Health

Nineteenth Brain Injury Anniversary

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The brain project, flamingo painted on a brain to represent mental vacation

It’s been a year of painted brains, painted masks showing the experience of injured brains, and no change. Awareness gets you nowhere, it seems. It’s been a year of screaming for help, giving up, and only then getting effective reading comprehension restoration and grief therapy. The irritating reality-denying be-positive messaging finally stopped, and the healing effects of getting the crucial help I’ve been seeking for my reading for almost two decades began.

I wish though I hadn’t had to yell and beg for the help I needed over and over and over and over. I wish people had had the courage and stamina to support me from the start in my recovery. I wish health care professionals had the excitement in their hearts to ditch the neglectful standard medical care of brain injury and innovate so as to give innocent people their lives back.

I hate brain injury. I hate that I had to pay the price of being traumatized to get the effective treatments and support I needed. Why are people so loathe to help the injured?

Brain Health

Eighteen Years, Eleven Months, Three Weeks

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flic.kr/p/2bcpboE

When I first met a person who’d lived with brain injury for twenty years, it seemed so far into the future for me. I could barely comprehend living with brain injury that long. I expected to be fully recovered by that point, myself. Roll eyes here. I was working hard on improving my health, pursuing treatments I could afford, and with the help of a therapist from Community Care Access Centre (CCAC), increasing my functionality more and more.

Eighteen years, eleven months, and three weeks after my injury, I’ve lost the CCAC help due to government cutting back on health care for brain injury to pay for administrators. I’ve suddenly regained reading comprehension and am practicing most days to keep progressing back to my old reading ability (one of my health care providers doesn’t think that’s possible). I’ve lost all the gains I made in my functionality — I’m still hanging on by sheer willpower to writing a novel every November. And I’m trying hard to keep up Psychology Today blogging even while I can’t remain consistent in writing here or on my political blog. I’m facing the horribly unbelievable fact that I won’t have fully recovered by twenty years. The grief is real.

Brain Health

Watching Like I Read: Visualizing and Verbalizing

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Great Courses Plus Mind-Body Course ScreenshotAs a NaNoWriMo winner last year, I received a sweet deal on a subscription to Great Courses Plus. I signed up for it because it had a series on Philosophy of Mind. My thinking was that if I couldn’t read my Philosophy of Mind texts and course work from 2012 well enough to remember, maybe I could watch a series of short video lectures and learn that way. It sort of worked. I couldn’t watch a 30-minute lecture in one go, and I didn’t remember much better. Actually, I don’t recall any of what I watched.

As regular readers know, I spent the summer relearning how to read with comprehension and began reading Philosophy of Mind again, this time being able to understand, remember, and extrapolate. Still, it’s tough. I can read only a few or two paragraphs at a time. So before my subscription ran out, I thought I’d re-watch the 30-minute lecture on Descartes and dualism to augment my reading.

Well. That was different!

I created imagery as I watched, just like I do when reading. It was kind of automatic, which is a really good sign that my brain has changed as a result of my reading rehab ie Visualizing and Verbalizing with Lindamood-Bell. I used a lot of the imagery I had created while reading Descartes’s meditations and some of the related course work.

The most astounding part: I understood the lecture at a much deeper level than I had prior to my summer of learning how to visualize and verbalize what I read. This week, I remembered bits he mentioned in his lecture that I hadn’t known or remembered from when I first watched his lecture or took the Philosophy of Mind course back in 2012 (what I’ve reread of the course so far didn’t mention the bits I learnt from the video lecture). I was able to connect the dots, almost seamlessly. I also watched the entire lecture.

I’m actually watching shows and movies with fewer stoppages, too.

As a result, it was far more enjoyable — the mental work paid off. Just like with reading. The only thing I didn’t do properly was verbalize what I’d watched: speak out loud a word summary, tell myself the main idea, ask myself higher-order thinking questions. I should do that next time.

When you can watch or read with comprehension, it’s not a chore, it’s not disheartening, it’s rewarding.

So since I was again a NaNoWriMo winner and Great Courses Plus again offered a discount and this time in Canadian dollars, too, I re-subscribed so I could start watching the lectures all over again. And this year finish the series.

Brain Power

Last Reading Session with Lindamood-Bell

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It’s over! Hard to believe that it was only four months ago, I was starting to learn how to visualize and verbalize and on my way to regaining my reading comprehension. And now it’s over. I plunged in with Lindamood-Bell on the basis of their decades of experience, their thorough reading assessment, my brain Clinic Director’s endorsement. Even though they were fully confident they could give me back my reading, I was uncertain. After eighteen years of not much progress, how could I achieve reading books again in only two months?

Well, I did it. I ended the original 81 hours back in September and had five refresher sessions one week then two weeks apart. I’m still reading The Lions of Al-Rassan (on page 183 as of today, more than a third of the way through it), and I’m rereading the course material from the Philosophy of Mind course I took six years ago and did well in on the strength of my writing, my short-term memory, my intensive use of the iPad for notes and repeated calling up of word definitions (no vocabulary retention), audiovisual entrainment, and serious napping. Even so, I never acquired vocabulary. I never understood some concepts like Descartes’ extension. And I didn’t retain much of it. But now I’m reading it with comprehension. I’m acquiring vocabulary. The only thing I need to is read and work the visualizing and verbalizing process.

It was sad to say good-bye, but today, I was ready. I’ll still be checking in as checking in helps the student to retain and prevent drifting away from the process. I have to say that because I’ve been intensively writing a novel for NaNoWriMo, I have been drifting away. And some stressful events have seriously interfered with my memory of what I’d read. Having the last of the extra five free refresher sessions today gave them an opportunity to pull me back in and for me to ask for tips.

Read every day. And even if it’s only five minutes during this intensive writing period, read daily to keep the connection to creating imagery. Work the whole process if can read for 10 minutes.

Read daily.

Funny, before my brain injury, no one ever had to convince me to read daily. Not reading a book was a chore. After my brain injury, reading a book became a slog of quicksand-sucking proportion. Now reading daily is difficult yet returning me to the joy of books.

Books

NaNoWriMo and the TTC

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Seven days in, and I’ve written every day of NaNoWriMo. I haven’t been able to do this in years. Most amazing part: write, edit, fine tune, and post one chapter to Wattpad every day. Up to now, at best, I wrote one chapter daily during November. Never edited before. Too scared to even post it for public reading.

It’s rather exhilarating.

And exhausting.

My body feels run over. My voice is dropping in volume. My brain wants a time out — until I begin thinking about Louise, about having fun with this story, about how suddenly riding the TTC is fodder. The worse the slog, the better the fodder. Too bad this counterforce to TTC draining, straining, enraging will last only a month. Maybe if lots of people read it and share it, it’ll continue doing good for all those who have no choice but endure whenever they step onto the red-and-white inaccessible transit. Check it out 👇

Louise and The Men Of Transit

Personal

I Voted

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For eighteen years, since my brain injury, I’ve not voted on my own on Election Day. I’ve had to beg for rides, used special ballots (that was a weird experience), forced to decide who to vote for ahead of time and before I was ready because my poll is far enough away to not be accessible. I couldn’t even find it for the longest time because of my navigational and memory challenges.

Accessibility isn’t just a wheelchair ramp. It’s also how close it is. How easy to find.

When I came of voting age, we could vote in our neighbour’s house. Now we have to schlep to schools and churches and apartment buildings. People with disabilities don’t want to ask for help to vote. They want to be able to do it on their own, when they want. Inclusive design means ensuring independence.

But this shrinking of polls reflects a change in how much we take our democracy for granted. We complain about our politicians but fewer and fewer want to contribute to making the electoral process possible. And fewer and fewer want to vote. City election turnouts are particularly perplexing because wherever you are, whatever stage in life, the decisions of politicians and the city affect you. When you don’t vote and you stay silent when new Premier Doug Ford undermines the election, you have no say in your own life.

You have no say in your commute.

You have no say in ensuring your sewer doesn’t back up.

You have no say when community cops disappear from the streets.

You have no say in whether your road is repaved or not.

You have no say in creating a better park near you.

You have no say in affording where you live.

And you particularly have no say in having the city comply with accessibility laws and ensuring inclusive design in all developments and infrastructure.

When you vote, you learn who your representative is, which means when you have a problem, you know who to reach out to. And you will have a problem only a city politician can fix because calls to 311 may not be enough. Constituency work is the heart of good City Councillors.

Did you vote?

Personal

I Voted

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For eighteen years, since my brain injury, I’ve not voted on my own on Election Day. I’ve had to beg for rides, used special ballots (that was a weird experience), forced to decide who to vote for ahead of time and before I was ready because my poll is far enough away to not be accessible. I couldn’t even find it for the longest time because of my navigational and memory challenges.

Accessibility isn’t just a wheelchair ramp. It’s also how close it is. How easy to find.

When I came of voting age, we could vote in our neighbour’s house. Now we have to schlep to schools and churches and apartment buildings. People with disabilities don’t want to ask for help to vote. They want to be able to do it on their own, when they want. Inclusive design means ensuring independence.

But this shrinking of polls reflects a change in how much we take our democracy for granted. We complain about our politicians but fewer and fewer want to contribute to making the electoral process possible. And fewer and fewer want to vote. City election turnouts are particularly perplexing because wherever you are, whatever stage in life, the decisions of politicians and the city affect you. When you don’t vote and you stay silent when new Premier Doug Ford undermines the election, you have no say in your own life.

You have no say in your commute.

You have no say in ensuring your sewer doesn’t back up.

You have no say when community cops disappear from the streets.

You have no say in whether your road is repaved or not.

You have no say in creating a better park near you.

You have no say in affording where you live.

And you particularly have no say in having the city comply with accessibility laws and ensuring inclusive design in all developments and infrastructure.

When you vote, you learn who your representative is, which means when you have a problem, you know who to reach out to. And you will have a problem only a city politician can fix because calls to 311 may not be enough. Constituency work is the heart of good City Councillors.

Did you vote?

Personal

Small Treats Combat Social Isolation

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Marshmallow kitten in a white chocolate foam in a chocolate cupI sit in a noisy café, sipping fresh, black coffee, eating a cream-filled pastry, writing in my iPhone. My brain pines for peace. My soul needs the treat, the semblance of normal life. My brain will recover; I’m going to be tired by the time I get home regardless of where I go, anyway.

They say that these little kinds of social connections, the brief encounter with a store cashier, the discussion of what coffee to drink with the barista, the fast-disappearing engagement with one’s TTC driver, alleviates loneliness. It isn’t only the big social gatherings that prevent loneliness. In fact, I would say that the big social gatherings in the absence of regular phone calls, text chats, coffee dates, email hellos, only accentuate the downward change in social status, the loss of normal relationships, and the intense isolation brain injury brings.

At the end of a very bad year, I turned my back on the fiction of big social gatherings and scrimping for the future and turned towards spending on the present to gain these many small moments of smiles and hellos with strangers who became known to me and me to them. Even though they don’t know my name.

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!!