Tis a strange thing to be wearing a light cotton shirt while one’s clinician (instructor) is wrapped up in a scarf and jacket. We’re still getting used to seeing each other from different time zones, different day of the week, opposite seasons. I noticed right away that the first Sentence by Sentence was tougher than the ones last week. More details; harder to visualize. My consultant had moved me up a level, as we’d discussed during my progress report. My brain immediately felt the effort, yet I’d begun with good energy for me. My clinician asked me more questions about the pictures than she had last week, and she introduced structure words.
I’d been introduced to structure words on the first day. Today I was shown via the document camera rectangular white cards with a structure word on each one, one at a time.
Perspective (where I was seeing it from)
With each card, I had to look at it and fill in my picture accordingly. Some were easy to do. Other words took a little more thought. I find that as I answer the questions — or in this case, look at a structure word and think about how the picture shows it — the picture I visualize becomes clearer, gathers more details, may even become more stable.
When I was given the choice for my second Sentence by Sentence, I chose the Polar Bear Club, for I’d seen many a TV news story on it. It was a bit of a cheat. All I had to do was recall images from those news stories. My brain didn’t feel the effort at all, even though I was reading it. I created vivid images in the instructor’s mind, too. When she began reading to me the first two sentences of the next story — a Multiple Sentence — I immediately felt my neurons straining, like weights being flung onto them and straining their little energy machines. Yeah, the two sentences had abstract details that the Polar Bear Club story had not had, and yeah, it was two sentences instead of one with many details, but the real issue was that I had no remembered images to call upon.
It’s harder to create an image from scratch. It’s harder when creating an image from scratch to shift an image when more details are given to you later in the story that contradict or require changing the initial image. It’s harder to keep stable a from-scratch-image for even a second. The Polar Bear Club images were solid, vibrant, stable. The clothing they wore easily shifted in my visualized image to bathing suits from Santa suits when I was given that detail in the next sentences. In all the other stories I read, colour shifted easily but not location (where) or other structure details.
All of a sudden, my first week at Lindamood-Bell Australia was done! Never so happy as to hear “we’ll stop there” as time was up in my second hour Thursday night. Yet vying with the fatigue was this alertness, this up state that my neurodoc described as excitement, excitement at starting something new and at the possibility that finally at last my reading will return. It’s a strange feeling, two opposite states co-existing in one brain.
The fatigue comes from pushing damaged circuits in my brain to work. The excitement and alertness arise from the circuits I’ve felt being healed the last year or so through brain biofeedback at the ADD Centre, particularly after we began to inhibit 16-20 Hz at the PZ location.
And now I have a new thing to report progress on!
One thing to note here: the instructors (clinicians) and consultants work as a team. It reminds me of the Toronto Rehabilitation Institute where all the health professionals I worked with kept each other informed of my performance, their observations of me, and any issues that came up.
My Lindamood-Bell Double Bay, Australia consultant emailed me my first progress report (see image). I flew through steps one to three, which I blogged on on day one.
Sentence by Sentence Imaging is either the instructor or me reading one sentence from a one-paragraph story and then me describing the picture I see. The instructor will sometimes ask me questions about that picture, details like describe the man or what do the chicks in the box look like or how many people are on the field. When I have a stable picture in my head that through my description creates an image in the instructor’s head, we move on to the next sentence. At the end of the paragraph, I retell each picture I saw for each sentence in sequence. Only once or twice toward the end of the week, did I get details out of order or forgot something. Once I’ve given the “picture summary” for each sentence, I give a word summary based on my pictures — not the same as recalling the actual words in the story, something I can do easily in the short term. Then I give the main idea. A short sentence with three points, leaving out extraneous details but keeping in a key detail(s). Discerning what’s extraneous and what’s key is not always easy! I can get a bit verbose.
Sentence by Sentence Imaging with Higher Order Thinking introduces questions after I give the main idea. These HOT questions are designed to get me to reach conclusions, inferences, make predictions, think about the abstract aspects of what I’ve read.
Multiple Sentence Imaging with Higher Order Thinking is the same as Sentence by Sentence, except instead of reading one sentence at a time, I or they read two sentences at a time. Sometimes the reading finishes with one sentence to reach the end of the story.
The first stories I read in the first three days had concrete things and few details to picture. On Day Four, my consultant interrupted the first hour to have me read one paragraph because the team had noted I was doing well. I read the paragraph, as opposed to her reading it to me, because I find reading harder than them reading to me. So of course I had to do it the most difficult way! She wanted me to recall it using my natural method, ie, recalling the words themselves. I zipped through my recall. No problem-o. Summarized every part of the story. Then she began asking me questions about the images I created. Well, um, not too many. At first, I was able to easily answer, like when I described the restaurant patron. Then it became apparent that other elements, like the chef, I hadn’t created images for or partial ones, like a closeup of a couple of fries, not the plate or bowl or whatever they were of fries. When she asked me for a word summary based on my images, the summary didn’t reflect the story. She noted that the wealth of my background knowledge props up my reading, but I need to generate images from the story, be able to shift the images as I learn more as the story unfolds, and remember the images and story based on those images over time. I need to also not be so hard on myself. They don’t expect me to achieve 100 percent on the first take! Yeah, I know. Others have told me same. I have eased up on myself over the years . . . maybe.
Based on her quick assessment of my paragraph reading, she had the instructors increase the story difficulty by one level. And if there were three sentences left at the end of a Multiple Sentence story, I’d read all three instead of two and then one. And on day five, during the second hour, I was asked to choose the colour of the first square of felt used. Each square is a different colour, and they’re placed in my view prior to reading a sentence or multiple sentences to represent that sentence(s). I’m not sure of the significance of me choosing the colour of the first square (they chose them for the subsequent sentences), but it does introduce a node of decision making, not exactly my forte.
So to sum up the first week: I did steps one to three automatically and easily. Steps four, five, and six were the focus of the first week, and I reached proficiency up to level five and partial proficiency at level 6.
For next week’s goals, I will have push steps added to the core program of Sentence by Sentence and Multiple Sentences. A push step is exactly that — to push my brain. The expectation is that maybe I’ll achieve 40 percent, but the next week, I’ll have gotten up to 70 or so. The push step will be to introduce reading and imaging an entire paragraph at once. My consultant is not yet settled on whether to up the level to 12 for Sentence by Sentence and Multiple Sentences before moving on to Whole Paragraph Imaging with Higher Order Thinking or move to Whole Paragraph first and then up the level. She’s going to try one or the other with me next week. Either way, from Whole Paragraph on, we’ll go up to level >12. Also, it’ll be at least a couple of weeks before they’ll start working on acquiring new vocabulary and more abstract language and week four or five before introducing multiple paragraphs.
My next-step-on-this-brain-injury-journey-related tweets
My neurodoc keeps telling me to put #TTC “on the shelf” because I need to conserve my energy for my reading comprehension retraining. But I don’t know how to do that w it escalating its war against ppl w disabilities and @OntHumanRights not rapping its knuckles. But he’s right.😕
It feels like the weekend because the sun and birds let me sleep in, aka past 6am. Also, my first week at @LindamoodBell is over! Can’t believe it went that quickly. I want to do absolutely nothing all day.
I was tense. I was nervous. Not about the program, but about the tech. Bell, in its imitable way, had decided to move my high-speed upgrade date and, as my ISP had warned, the new date was a maybe, too. I went into a tither over what I was supposed to do. I suddenly had a brainwave: use my iPhone’s LTE Personal Hotspot. I did the speed and tech tests, and it passed muster. Of course, it took awhile to find the best spot to prop my iPhone up for optimal speed because nothing is ever simple. I had tried a different webcam than the one builtin to my PC, but decided after this tech test to stick with my default one. I uninstalled the one that used my iPad as a webcam. This all happened not 48 hours before my reading retraining was set to begin.
I wrote up what to do to prepare tech-wise on Post-Its. Turn WiFi off on all my devices, like, all of them! Put my PC into Priority Only mode. Turn off all the apps I knew about who speak to the internet in the background. And keep Data off on my iPhone to conserve it for my videoconferencing with Lindamood-Bell.
I logged into the website I was given as my online conference room and the webcam I’d uninstalled, poked its head into my webcam space, and said, you can’t get rid of me! Ack!! No picture, and no way to figure out how to get the Lindamood-Bell to use my default webcam. Since it looked like I was the only one in the conference room, I disconnected from the LTE Personal Hotspot, reconnected to my ISP’s basic internet so that I could go googling over how to get Chrome to use the default webcam. Meanwhile, I kept trying to uninstall it; it installed itself back in. I entered this unreal loop of install/uninstall. I tried to delete it manually. Nope. The thing was bound and determined to horn in on webcam territory. Nothing in the reviews ever talked about how difficult it is to uninstall.
Luckily, I don’t get tooooo frazzled over computer snafus and can understand icons on websites pretty quickly. I clicked on the HD icon and discovered that switched the webcam feed to the document camera. I wasn’t sure I wanted an HD feed on the Personal Hotspot network, but it was working fine on my basic ISP one. A lot of time had passed and no sign of anyone on the other side. Turn WiFi back on for my iPad, check my email, see she’s waiting, tell her I am too, and then suddenly she’s there.
Oh, interesting. My basic speed that hadn’t passed the tech test showed her me just fine, and her to me just fine. I think when I require a webcam for me and the document camera for materials I’ll be working on, things won’t be so tickety boo. But hopefully by then Bell will have deigned to upgrade my speed. Now that I’ve decided on forking out for faster speed, I kind of not happy with the slower one.
That was the most nerve-wracking part of the whole two and a half hours.
Instead of spending a half hour getting to know the Associate Director at Double Bay, Australia Lindamood-Bell, and the features, we spent half that time. Was OK. I’d figured out most of the online conference room feature set during the assessment back in June and just futzing around today with pushy webcam software. She wanted to know where the neuroscience articles that was part of my goal were located: online or in print. Oh, hmmm, I think most are online. For those, I’ll have to get the Chrome share extension to be able to share my screen with my instructor, otherwise I would use the document camera for printed materials, like the philosophy textbook. She had read all my emails with the Minnesota centre and my blogs on my experiences there. Cool!
She explained that the first one or two days would be fairly simple. The aim was to familiarize me with the process of connecting words to images. I understood the concept but not how that looked in practical terms. She introduced me to my first instructor — clinician in Lindamood-Bell speak. Instructor. Teacher. Clinician. Person who will guide me back to reading.
I have a different clinician per hour. So today, I saw three people: the associate director and clinicians one and two. My head is spinning!
The first part of the first hour was taken up with him asking me questions about what I do outside of the Lindamood-Bell sessions. It was an interesting way to put the question; then I realized most of the time, students are asked these questions and most of the time, the sessions are four hours long, not two. I’m writing this now because I want to get it down before I forget; I want to cement in my head the process, the terms, to help me get into the groove of it. But no way I could do four hours in a row of this. I have one hell of a concentration headache, which writing is only making worse. Moral: blog not the same night but next day or end of the week!
Anyway, after a few minutes of getting to know me and the kind of books I write, he got into the work. We began with him showing me a picture via their document camera so that I could learn about creating images in my head. I was to describe this picture to him. Then he turned it over, and he described it back to me. He asked me questions about it; turned it back over; and we discussed it some more. The main concept here was structure words.
Structure words to describe an image are (as I wrote down):
Interestingly, when he mentioned sound, I instantly heard the bubbles of oxygen that I had, up to that point, only seen and recalled visually in my head. I hadn’t heard any sounds at all. My perception of the picture and recall were all visual.
We then began the process of me imaging one word: snowman. I was introduced to a second concept: independence.
Independence is me being able to image and describe the picture in my head using the structure words, or as many of them as were applicable. I showed good independence, so we zoomed onto sentence by sentence.
And here I was introduced to a third concept. Before he read a sentence from my first one-paragraph story — about trap-jaw ants — he placed a coloured square of felt underneath the document camera. Each sentence was represented by a different coloured square. I was to associate the picture I imaged in my head when he read out one sentence with the square he put down for that sentence. The process was:
Read a sentence.
Image it. The picture must be stable, otherwise it will become difficult to recall. (My images morphed or were vague.)
Describe my image to him.
Answer any questions he may have to help me fill out that image to both add structure words and represent the entire sentence.
Place the next square on top of the previous one, leaving a bit of the previous one showing, and move on to the next sentence.
Once the one-paragraph story was done, flip the squares so that the bottom — first sentence one shows up at the top — and ask me what the picture was of that one.
Move on to the next square/sentence. I was to recall only my image.
Once I had progressed through all the squares, getting hints if I needed them to recall my image, my eye movements showing him that I was recalling my image not words, I was to give a word summary.
The word summary had to be based on my pictures. I also had to not add things from my pictures that were not in the original sentences.
At the end, I had to give a one-sentence main idea of the one-paragraph story.
I had a five-minute break between clinicians. The new one did another sentence-by-sentence one with me. At the end of the above process, she asked me what she called, “HOTS Questions.” High-order thinking questions. These questions are designed to push inference skills in a logical way. No flights of fancy!
The hardest one for me was when I had to read the one-paragraph story sentence by sentence instead of it being read to me. My first crack at the first sentence ended in immediate amnesia because I’d been so focused on pronouncing the name of the main character correctly. She re-showed it to me, and I remembered to read slowly, word by word, so that my brain could keep up.
My brain had a strange habit of imaging cartoon characters for some of the pictures, like for the paragraph on turducken, my brain insisted the chicken had to appear as a cartoon while the duck was a realistic-looking mallard and the turkey . . . well, it was like a well-drawn illustration.
We ended with imaging multiple sentences. We didn’t have enough time to complete the whole process; I only got as far as creating mental pictures for each set of multiple sentences. But I was quite happy not to have to strain my brain anymore.
As the Associate Director had said, it was fairly simple. Yet the moment my first clinician had asked me to begin to create an image in my head, I could feel my brain work. I could feel the effort even though my mind thought this was dead simple to do and I was showing good independence. He didn’t have to prompt me much.
I would’ve liked to have known who my clinicians are ahead of time. I seem to be OK with the differing accents, American and Australian, but my brain injury insists on knowing what to expect and who to expect ahead of time. Not knowing feels like standing over a chasm, not knowing where my next step will land. Despite that, I did pretty good. And I’m now wayyyy more relaxed about the tech.
*This is unedited because I’m seriously fuzzy headed now.
So 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.
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.
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.
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.
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.
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
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.
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.
My accuracy in reading words is very high.
Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
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.
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
The ability to hear phonemes, the sound parts that make up words.
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.
Vocabulary. And the ability to figure out an unknown word within the context of known words.
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
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?!!!!)
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.
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.”
“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?”
“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.
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.
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.
As followers of this blog know, reading issues continue to plague me. A couple months ago, Dr. Lynda Thompson of the ADD Centre suggested I do a reading evaluation with Lindamood-Bell as she felt this would show me I don’t stack up too badly against the norms for my age group and gender. Lind-a-what?? Took me at least a week for the letters in this unusual name to make sense in my head. I made an attempt to check out their website.
I usually investigate people or institutions before I spend my money. But in this case, because I’ve been so worn down by the last two years, consumed by brain injury grief, given up on my reading, I went only as far as determining that they’re legitimate and seem to have ideas about reading that I’d never heard of — and most importantly Dr. Thompson had recommended them — before calling them to schedule an appointment.
The Toronto office doesn’t have a physical location and the online interaction is handled by their Minnesota office. After a couple of time zone snafus, the centre’s director and I spoke on the phone and arranged for an evaluation to be done over two days. She didn’t want fatigue to interfere with the assessment, and from the beginning of this awful brain-injury-recovery slog, I usually try to divide up assessments so that I can continue to function in daily life or not have to nap for days after and deal with a migraine to boot. Insurance companies aren’t too pleased sometimes with that; people who care about your health are cool with it.
I’ve had no experience with telemedicine. After this evaluation, I’m a fan. I didn’t have to wake up an hour earlier and lose valuable sleep so as to be able to commute to a clinic. I could see and hear the person really well. Not so sure about her me because my computer’s webcam is kind of old. At least she could hear me well.
I had bought a decent-sized display two years ago when after my eye surgery my new vision demanded a better monitor. That display showed both her clearly and the documents conveyed through the document camera or the words on her screen that she shared with me a couple of times. She used Apple earbuds to speak to me, and so I never heard the construction noise in the background that apparently started up midway through the test. Also, my voice didn’t blast all over her office. Privacy!
Best part of the e-evaluation: I was able to be comfortable in my own environment, dress in partly sloppy non-constricting clothes, and not worry about organizing myself to get out the door.
All my energy went to doing the evaluation.
This is huge when you have a brain injury and every single thing takes energy from you.
We launched right in with a vocabulary test unlike any I had experienced before. Usually they give you pages on which words of increasing difficulty are listed and beside which are four other words that you have to decide which one is closest in meaning and circle it. In this test, the assessor spoke the word and I was presented with four illustrations and had to choose which one represented the word.
This test was looonnnnggg. And tiring.
There were a couple of words I couldn’t understand and she spelled them out for me. Apparently, me asking her to spell out a couple of words told them something about how I prop up my reading. More later. There were also a couple of words I’d never heard of before, one of which I couldn’t even begin to parse out to decide which illustration could represent it.
Some of the next tests reminded me of Cogmed exercises I’d done last year and had continued to do in a maintenance form up until early January 2018. I also relied on my cognitive psychology lessons on memory to know how to accomplish the task given me. Chunking and pattern recognition is a great thing.
One test where I was shown for a few seconds . . . let’s say a series of increasingly more letters sometimes in nonsense words, sometimes seemingly random . . . then was asked questions on them, I knew exactly how to do. But my brain had to work SO HARD to do it, my head felt like it had exploded. We had to take a break then she gave me five minutes to put my head down while she turned off the screen. I did extremely well but strained my brain to its max because I have no automaticity in these cognitive skills. Automaticity is what happens when, for example, you learn to walk. At first, you have to focus on every aspect of it. Slowly your brain learns what to do and now, as an adult, you don’t think about starting your legs, moving your legs, you just . . . walk. I guess that’s a metaphor for brain injury. You know HOW, sometimes you can execute HOW but the fatigue cost is enormous because the injury took away all automaticity and/or broke the neural networks to execute a particular skill.
Because it was obvious I was doing well on the vocabulary, spelling, etc. tests, especially that head-exploding one, I commented that this is why people don’t believe I have reading problems. Although I have improved bit by bit, I still struggle enormously with the length of material and acquiring new vocabulary. She said that’s why they have tests for that. They were coming up and would be divided across the two days.
She proceeded to wring out my brain with stories I had to answer multiple-choice questions for. I’ve endured so many neuropsychology tests that include stories that I ace because they’re not new to me and my recall of facts of a story isn’t bad in the short term, that I was skeptical.
I read out loud the first story. She took the story away and put on the screen multiple-choice questions and read them out, one by one, and their answers as I followed along. This seemed like the usual, except that I had to read the story out loud. And she had given me a brief synopsis before showing me the story through the document camera.
The second story dispelled any idea that this was same-old, same-old. Every story was in a solid paragraph. The paragraph stories varied in physical widths, sentence lengths, vocabulary length and difficulty, and other aspects. The questions too were not same-old same-old recitation of facts. They required the kind of comprehension you need in a high school English class aka what is a character feeling or what is their motivation. I needed to be able to create a picture in my mind of what was going on. I can barely do that and hang on to a concept image for my own writing!
After I completed the evaluation, restored my brain with one of my neuromodulation devices, and napped, I thought about how the story test got at the reading skills I learned in high school and university. I remember in one class, our teacher showed us the longest sentence ever written and showed us how to read it. In another class, I was taught how to use an unusual word such that a reader who wouldn’t know it could guess at it from the context.
That test and the story one I did on the second day that had open recall questions spoken to me (not shown me like with the first paragraph test), were the first I recall doing that got at those high school reading skills. Because they jogged my memory of those classes, I can now articulate better one of the skills I’ve lost and haven’t regained all that well.
After a pronounce-these-letters-and-two-letter-combos test, I realized another issue my brain injury created in me. Basic verbal language abilities I had mastered as a young child were gone and I hadn’t noticed. I had also not had any review of those skills during neurorehab in 2000-2001 because I could speak. It didn’t matter how I spoke, the fact I could was good enough, and we focused on communication. Looking back on that, I have to say we barely got started in addressing all the communication issues either that I faced over the years.
After I got the results summary, I looked up some of these tests and, briefly, the origin of Lindamood-Bell, and I have to ask:
Why were these tests not given me in 2000 when I was told I couldn’t read?
They would have teased out where the problems lay and the team would never have advised trying audiobooks. Doing a qEEG would also have told them I have auditory processing difficulties. Failing colossally when I followed their advice to read audiobooks instead of text was probably when my self-confidence began to drop.
I have the results and recommendations from the reading evaluation. Will write on those later. I’m gobsmacked and finding it difficult to process it all. One thing I will say: restoring the brain after brain injury costs A LOT BECAUSE Canada’s universal health care doesn’t cover it. Are you aware?
Several months ago, one of my brain injury tweeps told some of us how she’d gotten a weighted blanket for Christmas and was sleeping snug as a bug — at last. I hadn’t heard of a weighted blanket before. She explained how she’d heard of them through her work with children with autism, and I looked more into it. As I did, Ballast Blankets out of Alberta reached out to me on Twitter, I checked them out and liked their business culture, and I bought their teen size with the assurance of a 30-day money back guarantee.
My biggest concern was my thermoregulation issue: was I better enough to tolerate the heat from sleeping under a 7 kg blanket? Could I lift the weight regularly to wash and make the bed? I decided no and went with a lighter one.
Apparently, weighted blankets work similar to deep pressure touch and so create a sense of calm.
“While research on weighted blankets is sparse, deep pressure stimulation has been found to calm adults and children with anxiety, autism, and attention difficulties, researchers say.” WebMD, Seeking Better Sleep Under a Weighted Blanket
To do that, they must be 10 to 12 percent of your weight. Because of my shoulder and neck injuries from the car crashes years ago, I couldn’t imagine having to lift, adjust, sleep under a blanket weighing ten percent of my weight. The teen size is about 8 percent.
The weight is a personal preference. The blanket has an outer cover that you can remove easily and wash.
I ordered! Your shop was pretty easy to use, the biggest decision was trying to decide what size. 🙂 It didn't say the delivery time though. About how long before it's shipped and which shipping do you use?
I received it as the Olympics were beginning. Uh, bad timing, Shireen.
It’s very difficult to gauge the effectiveness of a new measure to improve sleep when you’re staying up until all hours and/or waking up super early to watch athletes compete on the other side of the planet!
The friendship with my new blanket was a bit fraught because of the Olympics and then the Paralympics and, as well, the usual adjustment period that Ballast Blankets referred to.
I had the blanket lengthwise at first and under my coverlet. But that was too heavy, and I snored! I don’t snore. Not good. I folded down the coverlet so it didn’t add to the blanket’s weight. The second problem was my feet hurt from feeling weighed down. Also, although they’re usually cold, they heat up during the night, and under a weighted blanket, they became red coals. I find it’s better to wear socks and have my feet only lightly covered, weighted blanket or no weighted blanket.
I turned back to the internet and read again others’ experiences. One person used the blanket horizontally to cover both herself and her husband. I decided to try that and stretched the weighted blanket horizontally across my bed, covering me from just under my neck to below my knees. I used my coverlet to cover my feet and just lap over the weighted blanket.
Once I recovered from the Olympics and Paralympics, the effect of the weighted blanket began to take hold. Some nights I got restless; trying to turn under the weight hurt too much. But over time, I got used to how to lift the weight and adjust my position. Restless nights have lessened overall though. I also am using my audiovisual entrainment SMR For Sleep session much much less as I’m not usually still awake at 1:00am . . . 2:00am . . . 3:00am. It’s true, my sleep had been improving. But it began to feel more solid, more like I was falling asleep quicker after my hypothalamus fix night session, and even getting sleepy before 11:00pm or midnight. These amazing changes that I’m still adjusting to could be because of the blanket and/or my PZ brain biofeedback protocol that I’ve talked about before.
It wasn’t just my subjective feeling that showed improved sleep, but also the sleep app I’ve been using for years. I don’t know how sleep apps determine “sleep quality,” but however they do it, it immediately shot up. It took awhile though for it to create a measurable improvement in my sleep. That improvement has remained consistent or risen slightly. Although, one may dispute how apps measure “sleep quality,” it is a consistent method, so I think the measure of improvement is valid.
Once I got used to the weight, I was like other reviewers and actually found it comforting. As summer heat approached, I began to worry about what I’d do . . . maybe use it on the couch like some do during daytime rests or naps. Instead, when temps soared and I began to burn, my body and brain pulled the weighted blanket up to about my shoulders, letting my feet stick out under a sheet. During the night instead of shoving the thing off me to cool down, it crept up closer to my neck. It seems that I’m so used to it now and that whatever it does to help me sleep, burning and mildly sweating* doesn’t deter me from using it.
Researchers are considering looking at using weighted blankets for fibromyalgia, but so far, I couldn’t find anything on how people with pain, physical injuries, or conditions like fibromyalgia tolerate it. From my own experience, perhaps less than the standard weight percentage may be tolerable and still provide some benefits. I think if I had no pain, it would be even more effective in countering the bad sleep effects of brain injury and PTSD.
As for Ballast Blankets, I found them pleasant to deal with and would recommend them. (I received the same discount offered to all early buyers.)
*I’ve written before about my injured brain’s inability to regulate my temps and to sweat, and I wrote in Concussion Is Brain Injury the possible neurological reasons why. I am still not normal apparently: sometimes I sweat and can cool down; sometimes I just burn.
The weather gods jumped our temps from jacket cool to sweaty tank tops. Pretty soon, we’ll be seeing caterpillars munching on flower buds and leaves as this two-headed monster was on a milkweed flower last year.
Brain injury and PTSD are like a two-headed monster sitting on your psyche, slowly munching on your sanity. When one head gets fed alternative fuels to calm it down, the other chews harder on your brains. There are days when there seems to be no solution.
I think I’m supposed to give you hope at this point, talk about how a kind psychiatrist can soothe one head while the other gets calmed and then switch to the other head while the one they was soothing is fed. Or talk about how psychologists advanced in treating brain injury with 21st century technologies can calm both heads at once. Or maybe talk about how inspirational quotes make the heads feel great. Or perhaps talk inspiringly about endurance and grit as psychologists keep feeding and psychiatrists keep soothing the monster.
I have nothing. I’m tired. An old friend reminded me I hit these plateaus. True. I’m still tired though. I think I just need kind listening and supporting as the two-headed monster grows a third head called grief and all three masticate my brain.
I’m not really sure what to write. I’ve had a month of events coming at me, new writing projects and blogs popping into my inbox, keeping me going, prodding me into action, sweetening my life with purpose. . . Suddenly I’m having to initiate work on my own again. And I’m clueless.
Work ebbs and flows like swirls of icing on a chocolate cupcake. It entices to dip in a finger and taste its fragrant purpose. But blocks freeze motion, fray purpose; the icing remains untouched and slowly begins to harden on its surface.