Concussion is Brain Injury

Archived Storify on #HealingTheBrain Conference 24 May 2017

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Storify, bought out by Adobe, shut down operations, flinging my Storify and everyone else’s into the virtual trash bin. Fortunately, the internet has helpful coders who supplement the pathetic FAQ Adobe created, and I’ve recreated the Storify here below as an archive.

Storify Screenshot Healing the Brain Conference 24 May 2017

I attended the Healing The Brain conference on Wednesday, May 24, 2017 as a brain injury survivor and live tweeted it, both to share with the world and my way of taking notes. I came away pumped with a clearer way of seeing the brain and a renewed purpose for revising my book Concussion Is Brain Injury. Doidge spoke eloquently on why neuroplasticity can be harnessed to permanently treat brain injuries and Thompson on one effective way to do so. Brain maps prove people with brain injury/concussion have real problems and are not malingering! Read the tweets for all the deets!

https://twitter.com/ShireenJ/status/867482745102110720

https://twitter.com/ShireenJ/status/867450250092568576

https://twitter.com/ShireenJ/status/867441316992569345

https://twitter.com/ShireenJ/status/867414767882862592

https://twitter.com/ShireenJ/status/867414215727906816

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.

News

Saying Goodbye to @MyABI_byRH

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@MyABI_byRH

I started this a few years ago to open up about living with a brain injury. The brain and emotions something people are scared to talk about” – @MyABI_byRH 18 June 2016

I hope by being open and honest other people can feel less alone and be comfortable that it’s ok to talk.” – @MyABI_byRH 18 June 2016

At 0700 hours BT, July 21, 2016, a fellow traveller on the brain injury journey died from a fall caused by a seizure.

Ppl not on social media talk about relationships on here not being real. @MyABI_byRH died this morn; it feels very real to me. #braininjury” – me on Twitter

I don’t remember how I, a Canadian, first met in the virtual world @MyABI_byRH aka Richard, a young Scotsman. This is why Search was invented: to help us remember that first contact, that first chat.

Memory like a misty ribbon emerges as I search back in time for our first exchange.

Back in the day, @BrainworksRehab was active on Twitter. Weekly, they thanked various tweeps for RTs of their tweets. I decided one day to look for people to follow not just react to those who followed me; so I used to check out the tweeps Brainworks Rehab thanked. I looked for anyone with a brain injury whose personality and thoughts came through their feed, whose tweets were worth reading. That’s how I found @HammondsHead, what Richard used to call himself on Twitter. Seven days later I responded to one of his tweets about getting on with kids better than adults because I so related to that. Boy, did I relate!

I followed him. And he followed back.

At some point, he changed his Twitter handle to @MyABI_byRH – that stands for My Acquired Brain Injury by Richard Hammond

A year later in 2013, his openness about his brain injury, his desire to get better, and him trying mightily yet not quite knowing how to overcome obstacles, sparked in me a desire to create a chat community for people with brain injury similar to Twitter chats I saw for people with diabetes. Because of a recent experiment in enhancing gamma brainwaves, I had become loads better and so felt I could do this.

I created #ABIchat, and Richard participated. But even when he couldn’t, his upbeat vibe for it encouraged me.

Unfortunately, he suffered another head injury only a few months after we got #ABIchat off the ground, and I did not have the energy nor the ability to keep it up (a typical brain injury problem, which I really wish would go away).

I’ve been made aware of this account by my sons. My son Richard uses this to post about his experiences as a (cont) http://tl.gd/n_1s0arc4” – 6 Feb 2014

I had to drop #ABIchat.

But I kept following Richard, although for a long while, his brother Scott or his Mum tweeted on his behalf after his second head injury – keeping up his tweets about his brain injury journey was so important to him that his family tweeted for him though they were not as into Twitter as Richard was. It was my first glimpse at how unconditionally his family rallied round him. I honestly didn’t expect to see him recover to his former baseline. But he did! And I believe it was the daily, active, loving support of his family that made such a diff.

It’s something too many of us don’t have. And I believe it gave him the bedrock he needed to keep tweeting and persevering after such a devastating setback.

It was a delight to see him sneak on to Twitter and begin to write his own tweets again when he was supposed to be resting. And it was a bigger delight to see his written language skills return and to see his thought processes begin to sharpen and mature.


But though the re-injury set him back, Richard never lost his genuine positivity. He invented his hashtag #adaptandovercome not as some sort of feel-good motto I see too often on Twitter but as a natural outflow of the way he viewed himself in the world. It wasn’t just a phrase, it reflected his thoughts, his essence of innocence, his determination and drive to improve, his desire to nurture and his compassion for others suffering from brain injury – well, anyone really, including remarkably, people who misused his trust. His compassionate-forgiving spirit flowed through his tweets to all of us who read them.

This past Spring, he unexpectedly became a father. Though scared, he didn’t hesitate to be there in every way for his daughter, even before she was born. He loved her like crazy; in only a few weeks, she changed his focus. She became, for him, the reason to redouble his efforts to #adaptandovercome.

I have such a fantastic life right now, and such a beautiful daughter. Luckiest man on earth.” – @MyABI_byRH 20 July 2016

Never thought I could love someone so much. She’s my reason for being now. My reason for pushing myself. https://t.co/3swIeGEkCg” – @MyABI_byRH 19 July 2016

Our last exchange was about his daughter, naturally.

There are few like Richard on Twitter or in “real life,” and his spirit is what I will miss the most.

Brain Health

Growing Social Media Divide Leads to Bad Advice

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I’m not often told it might be good to avoid Twitter or to give it a break, but when I am — and when others with brain injury are — it’s by people not on Twitter or who have a lurking-only account. And who don’t know or understand how I use it.

They’re unhelpful.

They’re unhelpful because they don’t understand how Twitter works. And so they advise the blunt instrument of total avoidance instead of helping me or anyone with brain injury avoid the “negative” while allowing us to still play in the fun social sandbox.

One reason us people with brain injury are told to stop is because of “oversharing.” This is part of a larger discussion about our cultural shift to emoting more in public, to creating closer ties even with people we’ve never met in real life, to the trolls among us and how to protect ourselves from them. But the oversharing I’ve seen people with brain injury are criticized for is nothing compared to what some non-brain injury people do. I think the advice to us in this case smacks a bit of the patronizing attitude so systemic towards people with brain injury. Talking out consequences but leaving it up to the individual to decide if they can handle it is way more respectful than telling them stupid stuff like, “what will your daughter think?” Maybe their child will realize their parent is a suffering human and learn some compassion.

Another reason given to avoid it is when we’re bothered by tweets from a certain individual. In that case mute block report that individual is the better option, and I’ve written about that before.

Another reason can be overload. This is a valid concern. We people with brain injury are prone to sensory and informational overload. Couple that with impaired ability to stop, and you have massive energy drain. Years and years ago, I began to turn off the computer and go offline Saturday night and not turn anything back on until sometime on Monday (very occasionally Tuesday). That broke any addictive cycle that had been building up over the week. It also gave me the rest I needed.

The iPhone has complicated things for me because it has apps on it that I find restful or distracting. It is a computer but not a computer. It’s my second brain; it helps me function and relax. But the iPhone has the ability to connect to the online world through its data connection, and with the phone plan I have, I don’t worry about data costs. Deadly!

Worse, brain injury tends to kibosh self-control and habits are hard to keep.

But I’ve held this habit for so long that I don’t forget it, like all my other ones. And if I do sneak online, this habit keeps me from not participating. One complicating factor is I do need a data connection to message people — messaging is the new phone calling and, frankly, a lot easier to keep in touch with others no matter one’s schedule. But I’m not exactly a social butterfly anyway.

And sometimes no matter who you are, just like we all need a vacation from work or from family, having an annual or every-four-months week-or-two-week-long vacation from Twitter or Facebook is a good way to recharge the social batteries.

But for day to day, instead of wholesale avoidance, the health care provider should be suggesting:

  • Focus on your Twitter list of close friends.
  • Just look at your hobby list.
  • Muffle the political tweets that are sending you ballistic until you’re ready to get back into the game.
  • Follow your favourite Twitter chat and then turn Twitter off till the morning.

But they cannot unless they use social media. Just another reason why the divide is growing and causing friction between the patients on social media and the health care providers and friends and family members who are not — to the detriment of the patient’s social and emotional health.

Books

NaNoWriMo: Chapter 4 on Twitter

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Chapter 4 sees Chantie take BobbyFlax up on his offer to help her learn to navigate the Twittersphere.



Books

NaNoWriMo: Chapter 3 on Twitter

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A little bit of a hiccup in the Twitter timeline. But it’s early days, and so I was able to redo @BobbyFlax’s tweets. Here then is the Twitter portion of Chapter 3 of my #nanowrimo novel in progress, Chantie:



Books

NaNoWriMo 2014: Chapter 2 on Twitter

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So far, my Twitter experiment is working out. I write my chapter; go rest, eat, drink; think over whether I should tweet out a few excerpts through my own account; decide yeah, extra work but good for the readers; type out my tweets and my characters tweets into a separate document; think them over: did I miss any necessary detail? Am I being too obtuse (I’ve been accused of that!)? And most importantly: is the character count including hashtags within the 140 limit? Then I go to it and hope for the best.

So here, in case you missed them or are unable to follow me and my growing cadre of characters on Twitter, are today’s tweets of my twovel:



Books

NaNoWriMo 2014 Begins . . . on Twitter

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I wasn’t sure I was going to be able to participate in National Novel Writing Month, which I have since 2009, this year. The thought was disturbing. But my muse came to the rescue. It said: locate a novel on Twitter. Make it a mystery. You figure out the rest. Well, I did. And though I waffled over my initial idea of playing it out on Twitter — should I or shouldn’t I? — and though I began by thinking the entire novel would take place on Twitter and ended by realizing it couldn’t — by the time I began writing Chantie’s story just after midnight on November 1st, I knew I would go ahead.

List of characters, revealed to date:

NaNoWriMo Character Twitter Avatars
NaNoWriMo Character Twitter Avatars

So here’s the deal. [Updated 6 November 2014 with questions for me, below.]

The novel takes place on Twitter, which means the characters will be tweeting at each other, which means they need their own accounts, which means, well, hey you can watch them tweet on Twitter. The only issue is that the novel includes some prose — how much I’ll find out as I write it. That prose will, for the most part, not appear on Twitter. That could make it a little incomprehensible for readers or, I’m hoping, make it more mysterious and set up conversations about what’s happening “behind the scenes.” This idea will certainly make novel writing more challenging for me. I don’t know how Charles Dickens ever got the nerve to serialize his novels as he wrote them, but I’ve always admired him and am now following in his footsteps. Eek!

I wrote the first draft of the final chapter yesterday. That will remain locked up away from prying eyes. Today, I wrote the first chapter of my novel, tentatively titled Chantie. I’m not a big fan of my title; it’ll do though. Anyway, chapter one introduces my main character Chantie Trembel, and I opened it up on Twitter with a few critical tweets giving context:



Questions and Answers
If you have any questions, tweet me!

I was debating about the timeline. I write the novel in 30 days, so should it take place over 30 days? Sort of. Because of the writing process, some of the tweets won’t be in real time. But all the Twitter chats will be done in the time they’re supposed to happen over. Where time is a factor, I will stick as closely as possible to real time.

 

I was thinking of having Bobby follow some of my tweeps, then I began to wonder if he did more than follow, if he interacted with them, how would that work in a published novel with issues of copyright and all? I’d ask before I did that and before I had his character follow anyone as well. But it could be fun!

All tweets by my characters are copyright protected under my name as per Twitter’s terms of service. “5. Your Rights You retain your rights to any Content you submit, post or display on or through the Services.”

Brain Biofeedback

Reading a Sign While tDCS Stimulating Wernicke’s

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ShireenJ (@ShireenJ)
2014-10-22, 8:59 AM
@ADDCentre -> MT @mattgallowaycbc: great sign about distracted driving. RT @BrentToderian: Clever. Spread the word. pic.twitter.com/OKVyYrxWf7
IMG_1358.JPG

When that tweet I MT’d came into view on my Twitter feed, it caught my attention, not for its rather obvious message, I mean who’s dumb enough to think texting and driving is a good idea, other than maybe, I guess, people who want what they want when they want it now– Anyway, where was I? Oh yeah, it caught my attention for this reason:

ShireenJ (@ShireenJ)
2014-10-22, 9:00 AM
@ADDCentre I remember practicing as a kid reading signs like that w interlaced narratives till I got good at it. Not any more! Sigh.

After I tweeted that out, I forgot all about it until the ADD Centre tweeted back and said why don’t we add that in to my session? Oh hey, I like!

ADD Centre (@ADDCentre)
2014-10-24, 9:04 AM
@ShireenJ let’s introduce it during training sessions! Are you still activating wernickes?

This week we did. My trainer set up the tDCS — the anode sponge over my Wernicke’s Area, just above and behind my left ear, the ground sponge on my right shoulder, setting it to 2mA (tiny, tiny amount of electrical current) — and I began to read the sign on my iPhone. Oh my.

That was hard.

And dizzying.

I began by trying to read the message in black type. Then after, I don’t know, three or so stuttering tries, I switched to reading the message in blue type. That was harder.

I had trouble following both message lines separately and comprehending them separately, even though I knew what the gist of the whole sign was. After a few reads of the blue message until I was able to follow it from beginning to end, I went back to the one in black. I alternated back and forth like that a few times.

Black fonts are easier to read than blue ones.

At times, my trainer would talk to me at the same time as I was reading — to add on an extra layer of distraction and to get the electrical stimulation to zip along both reading and listening brain networks. Oh my. Just recalling that makes me feel slightly nauseated.

Even though I was only trying to read the messages separately and not even attempting to read them simultaneously, I was getting too dizzy. So after about 3 or 4 minutes, I stopped. My trainer and I chatted for the rest of the 12 minutes of stimulation.

I told her that when I practiced as a kid reading alternating text like that simultaneously, the type was all in black. Harder, she noted. Yup. She was wondering where you could find other interlaced or alternating texts. Good question. I’d wondered too, but after some futile Googling, gotta admit I don’t know. I don’t know if there’s an official jargon name for intertwined text like that or not. If there is and if any reader of this post knows it or how to find interwoven text, please leave a comment letting me know. Thanks!

I will be trying this again. For me, practicing with familiar text fits in with my rehab’s advice on how to improve my reading better than with trying to find novel signs for each session. The OT at Toronto Rehabilitation Institute told me to practice reading text I already knew. When you’re working on higher cognitive functions to regrow and cement those networks, that sounds like sane advice to me for text like this as well.