do in my head and rapidly too, now is arduous. After a year or so being completely unable to do it after my brain injury, I lost all confidence so that I wanted to avoid it. My mother’s math ability is worse than my injured one, so she won’t let me avoid it. Still, I usually throw out a guess instead of methodically doing it even in the last week of Cogmed. I guess patience through fatigue and slow processing hasn’t translated to math in the real world yet.

Cogmed and the ADD Centre say that improvements continue for the next six months. That’s why there’ll be a final assessment around June. Also, I will be taking the option of 100 maintenance mini sessions. I also have three regular sessions as make up ones for where I encountered technical snafus because of my hand jerking or finger double tapping on the iPad (the software should recognize and ignore tic-like double taps). They do warn tics can increase. And they did, but then in the last week, they decreased!

Whatever happens in my life, this accomplishment can’t be taken from me.

Brain Health

Cogmed to Train Working Memory — An Experiment to Help Post-Brain Injury Reading Rehab

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I’ve begun Cogmed to train my working memory, that brief moment you hold something in memory in order to accomplish a task or store a piece of knowledge before you forget then scratch your head as you futilely try to remember what you were doing or reading.

The folks at the ADD Centre had told me about Cogmed a few years ago, but between lack of funds, lack of social support at home, and lack of energy, I declined at the time.

But I’ve spent most of 2016 stuck at home, and despite floods and pests trying to suck up dollars, I’ve saved a lot in medical costs. (Unfortunately, Virginia, there is no such thing as universal health care in Canada. What we call universal covers only the basics and no treatment outside of hospitals, especially for brain injury. There is no Santa Claus of health care despite the Canadian myth.) Also, I hate this time of year, too many long-term traumatic memories, and needed something to consume my brain space.

Cogmed is an online course you do about 1 hour per day, 5 days per week for 5 weeks. It’s intensive, and part of the pre-admission interview is to ensure you have the time and are not planning on doing anything else beyond your usual routine. (You really don’t understand how intensive it is until after the first 5 days when you reach your optimal memory level.) Also, they tease out whether your issue is attention or memory. Since my attention has been well treated at the ADD Centre, and as long as I’m in a quiet environment, I’m not likely to be distracted, memory not attention is my issue now. They want you to do Cogmed in a quiet place anyway. They also ask you about your sleep — they have my sleep study results — and current level of working memory — they assessed me most recently just over a year ago. It helps being their client: I don’t have to gather up any test results to send to them!

They take you through a demo then send you all the login details. While they set you up, you work out your Cogmed schedule; weekly and maybe daily rewards and a final one to help motivate you to keep going; and a time for your weekly 15-minute coaching call. My coach sent me the best times for her, and I picked when good for me too.


I had trouble coming up with rewards. My coach was patient, gave me some suggestions, but was thrilled when I came up with pretty inks for my fountain pen and a new groovy fountain pen for my final reward. During our coaching call, which happened on Day 6 of my Cogmed training, she also suggested a small daily treat as I had reached my optimal level and would no longer see the big daily improvements I’d experienced during week one. The program is designed to make you feel good in week one; then it gets tough. Lots of tries and fails at the same level, no going down a level quickly so that you have a success.

Anyway, I’d intended to start on a Monday, going Monday to Friday, taking the weekend off. But then realized the first two days of the week are actually my toughest. I need energy for this! So I began on Saturday. I tweeted:

17 Dec: I’m going to start online CogMed training,see if we can get my working memory to, uh, work. Step 1: schedule it. W #braininjury not done yet.

Cogmed. Round 1. Oh. My. God. My forehead crushed then: got my highest score on the very last exercise. 8 on Reverse Numbers! 😯 #braininjury

Cogmed cool down: Zootopia (English voices; French text Netflix). Still hv concentration headache tho pumped completing day 1. #braininjury

Dec 19: Cogmed Day 3: improve on prev 5 working memory training exercise but the 1 I forgot the instructions for. Ha! 3 new exercises. #braininjury

Dec 21: So an astounding thing happened at brain biofeedback: my HRV went up to 4!!! My heart rate dipped into 70s briefly! Holy f—! #braininjury

Cogmed Day 4: I suck at Sort. Numbers are my friend. Um, number of Assembly levels barely fit on screen already. Yikes! #braininjury

Dec 22: Cogmed Day 5: 3D Doom doomed. That rewarding sound à la The Game silent too much. But then picked up w rest of exercises.Phew. #braininjury

Dec 23: Cogmed Day 6: crash breathe! Coffee! Eggnog! fight breaks out twixt eyes & brain Somehow I improve. 😳👏 #braininjury #eyesurgery

On Day 7, I hit a wall, a mental wall like the famed runners wall. I’d only taken Tuesday off my first week and launched right into week two. My coach said to take either Saturday or Sunday off since I’d done my 5 days in the week and could afford the time off. Plus I needed it.

I felt good after Christmas Eve family service. Loads more energy than some days! I didn’t want to do Cogmed on Christmas Day after all, now the idea of a day off had been presented to me, soooo…

I was good in the first 12 minutes or so. I positively zipped through the early exercises compared to Friday. I even did slightly better on 3D cube of Death, um, Doom. But in the third-last exercise, my best one — Hidden — with only 2 or 3 tries left in it, I hit the wall. Brain stopped working. Totally. Oh-oh.

It would take hours to recover, I knew. But I had two more exercises to do. OK, I’ll run on instinct, I decided. That worked for Rotating Wheel of Joy — unbelievable! But for Numbers: complete miss. I got a few “Close” ones, meaning I missed only one number on each try — apparently Close is good because it means I’m pushing — yeah, no kidding. But no hits at all, wow. So glad I have 3 days off! It’s going to be optimal training from now on: always training me at the upper level of my memory. If I get one or two hits for every miss, I’ll be lucky. But a pushed brain is a brain that improves!

Brain Biofeedback

Happy Gamma Fights Brain Injury and PTSD

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The substitute brain trainer I had last week meant I could persuade her to do extra gamma brainwave training. My next appointment wasn’t for a month, and I was looking for the de-stressing effect of gamma brainwaves.

I had no idea the surprise gamma would give me!

First surprise came right after: the stairs at the ADD Centre office confuse my brain. No contrast, my CNIB orientation mobility trainer explained. But after gamma training, I was halfway down the stairs when I suddenly realized I wasn’t using my cane, I was walking down them normally. Whoa!

Second surprise: the street was so visible. I’d forgotten how enhancing gamma brainwaves upped my perceptual abilities.

Third surprise, related to the second: I knew where the cars were when I approached the first street I had to cross. I slowed down to check in a systematic way, but my brain knew automatically where the cars were, what they were doing, that I didn’t have to stop to check, that I could cross safely. Holy s—!

Fourth surprise: zero anxiety about the traffic. Zero. Do you know how freeing that is, to be confident in knowing where cars are and what they’re doing and not having anxiety that you’re going to be hit or that you missed seeing a truck coming at you? Very freeing!

Fifth surprise: happy gamma. I’d forgotten how enhancing gamma brainwaves puts you into this happy-speak-quickly-bounce-down-the-sidewalk state (assuming you can bounce).

Sixth surprise: looser body. I had no need to lean on my cane and had much much less dizziness and so didn’t have to regroup every time I crossed an intersection. And I walked faster. I doubled my walking speed and on Yonge Street to boot!

The day before my brain biofeedback, I had practiced crossing the Yonge-Lawrence intersection with my Vision Mate. Each crossing looked impossibly long, the entire square like death waiting. When he trains me, my CNIB trainer walks on my right side at my speed, staring at drivers who try to beat us or get too close in their impatience while telling me they have to stop and it’s OK that we reach the other side on the all-red part of the cycle. My Vision Mate, being new to this, was not so sanguine, and she had me take her arm and cross at her speed. I was soooooo relieved to finish crossing that intersection; my brain was overloaded from the speed of walking, cars blocking the pedestrian crossings, fire engines screaming, dump trucks banging up Yonge.

But when I stood at the same intersection after gamma enhancement training, the distances looked normal, the traffic not a big square of death. It actually looked doable!

I reminded myself that I was still finding movement dizzying. Crossing would challenge my tolerance for motion of speeding cars and cars trying to beat me as they turned right in front of me. I took a pass, just happy that the intersection had returned to normal in my perception.

Seventh surprise: things that I had been thinking about, had been unable to initiate for days, I got done the moment I walked in my front door. Whoa! Bonus: my new vision from the surgery meant I could thread hooks into grommets on the first try.

Eighth surprise: my speech continued to increase in speed for several hours to the point that one person I spoke to late that night said I was racy but in a good way and I worried I wouldn’t be able to sleep I was feeling so much like I was bouncing off the walls. (Sleep was OK.)

I wondered at the startling effects, so much like when I first trained gamma. I wondered if when stress had depressed my foundational SMR brainwaves at CZ last year, it had also depressed the gamma brainwaves? We’re retraining SMR; now I have an argument to also retrain gamma.

I spoke to the Clinical Co-ordinator. We’re going to do one three-minute two-display screen that enhances SMR at 12–15Hz, enhances gamma at 39–42Hz, inhibits delta-theta at 2–5Hz, and inhibits busy brain at 24–28Hz. We’ll add a second two-minute training with that same screen, alternating with reading training as I slowly ramp back up to full training of three 3-minute biofeedback screens.

As I expected, the perceptual effects vanished after less than 48 hours, and my walking practice was the same as usual a couple of days later, except that the anxiety-dropping effects diminished slowly, and so I was able to cross bigger intersections on my own.

The happy gamma began to drop by the next morning and was gone by the second morning. It’ll take several sessions for the effects to last longer and longer. I don’t know how many sessions I’ll need to make the changes permanent. Because my stress is so high, perhaps it counters the biofeedback and the training just needs to continue on.

Brain Biofeedback

Easing Back into Brain Injury Health Care After Eye Surgery

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Well, it had to happen some time. I’ve restarted two-thirds of my brain-injury-care appointments. As of this past week, I have returned to using the TTC on my own – solely to get to brain biofeedback. So I’m not exactly using the entire TTC on my own, just one well-practiced route!

As expected, it took me a lot longer to get there by myself than with my CNIB orientation mobility trainer, even when he was shadowing me and out of sight. My slowness wasn’t just because it’s scarier going solo, it was also no one was around to push me to keep going: I’m dizzy? Sit! Brain feeling the effort? Sit! Had enough? Sit! Or lean against a wall since benches aren’t plentiful in this progressive city of ours.

One of the nice things about the boomers getting older is that benches are at long last popping up on some streets. Still too few though.

It took me double the time to walk to the ADD Centre from the TTC sans my mobility trainer; sooo about, uh, hoo boy, a bazillion times slower than prior to my eye surgery. Well, OK 5.4 times slower. On the plus side, last week I was only 1.2 times my normal speed in quiet, now-familiar areas where I’ve practiced my walking many, many times. And this weekend, in the same quiet areas, I’m pretty much at my old speed for about 15 minutes of walking sans any rests and except for crossing streets.

Anyway, my brain trainer told me when I asked that my CZ SMR brainwaves have dropped since June.

SMR: sensorimotor rhythm or 13–15Hz, the foundational brainwave in the area that loops from the outside of the brain to the critical thalamus deep inside. They are the brainwaves of relaxed, focused attention.

Social isolation takes a toll on the brain. It should be fucking obvious to every human being who looks beyond their navel, but apparently not in North America with its cult of busy-ness and every person should shut up about and look after their own disability. Isolation is either chosen (some people have been taught it’s safer emotionally-speaking to be alone) or imposed when family, friends, neighbours, health care workers take zero initiative to reach out to the person who’s lost their independence to ensure they don’t lose their biologically-critical social life too. Small towns and England are better at reaching out or as one community worker put it: reaching in. Reaching in to the hurting person, the suffering person, the ill and injured is how we prevent brain damage from social isolation. But not even churches in the big city of Toronto are good at it, preferring to wait for parishioners to call up, nag, beg before fellow congregants can look away from their look-how-compassionate-I-am-I-volunteer-for-the-homeless (or African communities) Pharisaic stance to spare a glance at the suffering in their midst and do something about it. The ones who are most invisible are the ones they should be reaching in to. But that takes not following the disciples to town but following tired, hungry Jesus to the woman at the well – compassion plus effort, don’t you think?

@ShireenJ: Guest on @CBCOntarioToday: “As a community, it’s OUR responsibility to be reaching in.”As person w #braininjury rarely exp’d that. WldB nice”

Anywho, my brain trainer and I have re-established the routine of 30-second assessment, 3 minutes of HRV (heart rate variability), and two screens of biofeedback: inhibit delta-theta (2–5Hz) and busy brain (24–28Hz) and enhance SMR (12–15Hz) and if possible gamma (39–42Hz), ie, gamma when we can use the computer that allows for two-display biofeedback screens. My muscle tension was above 2 this past week but came down nicely, as did my delta-theta.

I’m pushing my neurodoc and the ADD Centre to see about treating my reading difficulties better. To that end, we did a 3-minute assessment over Broca’s area at FP1-F3 and 3 minutes at the corresponding area over the right hemisphere at FP2-F4.

It’s been suggested to me that getting a diffusion tensor imaging scan would aid in finding out exactly where the injury broke my reading cognition. A DTI will show the health of my neural networks. The problem is that whereas out west they offer that MRI-variation scan clinically, in Ontario they do not. The Kathleen Wynne government doesn’t pay for it clinically, apparently preferring to spend health care bucks on things like more administration since 39% of community care going to admin is not high enough and managers are way more important than doctors, nurses, therapists, and scans, don’t you know.

So we may have to continue to guess the best we can and wing where to treat the brain while continuing to practice reading. Meanwhile, my neurodoc isn’t into facilitating communication since medicare in Ontario doesn’t pay for phone calls, emails, texts, and he doesn’t believe in answering questions left on voice mail or even acknowledging receipt of any communication. So tough shit if you keep forgetting to ask things when see him, can’t read notes to help you remember, and email (or in our security-conscious world, text) is only way you can express yourself and actually get it done. Gah. So fed up with it all.

Brain Health

Walking Continues to Improve; Getting Stronger after Eye Surgery

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Walking improvement continues in sudden leaps and expected plateaux. After first two weeks of October, I suddenly improved in speed by about 12% to at times 18% in addition to walking smoother, more competently (as in normal gait, firm footfalls, balanced bilaterally most of the time). At some point in first three weeks of October, nausea disappeared entirely (except for during a needed foray into the Eaton Centre – gah!). And dizziness dropped a lot. It helps that I’m wiser in managing my activities so as not to bring it on.

I’ve discovered though that using an SMR audiovisual entrainment session about 4 hours before taking the TTC to my brain biofeedback or an SMR/Beta audiovisual entrainment (AVE) session before my walk makes a huge difference (that is, entrain 14Hz brainwaves or 13.5/18Hz ones). I am smoother in my walking and can walk quicker sans getting dizzy.

I’m working on improving my speed and stamina, and these sessions definitely help me.

This weekend’s walking practice was done sans using a session beforehand. My head felt it. My stamina was better than last week, but I became dizzy at the same speed of walking as last week. And my head pretty much stayed dizzy-fuzzy-fied because, naturally, I didn’t slow down much, except when on a main street and crossing intersections. I haven’t sped up on the latter in several weeks; crossing streets on my own for the first few times is even slower. But everywhere else . . . Faster, faster! So much for being wiser. But I was on a mission: to improve my stamina at a decent speed (which, by the way, is still slower than pre-eye surgery but not by much on familiar streets).

I realize now that my experience on Yonge before my biofeedback treatment was also because that day I hadn’t used an SMR session beforehand. My brain was not as prepared to handle the plethora of visual and auditory stimuli as it usually is. I’ll have to ask the ADD Centre if it’s OK to do an SMR session before or if that could overload my brain with too much work.

After I realized that the medical model doesn’t provide treatment for brain injury (strategies aren’t treatment, people), and I began looking for ways to repair my brain, I have been pretty much overseeing the big picture of my care. No GP, no specialist has done that in the last decade or so. And before that, it was really monitoring and prodding me to go figure it out. After an emotional shock about 3 years ago, I stopped being able to do that. And so between that dropping of the baton and the shock, I haven’t progressed nearly as much as I could have because no one took over overseeing the big picture of my care and guiding me on my non-pill “medications” aka AVE and CES (cranioelectrical stimulation) as my needs changed, not even my neurodoc. When it comes to brain injury, 100% of the doctors I’ve met consider it too much work to read up on, consult, learn about my kind of injury and/or how to use AVE/CES or how to oversee the totality of my care.

I realize now it’s a pipe dream hoping for my neurodoc to understand and oversee my entire brain-injury health care picture (I leave out of the equation my other medical issues, though he is currently looking for a blood pressure specialist [at his rate, he may find one in 2018]). But I’m feeling stronger recently. I was told it takes 3 to 6 months for a person with brain injury to recover from general anesthesia. As of this week, it’s exactly 6 months. It pretty much sucks to have no one to talk to about or rely upon my entire brain injury treatment and PTSD symptom picture, but at least I’m starting to feel like I can take that burden back on and there are still and always have been people I can talk to about bits and pieces of it. I just have to be able to knit all the bits in my mind and not overdo it like I did back in 2006. It helps that I am no longer being plagued by how much work time I’m losing to my injury. At this point, I’ve lost more than half my prime working years to it, so who gives a shit anymore?

Brain Biofeedback

Back to Semi-Regular Brain Biofeedback Post Eye Surgery

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Back to biofeedback. I was ready! Well, that was the theory. We’re easing me back in at once every other week schedule.

So far, my CNIB orientation mobility trainer has guided and walked with me to it for less and less of the way each time without me actually attending an appointment. This week he shadowed me to my appointment at the ADD Centre, and a friend met me afterward to accompany me back along the most difficult part of the route. Of course , we had coffee and a bite to eat first to thank her for giving me her time and to feed my tired brain. After the journey up and biofeedback, it was screaming: “Glucose! I need my energy refill!!”

The journey there was as expected. I made my familiar way to the meeting point with my CNIB trainer. There, he restated how it would work: I would take the subway and walk as if I was on my own, and he would follow me, close enough to keep an eye on me but far enough for me to feel as if I was alone. He would catch up at the ADD Centre, where we would debrief.

Deep breath, and off I went. It all went as expected – until I hit Yonge Street. My brain went AAIIIEEEE. Let’s stop.

Um, what the heck?

It was like the earlier days when I walked slowly, had to pause a lot, hesitated when people or cars passed me by. And the noise! It was like God had turned the volume up!!

Why are there so many dump trucks going up and down Yonge?!!!

Yeah, I know: condo building boom.

Brain overloaded, I had to sit down. Whoever decided to put benches on main streets, thank you! (And can I say, what took you decades?) I eventually realized he had usually been between me and traffic; this was the first time my field of vision encompassed all the traffic, all the movement on the busy sidewalk. Gulp.

At our debrief, he noted my difficulties. But pointed out that I’d made it. And I’d done all the right things when crossing streets.

My CNIB trainer left, and my biofeedback trainer came and got me.

Since my brain’s resources were eaten up by the journey, I’d become emotionally flat. That hasn’t happened in awhile. And because it had been three months, it took me a few seconds to remember with each screen what I was supposed to do.

We began with a three-minute assessment at CZ (top middle of head). I usually keep my eyes focused on the dancing brainwave frequency bars, specifically gamma ones, at the bottom of the screen. But that made me dizzy, so I shifted my gaze to the top of the software window. After that, came 3.5 minutes of HRV (heart rate variability). That was a shock. First my heart rate was in the 90s. 90s! I’d been away for months, and my heart was not thundering away in the 100s from lack of training. Whoa! All the training I had done was having a permanent effect?

The second shock was the heart rate curve. It was going up and down smoothly in sync with the breathing curve, with few of those jagged hills that are too common with me. I don’t recall my heart rate curve looking that smooth before …

I’ve been using the home light therapy unit every other day, according to Meditech’s instructions to assist my recovery. I’d noticed after I’d begun laser therapy years ago that my heart had begun to improve. Maybe doing the neck lights much more frequently lead to this effect???

We began training with the sailing boats in their psychedelic race courses, the screen I hate, because I was still fresh. Three minutes. It took me a bit to remember which boat was to win (the one that sails when I enhance SMR brainwaves, duh).

The next screen was the two-display one. So awesome and weird being able to see both displays at once, even if the one on my weak side is vaguer than the other.

There are so many graphs in the two-display one, it was confusing even before my surgery. My trainer told me: focus on the triplane only. OK. It took me awhile to get that triplane to fly. Apparently it was my gamma brainwaves causing it to sit there. My trainer adjusted the threshold down from 1.5 to 1.4 (it had taken years to get it up to 1.5, sigh). When I manage to generate enough gamma brainwaves to go above the threshold, the plane flies. Well, OK, it’s more than that. To get it to fly, I also have to inhibit delta-theta, keep my muscle tension down, and enhance SMR. No biggie. Ha!

We finished with 10 minutes of writing. I didn’t write as much as I usually do … I think my writing is returning … But it’s still difficult. Maybe all the NaNoWriMo talk on Twitter will remind my brain what it’s supposed to do. And tell it, it can!

Brain Health

Walking Progress Update 5 Months Post-Eye Surgery in a Life with Brain Injury

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Almost three weeks ago, we came to the next phase in my return to independence: riding the bus alone. Eep! “A round trip,” my CNIB orientation and mobility trainer replied, “you don’t have to get off — all you have to do is sit and not throw up!” Um, OK.

My CNIB (Canadian National Institute for the Blind) trainer has been steadily increasing the difficulty of my walking training. When we began, he came to my home. Then he met me a few blocks away near a main intersection. Then a couple of times in August, he met me on the other side of the main intersection, letting me see him watching me cross, then hiding from view so I felt like I was crossing alone yet did have the safety net of him keeping an eye on me.

Gradually increasing independent walking builds up my confidence in myself that I can do this and won’t get run over — I hope!

I practiced crossing on my own in between training sessions as part of my homework and gained some confidence, but he met me on the home side of the main intersection a couple of times to increase my comfort level and keep my stress levels down. Sometimes includes backtracking.

But the day he assigned ride-bus-on-own homework, we met on the other side of the main intersection; then gradually further and further away and closer to my bus stop. At that point we began practicing an easy route to my appointment.

He’s trained me to ride a short direct distance on the subway, but after a disastrous attempt at using one of the busier stations, we’re plotting routes that involve minimal subway rides. At the busy station, I had pretty much frozen from a combination of slow processing from the brain injury, anxiety from PTSD, and visual overload; noise and movements of people and trains overwhelm my senses and cognitive processing capacity. He had to take my wrist and lead me on to the train. At some point, I’m sure I’ll get retrained to tolerate it all, but right now, we need to get me back to my appointments. So whatever it takes, however longer the ride!

Anyway, as he explained: break the route into steps: don’t see the entire trip as one but as a series of steps. You can walk to the bus, ride the bus, walk to the appointment. When I have to take the subway to my destination, break that down into steps too: walk to platform, walk along platform, get on train, get off train, take my time exiting, pausing as many times as I need to to let my brain catch up to all the visual and auditory processing and multiple small decisions that have to be made (like where to sit when a man with an enormous belly hogs the priority seats).

Meanwhile, in between training sessions, I have to practice walking to get used to turns and to increasing my speed sans getting dizzy, unbalancing, or pausing. My nausea is just about gone with walking. And with my Vision Mate, I have to practice crossing semi-busy, not major intersections.

When I practice, I have to expose my weaker side to traffic to get it used to all that movement; I have to consciously keep my head straight and look dead ahead (it increases my depth perception and so throws off my balance unless I practice); consciously keep both eyes open (my operated-on eye still wants to close when my brain decides it’s getting information overload); ensure I’m aware of people/bikes/cars/dogs/cats licking themselves as I cross streets and not swan off the curb lost in all that I have to keep track of as I balance with binocular vision; remember to muffle the noise of heavy traffic with earbuds so I don’t overload my brain with sensory input; don’t get freaked out by right-turning cars trying to beat me; stay calm as the light turns red before I reach the sidewalk because I’m slower than the light cycle (traffic services admitted that traffic flow is optimized for cars not pedestrians, no matter what the politicians spout to appear progressive and accessibility-friendly); and god knows what else I have to keep track of . . . Oh yeah, keep eyes focussed on a solid unmoving object while engaging peripheral vision so that I can stay balanced and walk sans pausing. This week, on quiet streets I know well, I have begun looking ahead way, way into the far distance as well as seeing the sidewalk under my feet all at once instead of just focusing on the nearest solid, unmoving object since the line of hydro poles or sheer distance I can see now no longer mesmerizes me into stillness or nausea if I keep moving. Still, my brain gets overloaded quickly, but it’s an improvement!

I’m better at gauging my pace plus my brain is getting used to the movement of me walking and me seeing other walkers. I still hesitate or slow down when people come at me as I have to consciously predict where they’re going to go so that I can navigate them — not easy when only now can I move off the line of my path to go around things or people — or when bikes and cars pass me by because my peripheral vision still can’t handle the visual and auditory information in real time.

Dizziness is no longer my constant companion! Yay!!

Riding the bus though — with its rattling and speed — well! The dizziness returned and nausea rose up again for the first few rides. I try to keep my eyes open, but when the bus fills up or the driver whips along, I close my eyes and play my music.

I’ve begun being able to play music while walking on quieter streets. I’m gradually pushing my brain to be able to listen to music, hear my environment, and see where I’m going while looking out for idiot cyclists and impatient drivers.

One unexpected aspect of learning how to ride the bus: I had to talk to my trainer with my eyes closed to cut down the nausea from visual overload. Weird. I rely on lip reading to understand, so it was a tad harder to follow him. Plus his voice seemed disconnected in space.

It’s been a bit of an experiment to see which seat my brain orders me to. The seat right behind the driver — because that location constricts my visual field — is the best one. Less visual information to process means a happier brain.

Since it’s becoming obvious it’s going to take me freaking forever to get anywhere, and I need earbuds to muffle the noise so that my brain doesn’t get overloaded from the auditory input and my PTSD doesn’t dial up my startle reflex, I had to buy a more comfortable pair than Apple’s. (Trying to find a set that lets me activate Siri, while being comfortable required the help of a senior manager and two tries at the store since I couldn’t read and research with my vision at its current state and Junior customer service reps are more into their fave brand.)

Unfortunately, the CNIB doesn’t provide tokens for TTC practice (my trainer has a special card that lets us both ride the system when I’m with him); I don’t qualify for a CNIB-sponsored pass; no brain-injury org that I know of supplies them; and being on CPP disability but not on ODSP, I receive no public transit benefits.

So that’s where I’m at! I need chocolate and a nap!!