Brain Health

What A Holter Report Should Not Be

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I mentioned earlier that I had a Holter monitor test because I had drop-kicked atenolol out of my life. Well, today I got the results. I have had five Holters done total in the last twenty years and have been given copies of three of them, two of them from the cardiologist at a leading teaching hospital, one from a cardiologist in private practice. So I know what a Holter report is supposed to look like. It took almost two weeks to get the results from my latest one, done at a private lab run by cardiologists. KMH Labs.

At first I thought the fax machine had eaten most of the report. You see, these reports used to be like a phone book, then technology made them more efficient so they were only several pages long. This one was one page.

One page.

Well, OK. Maybe this one page is as comprehensive as those bigger reports were. Uh, no.

It gave the range of heart rate (and boy, does mine vary, nothing new there), and I looked for the times associated with the lowest and highest rates like on the previous reports. Not there.

Unlike previous reports, this one didn’t give the QRS total (the total number of heartbeats in 24 hours). It means nothing to me, but it should mean something to my GP. So how can he do his job properly when this is missing? I assume it’s on all the other reports because it’s, like, oh I don’t know, important!

On the good side, the average heart rate over 24 hours is noted. And it’s lower than it used to be! But, uh, what was my average at night and average at day? Never mind, the tabular hourly report will allow for that kind of calculation. Uh, no, wait, the report is just one page. No tabular report. OK, well, then — scanning, scanning — it should say here the time of the fastest heart rate and slowest one. Nope. Not even the longest duration of tachycardia or bradycardia. Oh brother. Who are these people? Never mind. On to the next paragraph.

It said there were five ventricular premature beats (no big deal) and one ventricular couplet. But — I flip fax over to see if by some miracle the info is printed there, nope — no times given either for each one or for the exact time they appeared most frequently, not like it matters in my case, but details are always better — and critical — than vague sometime-in-24-hours-we’re-not-going-to-tell-you-when-this-happened kind of information. Same for atrial premature beats and atrial couplet (never had a couplet before, but one is no biggie). Previous reports gave the time of these events down to the second.

On to the next sloppy part: “no significant ST depression.” For a medical report, this is vague speak. This is like when the doctor pats the patient on the head and says, “don’t worry,” except in this case it’s the cardiology lab telling the GP “don’t worry.” Unreal. In my previous reports, measurements are given as in “No episodes of ST depression (defined as < -1.0 mm or more) were noted in channel 1.” Wait a sec, channel 1? I check my other reports again and see that the number of channels is noted; some results are given by channel. This report doesn’t bother to note how many channels were analysed in the first place and so no results are noted in correlation to them. Guess this is more pat-on-the-head BS.

Onward.

Symptoms are mentioned and what they are correlated with. This is good. Usually the symptoms are mentioned elsewhere in the report or written in by hand and so are incomprehensible. So, for example, I know that the one episode of fluttering was when I had that one atrial couplet. Great. Uh, what time? Was I exercising? Was I using one of my gizmos? I did write those down in my diary for a reason, you know. How come I go to the trouble of recording when I exercised, and nothing is mentioned about that? There are no times given in relation to my symptoms or heart rate. Ridiculous.

Time! people. It’s important!

Time is so important that Holter reports usually include a tabular teport, showing in the left column the hour (e.g, 08:00, 09:00, etc.) and in a line across for each hour, the minimum heart rate, the average, and the maximum; total number of QRS; number of each kind of ventricular episodes (mine are usually a bunch of zeroes, with a 1 thrown in here and there); runs; and the same for supraventricular events. This report has, well, no tabular report because it’s just one page.

A tabular report is really useful not only to see the timing of events, but also for someone like me with a fast heart rate, to see if it does go down at night, to see when it’s fastest, to see if bradycardia events are only at night when in bed or asleep, and when tachycardia is most prevalent. With no tabular report, how the hell will I know if my heart is behaving itself in the less-stressful condition of sleep and slows down like it’s supposed to do? For someone with a brain injury whose system is on overdrive, it’s important to see what events and what times are the worst and the best so that the doctor can tell them… Oh wait, doctors don’t know yet that brain injuries cause problems with regulation of the heart. So, OK, for the rest of us, this information would give us precise feedback on what makes our hearts happier and what makes them speed up, whether exercise helps and for how many hours, whether the gizmos work in a noticeable fashion and again for how many hours. At the moment, I can take my pulse — if I remember, which I usually don’t — before and after I exercise or use one of my gizmos; I can take a guess based on how I feel. But nothing beats precise information. And this report is effing useless in that way.

In the beginning, Holter reports were huge because they included the readings of the QRS or heartbeats. All of them. The one I had back in 2008 shrunk the number of pages by printing out only those times when either symptoms or the incidences they noted occurred, like a ventricular premature beat. They noted heart rate and exact time, down to the second, of each reading. The GP could actually see the QRS of the heart beat and make their own judgement. If they had previous results, they could even compare: is it better? Is it worse? Is there no change? Well, this pat-on-the-head report clearly says you don’t need to know that! C’mon. We’re the experts, you leave reading QRS to us. How disrespectful. But I also wonder: can GPs do basic things like read QRS, at least well enough to put them into the total context of their patient’s health?

Previous reports came with graphical analysis. In one glance, you can see visually whether the heart rate drops at night, when events occur along the timeline, how each channel looks. Fast and effective. But this report is one page. So no graphical analysis. Because you know, stress being such a big problem in North America, and a worse one for those with brain injuries, information giving stress-related feedback is not needed, right? That’s what that stress test is for, the one that gives a snapshot, while you walk or run on a treadmill, not a 24- to 48-hour picture that includes everything from anxiety-inducing events to running (or walking).

I got mad. I didn’t velcro my chest to receive this kind of garbage report. So I called up my GP’s office and complained. They said they’d call the lab and get what I asked for. It may take a week. So far, I have received three pages of QRS readings. I can now see the exact time when my fastest heart rate and slowest one occurred and that they used a 2-channel Holter. I don’t know if a 2-channel Holter is the same, better, or worse than 3-channel; my GP ought to know. But I got curious so went Googling. I found a dog Holter website, which explains that all they need for a Holter report is one clean channel; the other channels are essentially backup. Given how the second channel looks on my report — bouncing off the page here and there — I’d say the backup failed! The top channel looks peachy though.  Anyway, with no tabular report and no graphical analysis, I still don’t know if overall my heart rate drops at night and into normal territory, rate-wise. I’m guessing it does; but hard evidence would be good…

You know, this report was more critical than my last one because I am off the beta blocker now, whereas I was on it for the previous one. How does my heart work all on its own, with no drug helping it along? Getting details on that is important.

This all makes me wonder: How many patients are going to call up their doc and complain about the piss-poor quality of their test reports? How many will even get or ask for copies? Yet unless a patient becomes an active participant in the management and understanding of their own health, this kind of garbage will proliferate and it’s us who will suffer. And we won’t know why.

So while we complain about the lack of health care dollars, basic health information that used to be given is now being withheld. If I hadn’t had doctors who used to hand me these reports, whether I wanted them or not, I wouldn’t have known how inadequate KMH’s report is. If I hadn’t developed the habit of gathering all my health information because either specialists disappeared (aka died) or because of all my insurance lawsuits, I wouldn’t have known how variable cardiac care is. If I hadn’t studied physiology in university, I wouldn’t have even a rudimentary understanding of some of this information. It must all look like gobbledygook to most people; but it shouldn’t to the GP. The GP needs to have a complete picture of their patient. That means they need complete reports.

This reminds me of the stress test I did a couple of years ago at a lab in one of the teaching hospitals (that reminds me of a desert). The cardiologist read out the report to me. I didn’t get a copy and was not well enough to ask for it. I noticed that the techs had “forgotten” to mention why the test stopped prematurely. So, not even the cardiologist gets a complete report in today’s health care system. And people wonder why heart disease remains the number one killer.

Brain Health

Music: What Does the “New” Me Like?

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I have spent the best part of two days sorting out the chaotic mess of my music collection. A “new” refurbished laptop sparked this heroic endeavour. The reason it wasn’t that well organized: most of it I ripped before Y2K, when computers were slow and file names had relatively recently broken the 8-character limitation. Although I fed a CD into my computer’s CD drive every now and then post-Y2K, my brain injury and the consequences thereof pretty much put paid to acquiring new music or even listening to it except when I specifically wanted to listen to it. One of the big changes the closed head injury wrought in me was being unable to listen to music and do much of anything else. No writing, no reading, no talking on the phone.

It’s rather poignant I complete this task 11 years  to the day and date when a multi-car crash rendered my brain – and me – changed forever.

I became a new person. The person that I was died that day. The music I liked changed that day.

But it’s been a long time for me to admit it to myself, never mind anyone else. I used to be a huge – I mean friggin’ enormous – Beatles fan. My first album, back in days of vinyl, was one of theirs. Yet I haven’t listened to The Beatles in years. I have all these CDs; I put their songs on my iPod; yet I skip over their tracks when they come on. I don’t get it.

Well, I should. It’s called a personality change. And just as I’ve almost adapted to my changed taste in clothes, it’s time I faced my new taste in music. The problem is when one has little money and not much energy, it’s a bit difficult to browse and listen to the infinite variety out there in an effort to decide what I like. One thing I know: I like trendy stuff (the old, dead Shireen just shivered in her grave) but not the sappy pop or whatever that is that comes out of the US. Tunes like Nelly Furtado’s, Madonna, and, dare I say it, Britney Spears. There, I said it.

Now that my new laptop got me to organize my collection, it’s time for me to figure out what I like…well, maybe later. Right now, I have more laptop setup to do. Getting a new computer at this time of year was genius. Computers suck up your attention and divert your emotions from crappy days like today.

Brain Health

Eleven Years Ago, Four Drivers

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It’s that time of year again, except today’s anniversary has a special twist: it’s the exact same day as the day two drivers hit the car I was a passenger in and shoved us into the car of a third driver. It’s the exact same day I sustained a closed head injury. It’s like reliving it in real time.

Map picture

Tammy DeSousa drove car #1. I remember it as red and small. Normand Landry drove car #2, the one I was in, the one that, lucky ducks that we were, got hit the most number of times. Kimberley Best drove car #3, an old one as I remember, the one that shocked me when it, from my perspective, came out of nowhere and banged into the rear of our stopped car. That memory makes my hands shake to this day. I was busy composing a scene in my head after having a near scare of almost hitting the car in front of us, Tammy’s car, as everyone ahead braked hard on the downhill of Highway 7 near Islington. There’s a sign at the top of the hill that tells drivers to SLOW THE FUCK DOWN. Well, OK, maybe it doesn’t swear at them, but the warning sign should have, the way the road was at night, at that time. Carla Marchetti drove car #4, the same kind of car I was in, a brand new one. I had just put my left hand up to cradle my neck, fearful of having had another whiplash injury, when she smacked into the back of Kimberley’s car, and he hit our rear again (and oh yes, Kimberley is a man. I know the lawyers kept exclaiming over it, but really people Kimberley is also a male name, get over it, I felt like telling the lawyers.) I went from shock to bigger shock. I don’t know how one does that. I could not believe we had been hit a second time. But my mind froze, my body froze, and then I was in an emotional storm, which when it passed was pretty much the end of my emotions for many years, except for the odd time when they’d burst out of their prison and take me for a wild ride. Anyway, either Kimberley or Carla pushed us into Tammy’s car, I don’t know which one. But I was told later, I had had three impacts to my brain.

Except for Landry, not one driver ever expressed his or her remorse for what they did to me. I understand that lawyers and insurance companies frown on apologies, bad, bad human-healing things that they are. But when the lawsuits and claims were over 8.5 years later, there was nothing stopping them. Of course, they may have forgotten all about it by then because, unlike the injured, the perpetrators and uninjured are not really involved after the deed. They show up at a legal Discovery for 45 minutes or a couple of hours and then again at trial, if there is one, and that’s pretty much it for them. Us injured, well, we endure years of crap: the numerous assessments, the mediations, the bullshit, it all goes on and on like some freaky, wicked energizer bunny. You think paying car insurance premiums is expensive and a pain; try making a claim, a legitimate well-backed claim. It’s a special kind of hell, and for us Canadians gives us a taste of what it would be like to have private health insurance instead of medicare. I value medicare more today than I did before my injury, not the health-care part, but the not-having-to-worry-about-the-finances part and some dickhead-bean-counter-determining-my-health-care part.

When I signed the settlement papers, I grumbled to my lawyer that no one had been held to account for the harm they’d caused me. He said if it makes you feel any better, they will be paying the highest insurance premiums. I doubted his certainty. I knew from another incident before this crash that the worst offenders get tossed from private insurance onto government insurance – I had no idea government had car insurance – and will suffer just from that as government, back in the 1990s anyway, had the worst claim record of any insurer. I thought that if what my lawyer had said was true and even better they were tossed to the government and had  to make a claim and suffer that kind of special Hades in addition to any injuries, then maybe there was some justice. But I doubt it.

I can hear some saying to me silently, forgive them, it will make you feel better. Move on. (Gag me, I hate that phrase, it’s so full of false, reality-negating BS. One adjusts; one does not “move on.”) Well, no, forgiveness doesn’t make you feel better. All it does is allow you to live without thinking of them, being angry for the injustice, every day of your life. I forgave a long, long time ago. Anniversary days, of course, are different. But by tomorrow, I will have gotten through today…well, perhaps not, as memories of what happened on Sunday 11 years ago will probably surface. Well, OK, in a few days, I will have forgotten in the way I do and be living in the moment of the days to come, in the way that became the new me after the crash. And maybe next year, this day will be just another day.

Brain Health

The Hidden Secret of Brain Injury: Hypothalamus Dysfunction

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“I’m going to get off the atenolol,” I told my GP, who promptly laughed at me. Well, I might, just might, have the last laugh.

I was put on atenolol (a beta blocker) 7 years after I suffered from a closed head injury and began 7 years of 120+ heart rate, of yo-yoing blood pressure, of an overactive sympathetic system, high body temperature, water retention like I was on mega steroids, and other stuff. It’s the shhhhh secret no one talks about, no doctor is interested in, no non-brain injury specialist gives a damn about — the fact that your internal functioning is totally f’d up, and it’s extremely unpleasant, and one January day became dangerous to me.

I actually got the first clue at the crash scene. I had had a strange, rare disorder whereby my body didn’t produce enough adrenaline and norepinephrine either normally or in response to stress. So under stressful conditions, my blood pressure dropped like a stone. I was concerned, so the paramedic took a reading. He said it was normal. Well, for me, normal was high. But the closed head injury not only had instantly fixed that abnormal stress reaction, it had taken it to the other extreme and it had slowed down my cognitive processing so I didn’t know what to do with this odd information. Of course, the paramedic thought female, civilian, what does she know what normal blood pressure is, and yeah, her heart rate might be a little high, but she’s just been in a four-car crash. I signed the papers refusing hospital care and went home to rest my hurting neck.

A couple of months later, a psychologist working with my physiatrist told me that my sympathetic system was on overdrive, and my parasympathetic was underworking. I was pretty much in permanent flight and fight mode. A year after that, as part of a stress management course at neurorehab, my stress levels were measured via a sophisticated questionnaire as part of a research study (not via blood tests), and I tried not to get freaked out by the fact that I was in the top level with a rather high chance for death. So high, my excellent stress management skills were insufficient. Peachy.

On to that summer. At that point, I noticed I looked distinctly like the Michelin Man: puffy, round faced, fat feet, no bones showing. The water retention — because that is what it was, not weight gain at that point — was uncomfortable, worse with heat, and though sometimes got better, never left. Worst for me, it covered my weight gain when I started eating in response to stress as I could no longer get lost in books. It was also years before I noticed that my appetite was abnormally high in a way not related to stress or emotion. I sort of noticed too that my skin would develop hot spots which were red and if not put under cold water would start to puff up and spread (it was actually years before I processed the fact that they were literally hot, and of course none of my health care team noticed). Lovely. To top it off, I had chest pain so bad, like an elephant sitting on it and crushing my ribs, I told my OT one day that I would not know if I was having a heart attack. She told me I was not alone. The only one who dealt with that was my acupuncturist. If not for her, I doubt the pain would’ve lessened to tightness and pressure. I also had shortness of breath; I’d do things like answer the phone and pant away as a result. One would think I was out of shape, but as soon as my physiotherapist gave me the green light and exercises, I was moving.

Fast forward to SARS. My psychiatrist (no, not the lying-on-the-couch-yakking type, but the head-injury-care type) was at Baycrest. Me and the old folks lined up to have our temperature taken before being let into the facility for our regular appointments. I noticed my temp was higher than normal but not at minimal fever level, so I was always let in.

That same year, my GP tried once again to have a cardiologist look at my heart. Echo was fine, Holter was fine (well, yeah heart rate a bit fast), blood pressure seemed OK. As I said it yo-yo’d, so one day it’d be 150/(some number), the next 110/70, high-normal for me. Because of the crimp SARS put into regular medical care, nothing ever happened because I was banned from entering the hospital where my cardiologist worked.

Fast forward to 2006. I’d been doing brain biofeedback for about a year. It is an exhausting, amazing treatment for the cognitive aspects of a brain injury, things such as concentration, memory, writing, reading, persistence, stamina, emotional stability, open awareness, etc. They started doing HRV (heart rate variability) work at the beginning of my treatment sessions. The idea was to relax the body and mind, get the heart rate rising and falling in sync with deep breathing, before commencing treatment. The thing was my HRV looked like someone having a spastic attack when trying to draw a sine curve or had simply lain down flat. I had read that there was some hypothesis that in people with brain injuries, if you put the emphasis on cognitive rehabilitation, then the physical body suffers or cannot heal as well. That might explain what happened next.

In early 2007, I had an extreme water retention reaction: the inside of my mouth swelled up. I went to the ER. The person who accompanied me was both fascinated and horrified by the appearing-disappearing hot spots on my face. The doctor and nurse were nonplussed; they probably thought it was a food allergy but I was too dumb to know. They prescribed me prednisone for 5 days and gave me the first pill. Bad idea. But I took it. It made no effing difference to the edema because, of course, it wasn’t from a food allergy. They gave me Benadryl. It calmed my skin down and knocked me out. But I had to stop massage because the friction on my skin created a really, really bad reaction. Every morning and evening I had to calm my skin down with cold water and melaleuca-oil cream. I swelled up with water so much it was like an instant 10kg weight gain. I began to take cold showers (cold showers in winter, with the heat down cause I couldn’t afford the gas bills, fun wow). I slept with my head elevated  — when I slept. My symptoms were always worse at night. It terrified me. I finally stopped pretending I was normal and got rid of duvet and blankets I was so damn hot. I also came to realise that my brain doesn’t regulate body temperature well: if my place is cold or hot, not 21-24C, I become fatigued and symptoms become worse.

My parents paid for in-home meditative yoga sessions to try and calm my mind down so as not to aggravate my symptoms. I saw my old endocrinologist only days after the ER visit; he took my heart rate and immediately insisted I go on atenolol. He was the first physician in 7 years to notice that a 120+ heart rate is not normal and not good. Within 20 minutes of taking it, I felt my stress drop. I don’t know exactly how to describe it, but it was like a calmness overcame my mind, and my body let go in response. I learnt later that atenolol is one of the beta blockers that has this anti-stress side effect, and that’s pretty much why I’m still on it.

It took a year and a half for me to slowly de-swell to pre-2007 levels and to become cooler. Things that I figured out on my own: cut out salt, as salt increases water retention. Cut out pepper and hot spices like chili, cinnamon, and ginger because they increase heat. Eat an egg a day as it helps stabilize the body, as I understand it in my own mind. An egg is one of two perfect foods; it has all the essential amino acids and all the essential fatty acids that our bodies can’t synthesize but require for good functioning and repair plus the latter are needed by the skin for elasticity and moisture. Drink ice water; suck on ice. I tend to push myself, but the fatigue from the brain injury often managed to stop me cold. Pain hurts; fatigue incapacitates. It slowly started to dawn on me that my overactive sympathetic system was draining me too, so I used more AVE (audiovisual entrainment) sessions that would calm me instead of my preferred wake-up-be-alert sessions so I could write and create. I also used it less as I was concerned that it was forcing my brain to work and heal at a rate greater than it could take, like being at the tail end of back-to-back marathons.

Over many months, I adjusted taking the atenolol to very early in the morning with Gaviscon to recover from the night’s horrors and early supper hour so (a) it won’t upset my stomach and (b) won’t either wake me up in the middle of the night or put me to sleep when I’m supposed to be awake. Being like a vegetable during the news is not so bad, as I then become less fatigued afterwards and can answer e-mails or do other normal things for about an hour or so and then sleep better. The fatigue side effect is what really makes me hate this drug. My body’s need for it varies day by day and even during the day, so if I take it and I don’t actually need it, I’ll be unable to get off the couch for the fatigue. Fatigue on top of fatigue is deadening. This is something no physician has ever spoken to me about, even when I bring it up. They just shrug their shoulders like they don’t know what to do about my varying needs and seasonal changes and that the fatigue is no big deal, instead of using their noggins and thinking about it. I find I need less in the summer than in the winter, sometimes not at all in the morning. Go figure. The docs sure can’t.

Meanwhile I saw more cardiologists, had different drugs recommended (didn’t take them as they don’t affect stress levels, and I knew this was the big advantage of atenolol), and I was diagnosed with diabetes.

The next big thing to make a difference was when I met the trainer last summer, who told me I was exercising too much.

He cut my exercise by two-thirds, and he drastically reduced the aerobic portion of it. He said we need to get you sleeping flat, something no doctor ever thought important. I love him for that. So we built back up over time to half of what I used to do, and I now mostly do weights and yoga. I sleep flat, fully covered albeit sans duvet. He told me that because of the changes caused by traumatic brain injury, many athletes cannot return to athletic endeavours, and that was true for me too, albeit at a non-athletic level. The most amazing thing about his regimen was that my shortness of breath and tight chest almost disappeared. No longer did I eat breakfast, pant, pant; answer the phone, pant, pant; write a blog post, pant, pant. Awesome.

Through all of this, I strived to understand what was going on. I have trouble coping if I don’t know and don’t understand. Over the years, I would figure it out and then forget, then realise and forget again, that these symptoms were all related to my hypothalamus and/or pituitary gland. I even saw a pituitary specialist who mentioned that she’d seen the same symptoms in a stroke patient but hadn’t done anything and after several years, it had resolved itself. She never knew why he had the same problems and blood test results as me and didn’t seem to be curious about it either. Well, that did it for me. I was tired of waiting for my brain to heal, if it ever was going to do so in this respect. The specialist, like almost every physician and surgeon, knows little about the hypothalamus (a pituitary endocrinologist not knowing did shock me though since the hypothalamus controls the pituitary), only physiologists or some researchers in the US and Europe seem to have a clue. The level of ignorance over what are considered well-known hormones and how medication affects blood test levels is astounding, never mind the more esoteric hormone testing. And here in Canada, they don’t even seem to know how to test for adrenaline and cortisol. Everyone tests it differently. Give me a break.

So I decided, screw the docs, screw the blood tests, I’m going to fix my hypothalamus myself, living like this is beyond unacceptable. And I began my year-long-plus journey for an answer with a long talk with my father about the basics of this brain part and the action of stress. (A side note: doctors older than about 60 know more about the basics than anyone younger as they studied more physiology and anatomy; today, those are pretty much crash courses. Serves us well, eh?) I thought about the sources of my stress: certain emotional situations that centre around disrespect, cognitive challenge, and physical challenge. I thought about how there could be two reasons for the hypothalamus’s hyperactivity: either I’m under extreme stress or it’s reacting in an extreme way to stress, including normal stressors like walking. Since my symptoms are worse at night, a time that typically is less stressful when the sympathetic system calms down and the parasympathetic increases but clearly was not so for me, I decided it was the latter. If it is reacting at the same level 24/7 as if I have a constant level of stress, then when my stress drops naturally at night, its reaction will in effect be too strong for what is really happening. Also, the hypothalamus is driving my sympathetic system to always be on. I spoke about my hypothesis to a fellow brain injury survivor, who agreed with the direction of my thoughts. And today, I just might be succeeding in fixing some aspects. I’m not there yet, but I’m far enough along that I’m ready to write about it. But first I’ll write about the hypothalamus.

———————-

Note: I write this to share this information with others and to get the conversation going, but I do not write it to suggest that it will work for anyone else.

Part 2: The Hypothalamus and Brain Injury

Part 3: A Hypothalamus Fix for Closed Head Injury?

Part 4: A Hypothalamus Fix Followup

Part 5: A Hypothalamus Fix: Second Followup

Brain Health

Reading: The Eyes and Brains of It

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Reading. Once you learn how to do it, the only thing you need worry about is what to read and when to find the time. Until a traumatic brain injury f* it up.

As I have discovered over the past few years, reading is a complicated process, mediated by several parts of the brain. It begins with the eyes. Your eyes see the letters on a page. They take that visual information and convert it to an electrical pulse, sending it to the visual cortex in the brain. But the brain does more than see letters and words; it also gives meaning to those letters and words. It processes them together as sentences and paragraphs and chapters to understand a greater meaning; it keeps track of each word read so that the big picture develops in your mind; it retains that big picture and slots details into it; it comprehends concepts and descriptions within that big picture; and it learns and retains the whole of it in the long term.

When I was injured, I had a SPECT scan, which showed abnormalities in the frontal, temporal, and parietal regions. The later MRI showed nothing (not surprising because it usually doesn’t after a certain period of time. A PET scan may have but I didn’t have a spare 3 grand). Somewhere in those injured areas lay the ones responsible for reading, but it was many years before I understood which and why.

In outpatient rehab, I worked with a speech language pathologist and occupational therapist on my reading. They didn’t say to me “this” is the reason for your difficulty, “this” being the injured area(s). Instead we spoke about compensating strategies to help me remember what I was reading. To say those strategies were an abject failure is an understatement. I hated reading a light mystery like I was studying for a university exam, with highlighting, taking notes, and so on, yet ending up remembering very little anyway. It’s a strange thing to be reading in the moment, with the past words lost and the future unfathomable. I gravitated toward series I knew already, no new learning or having to rely on a memory that worked poorly. When it took me a year to read and read again a simple book with diagrams, questions, and other ways to help the reader remember and learn from the text, and at the end of that year remembered nothing, I gave up. I continued to read because I always had, but I read only the advice column and simple mystery books, taking weeks to finish one. I read nothing else unless I had to (like e-mails, which I read and reread to ensure I was replying to what they’d written not to what I thought they had written).

It was only after I had a 19-point EEG done that I was told where the problems lay and why having trouble. Why I didn’t have an EEG done before and why physicians and therapists involved in the medical model of brain injury rehab ignore EEGs is beyond me. Sleep specialists with their years of medical training use EEGs quite effectively to diagnose sleep problems — and the computer software that interprets EEGs today is remarkable in how it analyses the data and even produce 3D models similar to MRIs and to a physical model.

Having the EEG done meant we could understand the problem on a physiological level, which is after all where the damage was done, not on a behavioural level, which was not the cause or issue. Yet behavioural is how the medical model deals with cognitive issues. I’m starting to get a bit annoyed with that. Let’s deal with the cause(s) to the best of our ability first and use behavioural as an adjunct, not the other way around or ignore the former altogether.

I’m going to get a little bit technical here and will be focusing on my specific issues. I won’t be talking about the actual ability to recognize letters and words. Most rehab places have that part down pat. For those of you with iPads, download the free 3D Brain app. It’s a pretty cool app that shows the large structures of the brain with easy-to-understand explanations of the function of each area and links to research.

Before I begin, I want you dear reader to understand that the brain is the final frontier, which means we know little about it. To make things tougher, not everyone agrees on current thinking about the brain. Nothing is absolute. Knowledge of each area is not set in stone yet. And anyone who claims that it is, is being disingenuous or closed-minded or plain stupid. By the way, some of the areas I discuss are also involved in emotional regulation and the role of emotions in memory formation, which is a whole other issue for me. But this post is about reading, about how I understand it to work, and will probably be subject to change as we learn more and more.

Getting the Information

Reading begins with being able to receive sensory input, in this case seeing, perceiving, and processing the words on the page. Since this post assumes you don’t have a damaged visual cortex and can see, that’s a much as I have to say on that.

Processing, Synthesizing, Retaining the Information

The brain takes that input, processes it, and puts it into memory. The posterior cingulate gyrus is hypothesized to synthesize and integrate sensory input and long-term memory. It is an important connection between working memory processing and long-term memory formation. It has heavy connections with the posterior parietal lobe, the dorsolateral prefrontal cortex and the parahippocampal cortex.

Cingulate Gyrus, RP MRI Allen Institute

In other words, when you read you’re processing the words, putting them into working memory, and then into long-term memory. It’s like typing letters on a computer screen, having the software record the words, then eventually clicking that Save button. If you have reduced activity in this region due to an injury, you may be able to take in the words – see them on the page, perceive that they are words – but be unable to keep them in working memory and thence put them into long-term memory. Hence, the feeling of reading in the moment, not remembering what happened before. And if you can’t remember what happened before, you’re not building up a picture in your mind and so cannot predict what will come next: something mystery book readers like to do.

Hippocampal image

The parahippocampal gyrus on the right side is involved with attention and selecting what to key into short-term memory. Being on the right side, it’s a bit more visual. This area is not well understood and is being researched intensely after they discovered that it’s involved in memory processing, it may be involved with our personalities and experience, and perhaps spatial processing. If you do not or cannot filter everything you read, then the information is going to overload your brain, and it’s likely to just stop taking it in. This is what happens to me: I see the words, but my eyes skip around the page looking for something easier to take in as the words “feel” overwhelming. That’s usually my cue to stop reading. Of course, half the time I ignore it, which is just dumb as it leads to frustration and a headache. Being able to selectively key in on what you need to know keeps the information flowing and is an efficient way to process and retain.

Broca’s Area 31 sounds a bit sci-fi’sh, but it may be involved in synthesizing and integrating incoming information. It’s usually well known for fluid speech production and a certain kind of aphasia after injury. But some research suggests that it’s also involved in visual speech perception (taking in of speech, not producing it; I wonder if this is why I need to see a person’s mouth to be able to easily understand them??) and in the processing of lexical, grammatical, and phonological aspects of language. What does this mean? Haven’t a clue other than it’s involved in language processing, which is important when reading.

Superior temporal gyrus

Superior temporal gyrus on the left is involved in auditory processing and co-ordination with Broca’s Area 31. It connects to the limbic system (hippocampus and amygdala), the thalamus, and neocortical association areas in the prefrontal cortex. Again no clue what that means. But damage here could account for the fact that I cannot read aloud what I write. The sound of my voice interferes with comprehension. Reading aloud is important to writers because it’s how you can hear if dialogue works and your work sounds fine.

Brodmann’s Areas 23 and 24, the latter in the anterior cingulate is involved in selective attention (as well as modulation of affect — emotion). Unless you can focus on the task at hand, it’s difficult to do it. It’s difficult to read if you’re easily distracted; it’s difficult to remember and to learn if your brain can’t distinguish between important and unimportant stimuli and doesn’t know to focus only on the important stuff.

Wernicke’s Area has been traditionally viewed as being involved in spoken language. But recent research shows that it’s involved in processing language, whether spoken or signed. In my case, the experts couldn’t agree on whether it’s involved in my reading issues or not.

Broca wernicke areas

And then there are the Frontal Lobes, including the prefrontal cortex with its crucial role in executive function: initiation, planning, organizing, and apparently reading. The frontal lobes are a complicated piece of machinery that do all sorts of reading-related stuff.

There’s the big picture issue. Alpha waves open up your awareness. You need open awareness in reading just as much as navigating the street without bumping into a squirrel. Without the big picture, it’s hard to see and thus understand and retain the concepts in a book, or even a plotline. I don’t know which specific areas need to produce those alpha waves to see the big picture.

There’s the attention issue. The frontal lobes may be involved in paying attention (other areas are involved in attention too).  Without attention, there’s no way anything’s going in. Just ask someone with ADD. You need to be able to focus and stay focused on the words at hand in order to remember them and understand their meaning.

Thinking. When you read, you’re thinking. You’re thinking about what’s happening or about the ideas the writer is positing. You’re synthesizing the new information with old information. You’re integrating the two or tossing out some of the old or keeping only some of the new. This is all active. Takes energy.

There’s initiation deficit. If you have no initiation, you may want to read, think about reading, but the Go button is off, and so you do not read. This is why getting the iPad has increased my reading (and mental fatigue!). There are all sorts of cues – Go buttons – from people tweeting links to articles, to apps that make it easier to Flickr (which involves reading comments and descriptions on photos), to apps that make it easier to read Facebook links. When the reading material is brought to you, as opposed to you having to go get it, it’s much easier to get going and read. Other cues could be like the kind that increase people’s desire to smoke: I’m having coffee, so it must be time to read. But that kind of cue is either pre-existing or built up over time.

Lastly, it’s hard to read if all these different areas don’t talk to each other. As you may have gathered, all these areas I’ve discussed either connect directly or indirectly to each other. It’s like following a light pulse from your eyes down your optic nerve to the visual cortex at the back and then from the back of the brain, not quite in a direct line, to the front of the brain. Each part does its own thing but must talk to the other parts for reading to happen correctly.

Coherence is about how each area of the brain works independently from the others, how each area does its own thing, yet each also talks to the others to create an efficient, effective working human being. A brain whose areas all do the same thing is a slow brain that works with effort. An injured brain may become too coherent and not retain that fine balance between independence and interdependence. When it comes to reading, too much coherence may lead to areas not communicating with each other and with the back of the brain which takes in sensory input. It is inefficient and uses up way more energy.

One more thing: closed head injury results in reduced blood flow in the brain. We’re beginning to know that reduced blood flow leads to fatigue and fatigue makes doing anything harder. Think about making dinner. You may not like cooking but when you’re chipper, energetic, perky, you get right to it. But when you’re tired, dragged out, the idea of lifting a pot is anathema. You reach for that takeout menu. Similarly, fatigue, an ever-present problem after brain injury, interferes with all cognitive functions, especially complicated effort-full ones like reading.

So that’s what I’ve learnt so far about the physiological aspects of reading and which injured areas can affect it. My learning really began back in university when I studied neurophysiology as part of my psychology degree. Since my brain injury in 2000, most of the people who’ve worked with me have taken the time to explain things, and I took notes. Not very good ones until after the brain biofeedback, mind you! I heard, read, and experienced the same information over and over these past 10 years, while also learning something new each year. And Google comes in handy to find the information I remembered or had noted down in forms that I can link to. I wrote this partly to help cement into my mind all that I’ve learnt and mostly to help anyone else who’s having trouble reading since their injury and can’t understand why.

Next: Treating and Compensating for Reading Problems

Brain Power

Best Two iPad Apps For Organization

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As I wrote previously, I bought the Apple iPad for two reasons: to compensate for brain injury-related issues and for my work as a writer. Today’s post is about the former.

A huge problem people with brain injuries face is, IMHO, the inability to organize, initiate, and to get things done from start to finish. Even if something gets us going, the silliest small thing can stop us in our tracks. Organizing is a cognitive activity, requiring mental energy, which people with brain injuries have little of. Fatigue is a constant whine to stop.

The culprit: a damaged prefrontal cortex. That area is responsible for turning chaos into organization, for initiating and motivating, for making choices, in short, executive functioning.

It sucks not to have it. It sucks less to have a partially healed one, but still sucks.

Many of us rely on handhelds and computers as our second brain, for the executive function and memory. And although the best help is human help, especially for large projects — like writing a novel! — the more computers can do for us, the more independent we can be because human help is often not available or in short supply.

After I switched from my Palm Tungsten e to the Apple iPod Touch, I bought Pocket Informant (PI), the closest calendaring app to Datebk for the Palm, the very best calendar and task app I’ve used. PI is the only app that has both event and task scheduling. Other apps are either events or tasks, not very useful in the real world of appointments and phone calls, coffee hookups and washing dishes. PI is easy to use immediately; it organizes tasks using the Franklin Covey, Toodledo, or Getting Things Done (GTD) method; and it has a robust and active help forum where the developers answer questions and respond to feedback quickly. It’s important to have quick access to help since most of these apps don’t come with extensive manuals and, if you’re like me, they’re too difficult to comprehend anyway.

PI syncs wirelessly with Google Calendar, Outlook, iCal, and Toodledo. They are working on other sync arrangements, including the native Apple calendar in the next update. Syncing ensures your schedule is backed up elsewhere and allows you to check your schedule no matter where you are or if you’ve forgotten your handheld (assuming you’re close to a computer).

PI recently released its app for the iPad. And wow, has it ever made a difference to me being able to see and perceive my schedule.

I’d been working with a therapist on creating a task list of everything I had to do, similar to what David Allen of Getting Things Done fame advocates. The problem was that it made no sense to me. Visually the list was a jumble — even though we’d tagged all the tasks, put due dates on only the immediate ones, and made just the ones for the coming week “Next Action” items. Every time I saw my list of projects and tasks, it overwhelmed and paralyzed me. I couldn’t make a decision when it came time to setting priorities. Sure, I knew what the steps were to choose and schedule a task, but doing them…not happening. My prefrontal cortext balked. I thought it was all about the visuals. But when I saw my schedule on PI for the iPad, I immediately saw that the task and projects lists were too long. There was too much content. Plus all this content, all this information was in text, which is hard for me to distinguish anyway. I knew immediately what I had to do.

I’d read about Corkulous on Inkygirl’s iPad blog, and I downloaded it. Corkulous creates corkboards on which you can put photos, sticky notes, labels, task lists, and nested corkboards.

CorkulousJeejeebhoy.JPGI took all the tasks that I didn’t have to do in the foreseeable future out of PI and put them into Corkulous. For each task, I found a photo that represented that task. For example, I want to work on my CafePress items regularly, so I found a photo of one of my CafePress items and put that at the top of the corkboard I’d labelled “Goals Pending.” Underneath, I put a small label to explain it. I repeated that for all the tasks but ones I couldn’t think of a photo to represent it.

What a relief!

The task list in PI was suddenly manageable. I could see my current priorities easily — and only my current priorities. Decision making became easier. The options seem fewer even though they are really the same as before but are no longer cluttered up with all my other inbox tasks.

I then created a Current Goals corkboard. Again I used photos to represent each of my current goals: script, Lifeliner marketing, She, new novel. Then I made it my iPad’s Lock Screen. Corkulous allows you to quickly take a snapshot of your Corkboard; under Wallpaper in the iPad’s settings, you choose that snapshot under Saved Photos for your Lock Screen. That way you can see what your priorities are every time you turn on your iPad, but aren’t dunned over the head with it as you would be if you made it your Home Screen. You can also quickly change it every time you update the Current Goals corkboard. Once I complete a current goal, I can then move up a pending goal into the current goal corkboard, or at least that’s the idea. Deciding which pending goal to move up, well, that will be tough.

I look at Corkulous for a quick visual reminder of my priorities before scheduling my week in PI. Scheduling is still not that easy — choosing which priority to focus on, being able to break it into actionable steps, figuring out how much time it will take and when I’ll be most mentally alert to spend that time — all that I still need help with. Sure, I can muddle through on my own, and these apps make it much more doable, but over the long term chaos slowly takes over my mind and without that short conversation, that comment that lights up my brain to see the solution, I go from being organized to reactive and less functional. And so I’m still looking for that computer replacement for decision making and initiation (or a way to use audiovisual entrainment to get it to work better).

One more tip: Most task and scheduling apps use the Getting Things Done method. They aren’t very good at replicating the Franklin Covey method. I finally bought the book by Allen. Understanding how he does things helps in understanding the task options in PI. And using colours to distinguish between kinds of tasks and events, e.g., pink for personal, blue for medical, helps you to visually understand your schedule better.

Brain Health

The Limiting Myth of Brain Injury Recovery

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In the early days of my closed head injury (traumatic or acquired brain injury), I heard many times the mantra that you only heal or heal the most in the first two years — whatever healing happens in those years is it for the rest of your life. In the June 2010 issue of the OBIA newsletter, a survivor’s spouse repeats the two-year mantra, writing “In the first two years after an ABI [acquired brain injury] has occurred is widely believed to be the optimum time for recovery.” May I just say now:

Bollocks.

There is no two-year window, no two-year-only optimum time for recovery.

There has never been a deadline on healing after a brain injury.

The doctors are wrong.

People who buy into this mantra are wrong.

This is limited and limiting thinking.

I say this for four reasons:

  1. Way back in the dark ages of brain research, when I was studying neurophysiology at the University of Toronto (the irony!), when scientific knowledge knew only four or five neurotransmitters, researchers were perfectly aware that there is a cell whose function is to repair damaged neurons. And like any repair tool, this tool continues repairs until they’re done. They don’t stop because the repair cell says, “Oh look, it’s two years. Time for a beer.”
  2. It is well documented, although considered rare, that people wake up from comas after ten years or twenty. Now they could hardly have woken up unless there had been healing going on well past the two-year mark, otherwise why did they not wake up after two years? What were their brains doing for the other 18 if the first two were the optimum time to recover?
  3. Although doctors seem to be oblivious to the fact, psychologists well know that there are methods to heal and treat a brain injury — and that these methods are not constrained by time. When I began sessions with a psychologist about three months after my injury, he began using what he called neurofeedback, but which I now know as audiovisual entrainment (scientists do like to change the names of procedures). He told me that he’d had success with it in improving brain function even in clients who came to him up to 5½ years after the initial injury. In fact, it was about 5½ years post-injury when I began brain biofeedback, a method to treat not just compensate for my brain injury. It accelerated my brain’s healing (almost too fast) and put me into an optimal state towards real recovery, the kind that gives you the opportunity to rejoin society, not stay on its margins forever.
  4. Back to spontaneous healing. Although the brain may heal the slowest of all the parts of the body, like the turtle, it does get there. We don’t know which point in time was the most optimal for ultimate healing even if it’s easier to see healing at certain points than others. I’ve heard stories of those having a stroke and not knowing their family members suddenly call them by name ten years after the injury. I’ve read about survivors who spontaneously regained their old reading skills at three years. I personally started regaining my curiosity at six years. OK, that was because of the brain biofeedback, but from that experience, I believe it’s possible to accelerate spontaneous healing through treatment modalities like brain biofeedback and to temporarily wake up specific aspects of brain function, like focus or imagination, through audiovisual entrainment, and perhaps improve it permanently with repeated sessions over a long period of time. Almost three years after the end of brain biofeedback and more than ten years post-injury, I continue to experience spontaneous healing, healing so dramatic that, though not noticeable on the outside, not physically changing but physically challenging with dizziness, nausea, and fatigue, feels like part of my brain has gone way ahead and the rest of me is panting to catch up. Healing can be a bitch.

The doctors are wrong. And they’re harming countless people by repeating this mantra to them, that gives caregivers and therapists permission to forever sideline many with brain injuries while seeming to help them as much as possible. It’s not that they’re not compassionate, that they don’t care, but that they have very narrow ideas of recovery, that they don’t expect dramatic improvement after two years and don’t seek ways to effect that. They don’t work to regain the full potential of the individual as the mantra has limited everyone’s idea of that potential.

The next time they or someone else parrots the two-year mantra, tell them to stop right there. And to adopt a new mantra: the rest of a person’s life, any time in that life, is the optimum time to recover and rejoin society. OK, a bit wordy. If you have any ideas for a short, catchy one that says the same, please share it below!

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Brain Health

e-Rehab: Organizing Good Lives for Those with Brain Injury

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E-Rehab. I’d never heard of it before this week, yet it makes so much sense. At last, I thought, two people in the health care community are acting on the fact that those with brain injuries need lifelong support around things like scheduling and organizing, long after they’ve left rehab and active treatment.

Although I know how to schedule, I have real trouble scheduling and organizing myself for reasons I cannot fathom. I can get a thing done in response to a stimulus, but not all the time. Still, how often can I rely on getting a stimulus from a phone call or e-mail or a well-timed random thought? Then there’s the problem that unless I write a ToDo down, I cannot even make a simple phone call. Basically, if I’m not scheduled and do not have a predictable routine, I do a lot of spinning my wheels, unnecessary stuff, staring into space as I try to think about what I’m supposed to be doing. I waste too much energy. Important things don’t get done, done late, or only half-done then never finished. Worst of all, I’m dead tired without having been productive or working on my priorities, and it doesn’t take much to tire me out as it is.

As of this year, I am finally getting once-weekly (less on holiday weeks) scheduling support. It has been God sent! The therapist comes to my place for one-on-one and face-to-face discussion of my schedule. Face-to-face is important for effective communication. We go over my priorities for the week and the most doable times to schedule them in. However, the rest of the week I’m on my own, and so if I run into a hiccup, which can happen for the most amazing reasons, like there’s an extra step we didn’t anticipate, I get stalled, and I have to wait until our next scheduled meeting. This is a big drawback of traditional support.

But e-Rehab allows for more frequent and more active support. If I run into a hiccup, the e-Coach could get me going again in a more timely fashion with no initiative required on my part (waiting for me, or most people with brain injuries, to have initiative would be like waiting until after the cows came home and were fast asleep). And, as well, if a client was having a bad day (or week), sessions can be easily rescheduled — no having to wait a week or more once you’re back on your feet and no having to try to remember how to get in touch with them to cancel a session either. (I do have the phone numbers for my therapists/managers somewhere around here…).

Basically, e-Rehab is all about organization that works. It’s about turning you from a sloth in front of the TV to a productive individual who’s part of society by filling in the piece missing from your brain.

With e-Rehab, you get assigned an e-Coach, who can be a rehab support worker, a friend, or a parent. You must have a computer and Internet access. They will help you set up your computer — and your e-Coach’s too if it’s not their support worker. They will even  build a computer that doesn’t require thought to use, simpler than a Mac. You need a calendar that someone else can view over the Internet, like iCal or, I think, Google Calendar. You need chat capability and video chat through Skype. Skype-to-Skype communication would be particularly helpful if your e-Coach is in a long-distance area code. That’s it. There is one useful option for those who have big trouble getting going: remote computer control so that your e-Coach can turn on your computer. More on that later.

At a prearranged time, from several times a day to once a week, depending on your need, you fire up your computer, launch your calendar, turn on chat, and connect to your e-Coach through video chat. S/he does the same. The face-to-face aspect of video chat makes it much easier to discuss your schedule and understand what your e-Coach is telling you than if done over the telephone. Amazing that the e-Rehab folks get this, get that video chat closely mimics the ideal scenario of the Coach being there in person, that many of us understand English better face-to-face, lips in full view, than over a phone. Once you’re connected, you discuss your priorities for the week; you may also discuss your overall goals and how your daily or weekly priorities will help you meet those goals. I’m over 10 years post, and only this last month was I ready to discuss overall goals, and short-term ones at that. So goals may or may not be relevant. Your e-Coach will need to be aware of basics like travel times, what things fatigue you fast and what don’t, rest times, and so on during scheduling. The idea is to help you organize your events and tasks in a doable way, not in a wouldn’t-this-be-great way. There’s nothing worse than being ambitious, trying to fit in as much stuff as “normal” people, and failing miserably. You do what you can manage. As you and your e-Coach discuss your schedule, you type in the events and tasks so that you retain a sense of control over your schedule. S/he may need to prompt you to do so but you typing is a great way to gain a feeling of mastery over your own life. If the e-Coach types them in because it’s faster or easier, then it perpetuates the idea that you’re a child who cannot become independent and self-directed.

Even with all this help, there remains the problem of actually checking your schedule. If you don’t check it, you can’t do it. You may not have trouble with remembering to check for days at a time, but then for some mysterious reason, if you’re like me, you’ll totally forget to do so one morning and will keep forgetting until suddenly you realise days later you’re supposed to be reviewing the schedule first thing. There’s now help for that issue too.

I dreamed of various solutions, especially the idea of having a smart computer that comes on as I enter the kitchen for breakfast. It would say, “Good morning Shireen. Let’s review your schedule and adjust the time of your first event, as I see you’re starting earlier than usual today.” But now there’s a real solution: with remote control access to your computer, your e-Coach can turn on your computer, which is sitting beside your bed, pop up on your screen, and say, “Rise and shine! Time to get up and review your schedule for today.” This is the first time I’ve heard anyone in the health care community acknowledge that getting going is a problem that needs a solution and has come up with one. It’s not about depression; it’s about initiating and motivation — those mysterious processes in the brain that are royally screwed up in those with brain injuries.

So you want to know who these amazing people are? Unfortunately, I don’t know what the company is called because the guys who presented e-Rehab at the BIST meeting (Brain Injury Society of Toronto) didn’t hand out brochures or business cards, and they didn’t stay afterwards to take questions! I didn’t take notes either because I can’t write down stuff and listen at the same time. However, with today’s technologies, and a willing computer-savvy partner, anyone with a brain injury could set this up. It’s an exciting first step. It’s the first indication I’ve seen that someone understands that just because you have a brain injury and are missing this function doesn’t mean you cannot be independent and productive, does not mean you cannot have a purpose. It’s the first time I’ve seen those in the health care field make a concerted effort to learn the technology so that they can help those with brain injuries. Up to this point, the Occupational and other Therapists I’ve met have been pretty much techno-ignoramuses. I’m appalled at how little they know about computers and how they don’t even see them as a tool to liberate their clients. They see no need to learn how to use computers and handhelds themselves. The therapist I have now is unusual in her openness to computers, but even she needs to learn more about what technology and computers can do to help us. The e-Rehab folks are leading the way. It’s about time.

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Brain Health

Attention, Attention, We’re Talking Attention and Traumatic Brain Injury

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OK folks, pay attention, it’s attention lesson time. I know, I know you go through life not having to worry about such a thing, unless you have ADD or a screaming baby. But when life smacks you across the head, ringing your brain, it becomes über important to you and those around you because it’s gone. And its loss can become a source of a lot of BS pontificating and judging from those close and sometimes far who’d rather not know about it, pretend nothing’s changed, and accuse one of making excuses. Ahem. (Attention is also better understood by some psychologists than others in the brain injury field.) So here goes.

According to the Toronto Rehabilitation Institute and the 1994 McKay Moore Sohlberg paper Understanding Attention Impairments, there are five kinds of attention: focused, sustained, selective, alternating, and divided. I had difficulties with all five after my closed head injury, but brain biofeedback restored some of them. However, it has made little difference to the attention skills required when in groups, crowds, and at parties. Those are the ones I’ll address today. So listen up all you people who won’t read this because this is the last time I’m explaining attention issues.

Before I begin, I ought to give a little background information on fatigue and traumatic brain injury or closed head injury. Imagine a certain task takes x amount of energy. After a brain injury or insult, every task takes 10x amount of energy — at least. Whether it’s your heart beating, breathing, eating, nuking oatmeal, brushing teeth, opening the door, dressing, walking, navigating the TTC, talking, answering the phone, conversing, reading, writing, paying attention in a crowd, everything takes more energy, way more. When the brain has to execute a skill or function it no longer has or is now poor at doing, it takes even more energy. That drain is felt in the moment and oftentimes the day after and the day after that and after that as the brain recovers from the work it did. And so trying to use an attention skill that is lost or weak saps one’s energy quickly and for a long time afterwards too. That’s why priorities about when to exert which attention have to be set.

One pays attention to a task or person with one’s brain, but it’s done through the senses. Although this post is about attention in general, attention is mediated through each sense differently, depending on the person’s strengths and weaknesses. For example, one can have little problem paying attention to auditory stimuli but a lot to visual stimuli.

Selective
: This attention skill allows you to ignore distractions in the environment and pay attention to important information, like the person you’re listening to.

As anyone who’s sat across from me at a coffee shop, with me facing the window, knows, I get easily distracted by cute dogs passing by, people walking, cars zipping across my field of vision, changing traffic lights. If I face indoors, then I get distracted by the noise of conversations, the servers, the odd quirks of people eating. If I face a wall, I can focus better, but I hate facing walls. Must be some old claustrophobic thing. Regardless, if I can’t see a person’s mouth, I have a much harder time understanding them because it’s harder for me to discriminate or select between auditory stimuli. It has nothing to do with my hearing because….

I have excellent hearing, always have had. But like with any typical person with a closed head injury, my senses were ratcheted up, filters damaged, and I hear everything: the clock ticking, cutlery dropping, plates being clanked, wrappers crinkling, people coughing, punctuations of laughter, footsteps. Those noises grab my attention like someone grabbing your coat collar. If those noises are in a theatre, they’re like gunshots to the head. If someone applauds behind me, it’s a physical sensation on my ears and back. They compete with what I’m supposed to be focusing on. And that’s just one sense. There are three others also ratcheted up — vision, smell, touch —  taste is just odd. If auditory and visual noise is all around me, like at a party, it’s like a giant challenge to my selective attention and a great sucking vacuum on my energy levels.

People with impairments in selective attention may become easily irritated and frustrated by such extraneous noise.” (From McKay Moore Sohlberg paper)

Grumpyface — from the Doctor Who episode The Time of Angels — is a good descriptor!

Alternating: This attention skill allows a person to switch their attention easily from task to task or person to person in a group or party. Apparently, this is a high-level attention skill.

I find it takes me a moment when I have to switch my attention. When someone suddenly forces me to switch attention by popping up behind me, asking a question, demanding I switch attention instantly from what I was doing or saying, without a gentle intro hello, it irritates me and actually slows me down more. Of course, this happens naturally in parties when someone will appear from seemingly nowhere (the nowhere part is an alpha-wave open-awareness issue where lack of awareness leads to easy startling — see how problems start overlapping?) and want to interrupt. This is rude from where I come from, but pretty commonplace here. A normal person may at worst get a bit anoyed with the rudeness of the interruption, but a person with a brain injury will also feel discombobulated and overwhelmed at the sudden need to switch attention. Irritation times 10!

Divided: This attention skill allows a person to pay attention to two or more things at once. Another way to look at this is multitasking.

A common divided attention scenario is driving a car and listening to the radio at once (frankly, I think simultaneous attention would be a better moniker, but I digress). Well…with poor divided attention skills, I can’t be a passenger in a car and listen to the radio at once, especially when the car starts to move at 50 or 60 kph or more. Then I start feeling overwhelmed, like being in an IMAX 3D movie theatre watching Star Trek and suddenly the screen goes to warp speed and Kirk is calling for Spock behind my seat and popcorn has been dumped all over me, all at the same time.

I first fully understood I had a problem with divided attention when my Dad was talking to me while I was trying to slice bread. Couldn’t do it. I still have trouble listening and slicing at the same time.

So imagine having deficits in these three attention types and being at a party — an event full of distractions by its very nature — with every sound cranked up to ultra-high in my ears, with the visual distractions of brighly-coloured people moving around like flashing beacons screaming “watch me, watch me”, and the smells of food and perfumes and shampoos shoving themselves up the nose, all demanding attention. Add to that people naturally placing demands on weak or nonexistent divided, alternating, and selective attention just by trying to converse with you or you trying to mingle. Fun, wow. Yet some people still insist I should show up to such shindigs because that’s what I used to do pre-injury and if I don’t, it’s proof I’m using “excuses” or don’t care.

The compassionate, human response is to understand these issues and then to listen, listen to the one with the brain injury when they say “I’d rather see you over coffee, in a quiet place, one-on-one, where I can be myself not Grumpyface, and when I won’t have to spend days recovering just because I chose to socialize.” The alternative is to be unaccepting and so build a stone barrier between yourself and the one with the brain injury.

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The other two kinds of attention are focused and sustained.

Focused: This is the basic attention skill where one notices objects or events and specific sensory stimuli in the environment.

Sustained: This attention skill gives one the ability to stick with an activity over time, like reading a book or writing an essay or commuting on the highway. Inconsistent performance, varying from excellent to nonexistent, like one day remembering a phone number long enough to dial it, another day not, may be problems with sustained attention.

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