Brain Power

Reading Re-Evaluation Results After 81 Hours Visualizing and Verbalizing Instruction with Lindamood-Bell

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Today was re-evaluation results day! It seems like another lifetime ago yet only yesterday that I received my initial reading assessment results from the Minnesota Lindamood-Bell centre. I’ve completed eighty-one hours of visualizing and verbalizing instruction with Lindamood-Bell’s Double Bay, Australia centre (which because of the time zone difference allowed me to do it two hours per night, five nights per week). I had my re-evaluation this past Sunday, Monday, and Tuesday nights. The time was broken up because of my fatigue — I don’t have a lot of stamina — and because they wanted to use new-to-me stories in addition to the same ones I had been tested on the first time around for the reading comprehension section.

Like before, all the results were normed to my age and gender. And those tests that haven’t been normed in awhile, were used for diagnostic purposes.

Re-Evaluation Results

What I wrote about my June results is in italics; my re-evaluation results underneath each point:

  1. My reading rate is too slow. I’m in the 16th percentile. That means 84 percent of women my age read faster than me.
    1. My reading rate has not increased. I remain in the 16th percentile.
  2. My foundations are solid. These are the ability to hear phonemes, the sound parts that make up words. The ability to recognize and pronounce high-frequency words. The ability to figure out an unknown word within the context of known words.
    1. My foundations remain solid. I can still sound out multi-syllabic words, as they’ve heard and seen during my sessions while reading complex material like philosophy of mind.
    2. Although a couple of my scores dropped in this category, they remained in the above grade 12 level. The word attack — decoding nonsense words, which is about sounding words out — also has only 26 possible points. So going from 26 out of 26 last time to missing 2 of the 26 this time equals a big drop in percentile; if there had been more points, the drop would not have been as large. The symbol to sound one (things like sound out “ou” or “oa”), I like to think dropped because Canadian accent versus Australian accent. Heh. But to be honest, I didn’t put a lot of effort into that one test because in the real world, I can pronounce words okay. It’s my reading comprehension, reading rate, and amount of text I can read that are the issue.
  3. I rely on my vast knowledge bank and familiarity with language to prop up my comprehension. When I cannot see a word but only hear it and I have to pick out an illustration that best represents the word, I cannot rely on my ability to decode a word from its roots to figure out what it means. And so I don’t do so well. Based on results from standard vocabulary tests, I drop about ten percentile points, maybe a bit more, when given the same vocabulary test when heard, not seen, and using pictures instead of words to “define” the word spoken to me.
    1. Well! I’m so chuffed. My Peabody Picture Vocabulary Test result shot up.
    2. There was actually a greater than 10-point discrepancy between a regular vocabulary test and my initial Picture Vocabulary test result.
    3. I went from 82nd percentile to 95th! That’s more like it!
    4. This test measures receptive vocabulary, that is, vocabulary that’s spoken to me. The improvement reflected my improved ability to image words.
  4. My accuracy in reading words is very high.
    1. This remained the same.
  5. Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
    1. This has not changed.
    2. My reading rate remains in the 16th percentile.
    3. My accuracy remains very high in the 95th percentile.
    4. Fluency remains in the 63rd percentile. The only way for me to increase it is to read faster.
  6. When I can rely on my knowledge bank and ability to decode words, my comprehension is good. When I read new or lengthy material even text at grade six level, where I can’t rely on my knowledge of content and language, my comprehension drops a lot.
  7. Concept imagery is the ability to conceive a word, sentence, or idea as a whole in a kind of picture. I don’t have it. It’s sort of, uh, depressing . . . more than that . . . grievous and devastating to see one rated as having a mental age of 14.5 or 13.5 years in these tests after eighteen years of rehab, active treatments, and passive home treatments. On the other hand, they confirm I’m not imagining my reading problems. I have real difficulty despite the fact that I’m “articulate” and can read words no problem.

In relation to points 6 and 7: big change! Happy Snoopy dance!!

Concept Imagery

Lindamood-Bell’s visualizing and verbalizing instruction is aimed at improving one’s ability to conceive a word, sentence, or idea as a whole in image form. Being able to conceive a word or sentence or paragraph or idea as an image both improves comprehension and recall. My re-evaluation objectively measured whether I’d learnt how to do this and improved in these two areas. In the words of the Double Bay Associate Director, I “knocked it out of the park.”

Sketch of visualizing and verbalizing instructionAs I’ve detailed in previous posts, Lindamood-Bell Australia began teaching me how to visualize with a single word. We moved on pretty quickly to a single sentence. Once I learnt what is meant by picturing a word then picturing a sentence, I had to learn how to verbalize it. I didn’t really understand “visualizing and verbalizing” until about August even though I was doing it.

It isn’t enough to create a mental image in your mind, that is visualize an entire sentence then a whole paragraph then an entire page; you need to be able to describe that image and also summarize the sentence or paragraph or page in words  clearly — that is, verbalize it to your clinician.

I didn’t get to the chapters/articles level as shown in this diagram by the Minnesota Director. But I did reach the Page level and soon after during the Application stage, the Page by Page level.

So what did that mean?

The Big Result: Reading Comprehension and Recall

In the Gray Oral Reading Test, Form A, which is one of the tests used for diagnostic purposes, I improved hugely. This test measures straight recall. You read a paragraph. They take the text away, and you have to answer four open-ended questions posed to you by the assessor. I had inconsistent and kind of depressing results the first time. This time — 100% all around, well, except for one pesky grade level. But I improved there too! At the grade 6 level, I improved from 75% to 100. Eighth grade I remained at 100%. Tenth grade, I improved from 88% to 100%. Grade 12 I went from 50% to 88%. College level, I went from 75% to 100%. And adult level I remained at 100%.

Gray Oral Reading Test, Form A Pre and Re-evaluation results

I’d noticed my recall had shot up. I was able to not only remember but have confidence in what I was remembering because it felt solid in my memory banks. I remembered what I read — whether pages from the novel The Lions of Al-Rassan or sections in Philosophy of Mind text — because I could see the images in my head. For the first time since my brain injury, I was also able to build up the big picture of what I was reading — this requires recall. If you can’t recall what you read previously, you can’t build up the big picture. But you also need comprehension.

The Gray Oral Reading Tests 4, Forms A/B comprise stories you read out loud then they take the story away and put in front of you five multiple-choice questions. You read along with them as they read out loud the first question and its four possible answers. After you choose A, B, C, or D, they read the next question, and so on. This time I recognized within those questions, concepts such as main idea, higher-order thinking questions, questions about feeling and expression, things I still struggle with but are way, way, WAY, better than back in June. They saw I was stressing over reading stories I recognized from my original assessment, wanting to do better, still not happy at how back in June I’d struggled over answering some of the multiple-choice questions. I was definitely not struggling as much. But was that a practice effect or comprehension? It felt like comprehension to me. They decided to test me again using new-to-me stories without telling me why they were giving me additional stories to read; they scored me on those stories. I was less stressed as I read the new stories, the questions, the multiple choices, and answered the questions. I actually scored better on the new ones than on the ones I knew from the June assessment! That’s what stress does to you!!

As I mentioned earlier, my reading Rate results from this test remained abysmally slow: 16th percentile. Accuracy remained at 95th percentile. Fluency remained at 63rd percentile. But — drum roll –my Comprehension score went from 63rd percentile to 84th! This is actually the top percentile for adults. The best part: I scored 70 out of 70. *Pumping fists*

Gray Oral Reading Tests 4, Forms A/B

They don’t test for volume of language, that is, how much text I can read in a sitting. But we know experientially that I’ve been increasing week after week the volume I’m reading. We began with a sentence. I’m now up to four pages, reading them Page by Page. My next goal is a chapter. I don’t know how I’ll get there, though. I’ll be working on goals next week.

Main Idea

Reading rate is the same. Volume and Comprehension are up. My reading rate hasn’t changed, but I’m understanding much better what I read and I’m reading much more text with comprehension and good recall.

It is possible to restore reading comprehension after brain injury! No strategies needed anymore!! (Well, except for covering off the text . . . for now.)

I haven’t tested my long-term recall in the real world. But every time I summarize what I’ve read so far in the novel, starting from the Prologue, I remember it. The Philosophy of Mind is not as solid with just me reading it, probably because it takes more mental energy and effort. I fatigue quicker with it; fatigue plus huge effort equals not being as disciplined in creating images. I also am not good at creating higher-order thinking questions (HOTs). I’m going to go back to my course modules and use those questions as my HOTs. But I think this day calls for cake!!

Brain Health

Reading after Brain Injury: Making the Decision to Try Restoring It Again

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Why creep when feel impulse to soarSo after stressing and dithering and talking and talking with my health care team, I’ve taken the plunge and will soon restart my efforts to take back my reading from my brain injury.I wrote previously about a recent comprehensive reading assessment with Lindamood-Bell, a US company devoted to training/restoring reading and math to students and adults, and I also wrote about my results. They confirmed my experience with trying to read long-form materials or even material as short as tweets when I’m tired. I was introduced to the concepts of dual coding theory and reading comprehension through concept imagery. And I learnt more and more about how they would restore my reading comprehension using their Visualizing and Verbalizing Program that they recommended. To be honest, I’m still absorbing it all. But I cannot wait to start. I need my reading back in time for NaNoWriMo; so in my usual brain-injured way, I’ll just roll with it while my brain learns, forgets, remembers some bits, processes, absorbs more info, struggles to integrate, comprehends a bit more, and finally catches up with my actions.After discussing it with my neurodoc*, I’ve decided to contract for 80 hours. It’s the minimum required. Even though 120 hours was Lindamood-Bell’s recommendation to regain my ability to read philosophy textbooks and comes with a 5% discount, I can’t afford it. Or rather the financial pressure of having a large upfront cost would stress out my brain so much, it would probably fight against the instruction. I can always extend it if I need more than 80 hours, but I’m hoping I won’t have to. (Heck, I can’t even afford 80 hours, don’t know where else I can get the money from once the line of credit runs out, tell myself that’s what credit cards are for, and my teeth grit at the thought of carrying a balance on them. But the soul cost of not pursuing this opportunity to get back a core part of who I am is worse than the financial cost, even though organizing it and managing preparation for starting Visualizing and Verbalizing has shot up my busy brain — ruminations that come with brain injury like a hamster shot full of steroids racing on his wheel.)I’m not going to rely just on hope though to make those 80 hours behave like 120. I’m going to use my audiovisual entrainment device to perk up my brain and enhance relaxed, focused attention so that I can respond as optimally as I can to the instruction. I’m also working with the ADD Centre to see if my brain biofeedback protocols can be tweaked to facilitate the neuronal regrowth we want. We’ll be keeping the gamma brainwave biofeedback for sure since it supports my whole brain and “grounds me.”My neurodoc and I had a brief, candid discussion about my coffee purchases. If I cut down on the treats, I can afford the increased cost of upgrading to faster broadband. My current basic broadband is too slow for online instruction with Lindamood-Bell, especially as I’ll be working with their Australia centre. Wow, geographic distance does make a diff. What was OK during assessment with their Minnesota centre was not so hot with the Australia centre with its many moments of video stuttering and audio distortions. But it did the job of discussing my options and getting all my questions answered at once instead of the painfully frustrating slowness via email, with the 14-hour time zone difference slowing it even further.With faster broadband comes another cost: a VDSL modem. Really, you think all you have to take into account is the hourly instruction rate; the next thing you know, all sorts of costs are raising their hands, going count me in, too! Maybe somehow I’ll pay it all off in a couple or four years. I’ve been down this road before. For the last couple of years, it’s been nice not carrying debt in order to pay for my medical expenses in universal-health-care Canada. But I guess that vacation is over. Sigh. By the way, others with brain injury who require medical care not covered by their provincial health care pay for it by credit card. Imagine being on ODSP, living in social housing, and having to pay hundreds of dollars or over a thousand per month for medical expenses‽ Naturally, credit cards get maxed out. Canada’s universal health care is pathetic and impoverishes desperate people even more than being unable to work does. But I digress. If all goes well, I’ll be starting July 8th. Yes, a Sunday. The only time I’m reliably available five days in a row for two hours per day is at night. Lindamood-Bell centres close at 5:00pm in the summer (North America), so that’s why I’m doing it with Australia (winter hours). Their office hours coincide with my night hours. Try to wrap your head around not only a different time but a different date! The contract shows me starting July 9th, their Monday, while for me it’s July 8th! Needless to say, our emails have been full of “your time” and “my time”s!Now that everything is almost in place to start — fingers crossed no more hiccups — I’m counting down the days. But I should probably rest — and rest some more while I can.


*My neurodoc and I have been working things out for about a month now since I fired him and then discovered my brain injury grief, including for losing my reading and the long soul-destroying struggle to get it back, was more than I could handle on my own. However, I wasn’t about to continue the way we had been with him pushing his wrong goals on to me. I figured out a paradigm shift to force him to pursue my goals and only my goals. Sometimes doctors don’t know best. Since he got the message, things have been slowly improving. It helps that we’re learning that he has to explain things better not just assume I’m following his miles-a-minute thinking. He’s also realizing that given my severe abandonment issues, he needs to be more obviously supportive. I’m crossing my fingers, but I think I can say we’ve turned the corner. Trying to find good, appropriate psychiatric or psychological care for managing brain injury life is not easy. Ontario doesn’t cover psychologists for people with brain injury. And too many psychiatrists, who are covered since they’re physicians, treat it with a medication-only approach. Wholly inappropriate and, I might say, injurious. So I appreciate mine learning to do better.

Brain Power

The Collective Toronto Yawn for Canada’s Brain Injury Awareness Month

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Love bot at CHIRS, a place for people with head injuryDiversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.

During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.

All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.

Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.

Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.

And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.

So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?

No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?

Brain Power

The Collective Toronto Yawn for Canada’s Brain Injury Awareness Month

Posted on

Love bot at CHIRS, a place for people with head injuryDiversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.

During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.

All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.

Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.

Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.

And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.

So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?

No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?

Brain Power

Reading Evaluation Results for Comprehension Issues After Concussion

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I wrote last time about my reading evaluation. This post is on my results. When you have a brain injury and rehab tells you that you can’t read anymore, you assume that they’ve done a thorough assessment and analysis of your reading cognition.

You’d assume wrong.

Reaction

In 2005, five years after I was told I wasn’t reading the ubiquitous mass paperback in my hand, I had a qEEG done, which told me the neurophysiological basis for why I had so much difficulty reading. The first week of June 2018, I underwent three hours of testing over two days that assessed my auditory, visual, and language foundations of reading; my fluency; my comprehension; and my concept imagery.

Reading illustration of how we read

Huh? Yeah, I’m still learning these too. They match with my experience, but they introduce concepts that I haven’t heard of before or only knew about from a different perspective. I learnt more about where my reading difficulties lie.

My very first thought was: why did I not have these tests done during rehab in 2000? Why did the medical system not assess all my cognitions with full, appropriate qEEGs and these kinds of reading, writing, and math tests?

If I had been properly assessed, not just given a neuropsychological test people with high intelligence can ace, injury or no injury, I would have had a complete picture and been given a precise scientific and medical explanation of why I couldn’t read anymore, not just a general statement of you can’t read.

I also don’t even know how to process the fact that when I asked my neuropsychiatrist for help with reading that the reading expert he consulted pointed to the aphasia website and didn’t tell him that I should have all these tests done, the ones I’ve just undergone. It’s been bad enough I had to wait twelve years for a reading “expert” advice, but to have not known about these tests for a further six years because the medical and “reading research” community are so intellectually lazy is beyond egregious. I’m pissed. And upset. And filled with hope that finally I’ll get my book time back.

I’m still processing my results.

Results

It’s difficult to explain what one is only just starting to grasp. Lindamood-Bell who conducted the evaluation, normed all results to my age and gender.

  1. My reading rate is too slow. I’m in the 16th percentile. That means 84 percent of women my age read faster than me. I believe this rate is about double what it was in 2001. Wow! Some progress!! sarcasm
  2. My foundations are solid. These are the ability to hear phonemes, the sound parts that make up words. The ability to recognize and pronounce high-frequency words. The ability to figure out an unknown word within the context of known words.
  3. I rely on my vast knowledge bank and familiarity with language to prop up my comprehension. When I cannot see a word but only hear it and I have to pick out an illustration that best represents the word, I cannot rely on my ability to decode a word from its roots to figure out what it means. And so I don’t do so well. Based on results from standard vocabulary tests, I drop about ten percentile points, maybe a bit more, when given the same vocabulary test when heard, not seen, and using pictures instead of words to “define” the word spoken to me.
  4. My accuracy in reading words is very high.
  5. Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
  6. When I can rely on my knowledge bank and ability to decode words, my comprehension is good. When I read new or lengthy material even text at grade six level, where I can’t rely on my knowledge of content and language, my comprehension drops a lot.
  7. Concept imagery is the ability to conceive a word, sentence, or idea as a whole in a kind of picture. I don’t have it. It’s sort of, uh, depressing . . . more than that . . . grievous and devastating to see one rated as having a mental age of 14.5 or 13.5 years in these tests after eighteen years of rehab, active treatments, and passive home treatments. On the other hand, they confirm I’m not imagining my reading problems. I have real difficulty despite the fact that I’m “articulate” and can read words no problem.

As I understand how Lindamood-Bell conceives of reading, reading comprises decoding and comprehension. Decoding is done in the reading foundations aspect of reading. There are three parts to reading foundation: auditory, visual, and language.

“. . . thinking that reading is decoding a word but reading is being able to comprehend.” Nanci Bell

Auditory

The ability to hear phonemes, the sound parts that make up words.

Auditory processing illustration

Visual

The ability to recognize and pronounce high-frequency words. The ability to spell high-frequency words, that is, words that are used often in everyday reading. And the ability to image symbols, that is, letters or letter combinations.

Visual processing illustration

Language

Vocabulary. And the ability to figure out an unknown word within the context of known words.

Language processing illustration

Encompassing these three foundations of reading is comprehension.

“If there’s weak comprehension, … frequently teachers and parents don’t really know perhaps there’s weak comprehension. . . . If it’s really severe could be labelled hyperlexia there’s a gap between ability to read words and ability to comprehend. Or if it’s weak enough, it can fall into the label of autism.” Nanci Bell

Comprehension

Comprehension illustration

Lindamood-Bell uses Dual Coding Theory to explain how what we decode while reading — either text or listening to the words — is turned into comprehension by our brains. In dual coding theory, the symbols — words on text or words heard by the ears — the auditory, visual, and language parts of reading — are turned into non-verbal concepts that we can picture. A painting represents a thousand words and all. (Wikipedia notes it was a Canadian who posited this theory. Why is it then Americans, not the Canadian rehab centre I went to, that knows about and uses this theory to rehab reading?!!!!)

Dual coding theory illustration

As part of that theory, they posit that concept imagery is how we understand what we’re reading. When we read or listen, we create a picture in our mind of what we’re seeing or hearing.

Concept imagery illustration

Nanci Bell, co-founder of Lindamood-Bell, explains the comprehension and concept imagery side of reading in this video below. Note that what we often think of as reading issues, eg, dyslexia, occurs on the decoding side of the ledger. The comprehension side isn’t usually talked about. It usually doesn’t even have labels like the decoding side does. I personally don’t think labels are always useful, but in our current milieu where everything is labelled, a label gives credibility. I think that’s why when people with brain injury say they have trouble reading yet can read words and use some or a lot of their vocabulary, health care providers, family, and friends don’t believe us. But as Bell says, vocabulary is not comprehension.

Now comes the tough part.

Restoring Book Reading

Lindamood-Bell said: “we can restore your book reading.”

Pause.

“What’s so tough about that, Shireen?” you might ask.

This is like where I describe in my book how I met clinicians in 2005 who knew what I wanted — to heal my brain — and said they would help me do that and could. It’s so hard to describe in a blog post what it’s like to be neglected medically, your angst and desires dismissed, and told to accept diminished functionality for years and years and then be told you can be helped significantly — and then you find out the help was available at the time of your injury; it’s just that the people entrusted with your care didn’t know about it or “believe” in it and your loved ones never searched for you.

Once again, I’m being told the unbelievable, that what I’ve wanted for years is in fact doable. It feels untrue. I asked:

“When you say I’ll be able to read a book like I used to (before my brain injury), do you mean a book at the level of an Agatha Christie? A PD James? Neuroscience article? And/or philosophy of mind textbook?”

They answered:

“In creating your recommendations for instruction, the goal I had in mind was your ability to read and process literature at the level of your potential, and at the level that would support research and continued learning for your writing. Especially with the full recommendation of 120 hours, I picture your ability to access all of the examples you provided in your original question. Our instruction may start at a lower level, but over the daily and weekly sessions, you’ll see an increase in the amount of language (text) you are processing as well as the complexity.”

Basically it would look like an ascending ladder of difficulty.

Visualizing and verbalizing program illustration

They continued: “Since our vision for instruction will include increasing the volume of information you are processing, our goal is to decrease your fatigue, by systematically and consistently reinforcing independence with visualization for increasing lengths of language. Just like any foundational skill (ex: learning a new language, learning a new instrument) practice and continuous exercising of the skill, makes it more automatic. Instruction will stimulate and strengthen this process for you, but practice outside of sessions and beyond instruction, will also be key. You may still need to take breaks, but I anticipate the length of breaks and the frequency of breaks will diminish as you, on a daily basis, start reteaching your brain this visualization process.”

I’ve consulted with some of my health care team. They believe I will benefit, that I need this hope. There is some skepticism that reading books like I used to is achievable; but no matter what, given all the brain work I’ve done, how my brain is now used to training, and how I do the work given me, I will benefit. My reading will improve. Dr. Lynda Thompson at the ADD Centre, who referred me for evaluation, was impressed with the time they gave me answering my questions and liked that they would show the objective learning curve not rely on subjective feelings and measure the gains.

I’m not sure how I’d be able to handle it if I didn’t achieve reading like I used to, though. That’s why I’ll need all the support I can get from my neurodoc. We’re patching things up; I’ve enforced pursuing my goals, and only my goals.

The normal intensity of instruction is four hours per day, Monday to Friday, for four to six weeks. Because of my fatigue, we’ll cut that down to two hours per day, five days a week, for eight to twelve weeks. It seems that I would need the whole three months and would have to practice daily on top of instruction as well as continue daily practice after instruction ends. Whew. That’s a heck of a commitment to work! I worried that the whole thing would be a moot point if I didn’t find a way to pay for it. I need help since the cost is way, way beyond my means. So I’m borrowing. What else is new.

OHIP really should be paying for this. This is what cognitive therapy ought to encompass when acquired brain injury clinics talk about what they do as cognitive therapy. It should also include brain biofeedback and audiovisual entrainment and long-term talk therapy. But first we need to get the medical system to assess cognitive functioning and brain injury properly. And to get anyone working with people with brain injury to take their reading problems seriously. We live in a knowledge economy after all — if we can’t read volumes of information, we can’t work.

Concept imagery underlies comprehension. Comprehension not based on having an adequate vocabulary nor ability to hear phonemes. Nanci Bell: “What they struggle with is the concept or the whole. And if you don’t have the whole, you can’t do higher order thinking skills such as main idea.” They call it in the U.K. aphantasia, the inability to visualize. Higher order thinking: From what you pictured— not what you think — what comes next in this story?

Lindamood-Bell trains to the client’s potential not what falls into the average range. This is significant. Brain injury rehab is about working to the average of what they’ve done since the 20th century, not for what is needed for independence, satisfying functionality, and most importantly, the person’s potential.

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Sketches courtesy of Dana Kernik-Theisen, Center Director, Lindamood-Bell Learning Processes, Edina, Minnesota, who generously gave of her time to explain my results, recommendations, and reading theories.

News

June is Brain Injury Awareness Month

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BIST Brain injury awareness month crowd in 2010June is brain injury awareness month in Canada. Other nations use other months to raise awareness about brain injury. But what does raising awareness mean? Do we simply want people to hear about it over their morning coffee, then go on about their lives, oblivious to the suffering all around them? Or do we want to change the lives of people with brain injury for the better so that they can actually heal from their injuries, live within society, regain their dreams and families?

Back in 1980, a young man who had survived osteogenic sarcoma declared he would run across Canada to raise awareness for cancer. Back then cancer was seen as fatal, a shameful disease that people didn’t talk about much or they whispered sympathies behind closed doors for anyone caught with having grown a tumour. Children with cancer would, of course, die tragically, as everyone knew. A cure was not possible. Talking about the disease and advances in treatment was restricted to those with it or within medical circles. And then Terry Fox dipped his artificial right leg in the cold Atlantic waters off of Newfoundland, Canada and set off in his quintessential one-good-leg, one-prosthetic-leg hop to run a marathon-a-day across the second-largest country in the world.

Not many noticed his leg dip. But as he ran day after day on the highways of Canada, people began to pay attention. There was no social media, so it was word of mouth and local papers (which still existed back then) that spread the news of Fox’s Marathon of Hope.

Hope . . .

And the one-legged hop of a young man braving to put a public face on a dread disease.

Those are what caught the media’s attention so that by the time he hit Toronto, Canada’s largest city, so many people knew about his mission that crowds swallowed him up and overflowed his fundraising coffers. They cheered him on as he exited the city and turned north.

Cancer snuck into his Marathon of Hope and suffocated his dream.

People had seen that bone cancer had taken his leg. They had assumed he was alright and was awfully brave for running a marathon a day. But when cancer came back and crawled into his lungs, it exploded the myth that people were fine if they continued to live after a cancer diagnosis.

Canada was invested in the life of this man; heartbroken when cancer stole his dream from him; mourned when he died. Canada’s collective emotion drove people to talk about cancer out loud; to donate and fundraise for a cure through Terry Fox runs. Funds pouring in fired up researchers and clinicians to search harder for a cure and to treat people kinder and more empathetically; tangible awareness inspired others to provide support and services to boost morale during dreadful cancer treatments. When someone received a cancer diagnosis, friends, family, neighbours now knew what that meant and rallied around to provide lifts to appointments, hot meals, coffee time. Other countries heard about Fox, and Terry Fox runs sprouted up all over the world. Some cancers are now curable. Children no longer automatically die.

No one with cancer is ostracized anymore.

None of this is true for people with brain injury. They remain in the shadows; mainstream researchers and clinicians talk about strategies and acceptance, not curable treatments; those who understand neuroplasticity and have developed effective treatments remain unknown or dismissed as shams; family and friends are given permission to abandon their injured loved one. And no one is expected to rally around for the years it currently takes to recover and the decades of living within its constricting walls.

Shame and disgust sideline people with brain injury into day programs — keep them busy so that they won’t notice society wants nothing to do with them. Shame and disgust lead so-called experts to judge injury-driven behaviours instead of treating the neurons so that the person can be themself again. Shame and disgust lead most to avoid reading up about it, to avoid the injured person, and to deny the need to accommodate.

We talk good game about concussion in athletes and troops, but we don’t change our attitude to fund treatments, to talk out loud about how the brain affects every single part of you and so every single part of you from your thoughts to your heart can be injured and so need treatment. Talk is solely about the mysterious CTE or PCS — aka untreated brain injury — and donating concussed brains to science.

We need a Terry Fox-type ignition for brain injury.

Brain injury awareness months just aren’t cutting it. What tour de force will ignite a nation, spread awareness of brain injury around the globe to finally change lives for the better?

Books

Voice of America Interview for Concussion Is Brain Injury

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Voice of America American Cafe David Byrd Interview 15 May 2018

I’m so excited to announce that my interview with David Byrd for American Café, Voice of America, is now up and live!

After he interviewed me about my experience and my book Concussion Is Brain Injury: Treating the Neurons and Me, he spoke to Dr. Lynda Thompson of the ADD Centre about me, the treatments, and the hope that my experience gives to people with brain injury — that there are real treatments out there that make it possible to recover! I’d forgotten how difficult it was for me to write until I heard her tell Byrd where my writing skill was at when I first arrived at her clinic. Although I want to forget how bad things were, sometimes it’s good to be reminded so as to realize how tremendously far I’ve come. Take a listen, it’s only 7.5 minutes!

Books

Spreading My Wings, Spreading the Word about Concussion

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I made the 2018 Word Guild Awards ShortlistSo much has happened in the last little while!

It felt like I published Concussion Is Brain Injury: Treating the Neurons and Me and then . . .

Nothing.

For months.

When suddenly . . .

I have been invited to be a Psychology Today blogger . . .

. . . I was asked by online magazines to write articles for them (in progress); conducted a radio interview (yet to air); and . . .

https://twitter.com/ShireenJ/status/994184896519303169

. . . I have been shortlisted for the 2018 Word Awards. I was a finalist with my novel She for the 2012 awards, so this is pretty cool to be a finalist for two different books!

I introduced myself in my first post for Psychology Today, and then got down to business, reading business, for my second two posts:

Reading Loss: The Genesis of Grief, the Seed of PTSD

Cognitive Empathy for Reading Loss After Brain Injury

I hope you will check them out, bookmark my page, and return to read my latest posts. And if you like my writing and brain injury advocacy, please consider supporting me through Patreon, the place for patrons like you!

Books

I am a Psychology Today Blogger!

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I'm a Psychology Today Blogger -- my First Post!

My New York publicist for Concussion Is Brain Injury: Treating the Neurons and Me has been working hard to acquaint various media outlets with my book and persuade them to review it. Psychology Today was one of those media. But they decided against reviewing my book — sigh. Instead, on April 17th, they wrote my publicist to invite me to become a Psychology Today blogger! They ended their request with, “Thanks again for reaching out and we hope we can launch this blog here quickly.” Whoa! They want me right away?! What a total self-confidence boost!! The best part: PT pays a stipend per 1000 views. So many blogs and media want people to write for free. PT’s stipend — if I blog at least monthly and achieve more than 1000 views — not only helps my incredibly stressful and awful financial situation, but makes me feel valued, my ideas validated. I could never have become a PT blogger on my own. All kudos to my publicist!

First things first. I had to gather up all the material for a profile, including a new profile picture, and send it directly to my assigned PT editor who then passed it on to the web team. Waiting for it to be set up was so hard! I feel like my brain injury recovery is just one waiting period after another. But unlike waiting to see or hear back from health care professionals, this wait was only a few days. While I waited, my publicist advised me on my first two posts. I whined then acquiesced at the idea of making my first post an intro: how I came to write my book and become a PT blogger. I chose an excerpt for my second post, following his guide on how to choose one, and drafted the two posts up so that once I received my login information, I could charge on and publish my first post.

Uh, not so fast. PT is very particular about posting. I not only had to select a title but also a subtitle for my profile. That was brain-wracking enough. But I have to do that for every single post I publish, too. Gulp. Writing a title is hard enough! I also have to choose an image. Luckily, I have thousands to choose from on my Flickr site. Unluckily, I have thousands! Next, I have to draft teaser text that will appear on the home page. This is seriously challenging my writing skills, I thought.

I discovered that my synopsis — teaser text — title and subtitle writing skills, have improved tremendously since the last time I had to write a synopsis, years and years ago. All this brain biofeedback seems to be improving my working-writing, things like summaries as opposed to books or essays, in addition to my cognition. Nice surprise!

And lastly, for every post, I have to choose topic(s). Not so simple since PT doesn’t have anything related to brain injury. No concussion. No traumatic brain injury. No stroke. No brain hemorrhage. I decided on Resilience and PTSD for my first post and ran them by my editor. He suggested trauma for future posts. That made sense since my brain injury was from trauma. PT has discussed adding concussion to their list of topics. I hope they add it soon! In the meantime, please check out my profile where you’ll find a list of my posts, books linked to Amazon, and online presences. And you can click here to read my first post.