Brain Power

Reading v. Learning: A Thought Exercise

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Is reading learning? Are the higher cognitive aspects of reading really just learning and concentration? Are my problems only learning issues and not reading ones?

If it’s solely a learning issue, then logically I would have the same kind of issue with any kind of learning. If learning is the issue, then the modality of learning should have no impact on outcome. So let’s compare.

When my physiotherapist teaches me a new exercise, he demonstrates it, may guide my movements, observes my physical motions, and counters any mistakes. I have no problems learning new exercises. Now, you could say muscle memory is not the same as mental memory, that learning a physical movement requires different kinds of cognitions, thus you cannot compare it to reading. Yet, after my brain injury, up until relatively recently, when I walked, it took conscious thought to walk. On the outside, I may have looked like I was walking normally, but on the inside of my head, I was telling myself to keep moving, to move my right leg forward, to continue the forward motion, to move back to the centre of the sidewalk. I had to remember cognitively how to walk so that I could tell myself how to do it. Muscle memory comes after conscious memory. I didn’t realize how much conscious thinking went into the simple physical act of walking until the day I stopped doing it.So yes, I have to learn physical movements cognitively before they become embedded into muscle memory, and I must be able to concentrate in order to learn them.

No problem on either count.

I will say the memory fades after a week or two if I do not do them after I have been taught. But I don’t believe that that fading time is abnormally short.

But okay, let’s assume physical learning is a different beast from mental; let’s compare reading to learning through spoken language. When my neurodoc told me to tell myself “it’s 2014” when I’m having a flashback, I retained that instruction and no matter how many months or weeks or days apart the flashbacks occurred, I recalled that instruction well.

But that’s a simple instruction. I would have retained that if he had written it down for me, no? Hmm. Written instructions I keep in order to read over and over because I do forget them.

What about a complex spoken instruction or question? He asked me a question recently that I had trouble retaining, but that was because I wasn’t paying attention to him at all but to something else. When I pay attention, like when he gives me my reading homework assignments, which I don’t write down, I remember them. I also have no trouble following his reasoning, learning what he wants me to learn.

My concentration is measured as excellent, much better than a normal person of my age and gender, yet paying attention to someone when they’re talking is far easier, especially face to face when I can see their lips move and their body language, than paying attention to text on a page or screen even using all my strategies and devices. That problem is unique to reading ergo it’s not (simply) a concentration and learning issue.

What about flow: do you  need to be in flow to learn? No, but you do need to be in flow to escape into a good novel to the point of losing all awareness of your surroundings and bodily needs like hunger. Reading a good novel is not satisfying unless in flow. I have not missed being able to enter that state of flow when learning these past 15 years, only when reading good books.

What about the big picture? The hardest part for me about my reading assignments is building up the big picture, of adding fact to visual to concept as I read along so that eventually the entirety of the piece reveals itself to me and I’m able to retain it. Trying to keep hold of what I’ve read while adding to them is taxing. But that’s learning! Isn’t it? Or memory? Or some more complicated cognitive process? When my neurodoc goes into his expository mode, I have had trouble listening for that long. and I told him a couple of years ago to keep it short. When he does that now, the biggest trouble I have with it is his vocabulary and the way he uses words.I don’t have trouble building up a picture in my mind of what he’s telling me when I can understand his vocabulary. That is language not learning.

I think it’s a false dichotomy to say the higher cognitive functions of reading are learning and concentration. Yes, learning is involved, but I remain convinced after this adequate thought exercise that my main problem with reading remains – reading.

Brain Health

Do Therapists Need to be on Twitter?

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Data don’t lie; you can’t hide from data. Mid-August my gamma brainwaves had dropped, my ever-spinning busy brain, heart rate, and muscle tension risen. Then my Pastor helped me make a necessary decision, and all my brainwaves returned to my normal the first week of September. I learnt a hard lesson about social media and therapists.

The situation on Twitter my Pastor extricated me from had been unfolding for months. I had been blind to it because of being a woman who hates confrontation, because my injured brain processed slowly what I was experiencing, because the PTSD hell I am in deafened me to the subtle difference between concern and obsession.

When I began to feel crowded in late August, I spoke to three therapists, a peer mentor, friends, and family about what to do. The situation changed daily and hourly; advice I got was old by the time I returned to Twitter. My inability to make quick decisions, my self-doubt, my slow processing all rendered me unable to handle the situation in real time on my own. I didn’t have weeks for my brain to process sensory input and initiate an action plan. I needed professional help. I didn’t receive it from my not-on-Twitter therapists. If I had told any therapist a man I knew was suddenly knocking on my front door every. single. day with a bunch of roses, then roses and chocolates, then roses, chocolates, and teddy bears several times a day, what do you think they would have said? Probably not “I can’t tell you what to do.” Finally I thought of my Pastor. He is a professional, he knows off behaviour, and he participates in social media. It was the latter that benefitted me. He understood the milieu, the tools to protect people; he knew what I needed to say and what I needed to not do. Mute, block, report, in that order, he repeated to me, if the man keeps getting to me. I wrote down his instructions and acted.

Relief. Then I got angry.

Imagine being a person with a brain injury who discovers Twitter, begins to flourish socially, then is informed by mental health professionals who are not on Twitter how it’s not “real life,” it’s only a start, how they need to get a social life in the “real world.” And to leave if someone is bothering them.

It’s patronizing, unhelpful, uncomprehending of social media, and a nicely worded putdown of your client’s experiential knowledge of Twitter as if it’s not as good as your what-you-heard-through-the-grapevine knowledge.

How can you really know the new and opaque Twitter community if you’ve never lived in it? Would you consider yourself qualified to help a person if you had no experience with commuting, with working, with living with a family, with friendship, with social clubs, with professional groups? That’s the kind of therapist you are when you attempt to aid a patient on Twitter when you’re unfamiliar with it yourself.

Up till now, I’ve thought it would be nice but not necessary to have my therapists on Twitter with me. But I’ve changed my mind. It is necessary for people in the helping professions to be on Twitter, to be experientially familiar with it.

So this blog post is for mental health professionals with no social media life experience.

  1. Social media, specifically Twitter, is real life.

  2. People in the helping professions who are not participating even to a small, regular degree, cannot help their patients or clients when toxic situations arise. They may think they can; their clients may hope they can. But they can’t.

How can you tell when behaviour is tipping from a bit too interested to obsession to stalking when you’re not familiar with what’s normal behaviour on social media?

When would you advise a patient being harassed on Twitter?

You may have heard about the obvious dangers where men tweet vicious rape and death threats to women. But people also become obsessed with a tweep so subtly and cleverly that fellow tweeps won’t recognize the danger. These people can control a person through misusing good Twitter features and can stalk them with no effort. I can see furrowed brows as you guys not on social media think “following” is stalking. It isn’t.

That’s the essential problem isn’t it when your patients or clients are on Twitter or Facebook and you are not: you speak different languages.

It’s like the telephone forty years ago. The instrument of instant voice communication was ubiquitous in Canada but not in England. Every time I visited England, I’d go to call someone and was sharply rebuked. What? What do you mean I can’t just pick up the phone and talk? What do you mean I can only use it if urgent and to use the mail instead? Since when do people use letters to talk to each other?!!! Argh!!! The English relatives would have the opposite experience coming to Canada; they would marvel at this concept of easily talking to people any old time and for as long as they wanted to. How novel! How fast! How freeing!!

That’s social media: novel, fast, freeing; also fun, challenging, stimulating, newsy.

But a therapist not on Twitter is like that relative in England: unknowing and unbelieving.

Twitter has matured into a community separate yet threaded into the world. Today, people of like minds meet each other across space and time; people of opposite minds debate and people from different cultures learn how they argue differently, making us Canadians appreciate how respectful we are; people talk to each other rapidly as if face-to-face, as well as in slow motion over several hours; people congregate around conversations like at the best party ever; people strike up friendships, draw “real-life” relationships closer, and take Twitter ones into geographic space, thereby changing them in unforeseen ways; people live tweet events to an audience who watch through their smartphone apps; journalists smash through the confining walls of traditional media; people influence politicians; and people get a hell of a lot better customer service – it’s amazing what complaining about bad service to one’s 1000+ followers does for your telephone service. Tone, mood, tiredness, hunger, laughter, knowledge, EQ, IQ, sense of humour, interests all come through in tweets. People become intertwined; personal discussions are conducted in public instead of privately through DM. As a result, all sorts of social cohesions and problems crop up that therapists have no clue about, even if explained through the imperfect filter of their patient’s experience. How would you advise your client in trouble on Twitter? Perhaps tell them to take a break from social media, as I was told to?

But that advice blames the victim and reveals your harmful-to-your-client ignorance of safety tools created to allow the victim to stay on happily while sending the offender out the air lock. Can you imagine advising your client to not visit their friends, don’t read the newspaper, don’t talk to politicians, don’t attend events, don’t watch videos, don’t listen to music, don’t share your photos, don’t write? Well, that’s what you’re doing when you suggest quitting Twitter or social media.

What does a patient do when a painful conversation pops up in their stream? Could you advise them and recognize the urgency if their tweeps began arguing with them, muted them, blocked them for no reason they could understand? Arguments are a fact of Twitter life. Not all are bad. Political or news-driven arguments are informative or entertaining and the cool thing is that strangers jump in – but perhaps a person with a brain injury or social phobia would hesitate to participate without your help. Being able to ask you, their therapist, for knowledgeable guidance would not only be nice but moreso necessary for people with poor social skills and/or low EQ, dontchya think?

Relationships on Twitter are real ones. People are people everywhere. They bring their baggage into the Twitter community, even when they intend to hide it. If they tweet regularly they’ll eventually reveal more and more of themselves.

One of my therapists said it’s like texting. Um, no. It’s more like film acting or writing a book in that you have no specific audience in mind. Maybe one day when you’re a little emotional or bored, you tweet out something revelatory. You mayn’t get a reply, so you won’t know it was read. That drops your guard a little. You tweet out something more revelatory. Pretty soon, regular followers and anyone checking out your timeline will develop a pretty good picture of you. But in texting you always have one person firmly in mind – so you’ll remember to keep hiding what you don’t want the other person to know. And no one ever joins in that conversation sans an invitation.

I was also told it’s like a dating site where the person you’re supposed to be exclusive with can see when you’ve logged on and who’ve you corresponded with. Really? I had no idea. But, um, no. Twitter doesn’t reveal lurkers. But Twitter does make monitoring dead easy: turn on notifications on a favourite tweep and voilá, as soon as she tweets, your smartphone or tablet buzzes. It’s a great feature for friends to keep up with each other or a therapist to monitor a fragile client, but it can also be used to obsess over a person. Or control them. Or stalk them. Fun.

Would a therapist not on social media know about that?

No. You wouldn’t. And so you might say soothingly, it’s only a coincidence he tweets you within minutes of you tweeting and he’s suddenly mimicking your tweets, not recognizing the danger to your client.

Would a therapist not on social media know Twitter is like face-to-face communication and how rapidly things evolve or devolve?

No. You wouldn’t. And so you might tell a woman patient with a brain injury worried about a man obsessed with her, that you can’t tell her what to do but can discuss it at the next appointment if it remains unresolved, as if she has weeks to decide, compose, act.

Would a therapist not on social media understand mute, block, report?

No. You wouldn’t. And so you would tell your client to take a break from a big part of her real life instead of advising her on how to use the safety tools in order to stay in her community sans being harassed.

Well, what’s in it for me, asked one health care professional of me, as if being able to advise their patient appropriately was not a good enough reason. Ahem.

Well, okay then: what’s in it for you to live in a community, live in Toronto, be part of Canadian life?

Do you read newspapers? Twitter will provide you broader and more comprehensive news faster than your traditional newspapers, TV, radio, way beyond what you can imagine. Do you like to influence local politics? Twitter will get you direct access to policians, bureaucrats, and journalists. Do you like to chat over coffee? You’ll meet all sorts of people from around the globe to shoot the breeze with. Do you want to expand your professional learning? You’ll get together with patients and fellow professionals in scheduled chats. Do you want to meet like minds and be challenged by new ideas? Do you want to break out of your geographic box and meet your fellow Canuckians, learn about Canada’s North, feast your eyes on the gorgeousness of our country, our planet? Do you want to meet your fellow professionals from the UK, Australia, India, etc. socially as well as professionally? Do you want to participate in your professional conferences more fully? Do you want to watch volcanoes blow complete with visible and audible shock waves? Do you want to participate in or watch events you can’t attend? Do you want to discuss a TV show no one in your family is interested in while you’re viewing it? Do you like to people watch? Well, Twitter does all that and more because it’s a community comprising flesh-and-blood humans connecting through their minds. Rather sci-fi’ish I know. But real.

Twitter is real life. Twitter is where your patients and clients live. That is why you as a therapist must join in. Or if you choose not to, know that you are abandoning your client to the deceivers of the world while you watch from the sidelines benignly.

Essay

Happy New Year!!!

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The clock struck midnight. And the second hand ticked past. Fireworks exploded in city-lit skies. And people yelled, “Happy New Year!” Fingers tapped out texts to far-flung relatives, and phones rang everywhere with exclamations of joy and promise to come. Some twittered their resolutions to each other, and older somes with a smile, avoided making any.

It is customary on this bright first day to look forward way into the year, to make life goals and year goals, but I advise: live in the moment. The moment is peace. It promises nothing and disappoints not. The moment leads to another and another, and soon it leads to another midnight of glittering stars in the night sky, of Happy New Year!!!

 

Brain Power

I Am A Survivor Journeying to Thriver

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BIST (Brain Injury Society of Toronto) supports people with traumatic or acquired brain injuries (like moi) and their family members in the Toronto area and are affiliated with the Ontario Brain Injury Association. BIST asked me to write a survivor story for the BIST Beacon (PDF file), and my story appeared originally in the October 2011 issue. I reproduce it here for you.

My name is Shireen Jeejeebhoy. And I am a survivor. That sounds a bit like an alcoholic introducing herself at an AA meeting. But my injury was wholly involuntary — I had no say in it. More importantly, alcoholism is known while brain injury and its life-changing aspects is invisible, except in hockey players when they miss games. Yet even then, how much does anyone know about the utter destruction brain injury wreaks on a person and the long, slow journey to a good life?

My journey began in a four-car crash in 2000. I was the front-seat passenger in car number two: three impacts, three back-and-forths of the head, on top of a severe whiplash sustained nine years earlier in another car crash, which may have made me vulnerable to a closed head injury in 2000.

It was eight months before my brain injury was recognized, diagnosed, treated because I had no broken skull, no loss of consciousness.

I entered the world of outpatient neurorehab. Therapists surrounded me with encouragement and advice, cheering on each new accomplishment, even if only for reading a whole page in five minutes. The things that had been trivial had become mighty mountains to climb. It gave a new perspective on the skills acquired in childhood, taken for granted in adulthood, and lost through injury.

But the medical model hit a wall. I need to be able to read and write, to think and synthesize, to concentrate and listen, to see the big picture and remember. My reading problems were not the well-understood ones of being unable to recognize letters and words, but of being unable to read long enough to understand, to remember long enough to add to my current knowledge, and to see the big picture — that is, all that I had read, as I progressed through an article, never mind a book.

The medical model cannot do much to fix higher cognitive functioning issues. But psychologists can. They use computers, brain biofeedback, at-home devices, psychological techniques, breathing, visualization, to name a few techniques, to accelerate brain healing. The brain can heal — we know that from the “miracle” stories of people waking up from decades-long comas — but it’s slow. The key is to stimulate that process. At a basic level, it’s to do what we did as kids: practice. Every day. Without fail. But at a treating level, it’s to see the brain as an electrical organ, not just chemical. Its inputs are eyes, ears, taste, touch, smell. It can be trained to heal itself fuller, faster.

Unfortunately, it’s difficult to achieve that all on one’s own and so long as the survivor and their doctors cling to absolutes about brain injury healing. Yet brain injury let’s people explore new territory and to create stronger, caring bonds with new friends or old working towards a shared goal: reintegration into society and creating a new purpose. Full functioning is not a pipe dream. It’s hard, years-long, but doable.

Essay

Identity

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Identity. What is that? With the 9/11 anniversary imminent, Muslim identity is one of the hot topics on talk shows. With school starting again, African or Caribbean identity in our education system is on some minds although not as dominant as last year. And in cyclical fashion, First Nations identity is discussed amongst some Canadians. We’re concerned about what it means to be (fill in the blank), the stereotyping of certain peoples, and the idea that children don’t see themselves reflected in their teachers and in their classwork to their detriment.

I’m a half-breed. I’m half of a people so decimated, there are purportedly only a couple of hundred thousand left on the entire planet and whose official structure didn’t recognize me as being Parsi (they do now) because of a deal they made centuries ago in order to survive. Half of hardly anything is rare indeed. It would’ve been an astonishing day to see a person like me teaching me or mentioned in any of my studies as people to admire. I was so rare that it wasn’t until the 21st century – until after an influx of people who worked and played alongside people like half of me on the other side of the planet — that anyone knew what I was talking about when I mentioned I was Zoroastrian or Parsi. My heritage is actually writ on my face – except for my nose. And thank God for that. Parsi noses are prominent. Anyway, because of that, some Russians, Indians, and Iranians look at me and know me.

It is strange.

And I’m conflicted.

I grew up in a school system who knew no one like me. It was so bad that when I was taught classical civilizations in high school, I rooted for the ancient Greeks in their war against the ancient Persians because that’s who my teacher – the irascible Mr. Payne – rooted for. And, as well, there were lots of Greeks left to care for and advocate for their history; Parsis don’t even live in their own land anymore, never mind have control over their structures, history, and names. (Many think my name is Muslim. It isn’t, it’s a Parsi name. The co-opting of Parsi names as Muslim ones would be like Cree names being co-opted by the English and identified as English names.) And despite being an argumentative, debating lot, Parsis as a people have no voice. It was a long time before I learnt that the ancient Persians were my ancestors. And so I can’t get excited about people blaming the lack of seeing themselves in their teachers and coursework for their lousy performance. In the end, it wasn’t seeing myself reflected at school that drove me to do well, it was what I was taught at home, told over and over and over and over and over again that only good marks would do, specifically “A”s.

Yet I find myself increasingly annoyed at the token female syndrome. You know, that’s when a talk show has a panel of which only one member is female so that the show or host can say they represent all perspectives. Yeah, right. When TVO gave the boot to Paula Todd, they also gave the boot to female equality in front of the camera on The Agenda. I’m not talking about going from female-male co-hosts to male host only. I’m talking about panels of five being all male but one. And why is it panels of three can only be two males plus one female? Why never the other way around? In the 21st century, there aren’t such a dearth of expert women that it would be hard to fill a panel with them.

Seeing these token-women panels makes me feel like I don’t matter, that as a female I have a voice so long as the men around me let me have one. As a half-Parsi, half-English Christian, I don’t feel like that at all. My Parsi heritage taught me to use my voice, that it counted as much as anyone else’s. And so as a teen and adult I never let patriarchy or misogynist attitudes shut me up or to feel less than. So what gives now?

Decades of being worn down by the inequity of being female.

And moreso, losing my personal identity because of brain injury.

It’s tough enough to belong to a group no one’s heard of, but to not yourself know who you are, with no solid group identity to hold on to, is a torturous place to be. Yet that’s not as bad as inhabiting the female identity, for women are treated so badly, so routinely that the fact the glass ceiling hasn’t moved in twenty years barely mentioned a blip on the evening news. In all the discussions of how hard it is to be a Muslim in a Christian society (try being a Christian in a Muslim society, ahem), an African- or Caribbean-Canadian in the ghettoes, a First Nations member on a poor reserve with no running water, the pundits and opiners forget that to be female in any society is to be below every culture, every ethnicity, every race, every creed. Is it any wonder then that too many women who achieve success lash out at the other females and keep them off the airwaves and out of the boardrooms? To be female is to have the most contemptible identity of all.

Brain Health

Medicine Admits Concussions Bad but Still Doesn’t Understand

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I read an article in The Toronto Star recently titled “A Blow to the Head is a Big Deal” by Megan Ogilvie (8 April 2011), and I knew I had to read it. It wasn’t long before I was grumbling and had to comment on it. So here are some excerpts with my thoughts.

““The brain goes brrrrrrrrp and is temporarily out of order,” says Richards.

This massive electrical discharge is why people who have suffered a concussion are initially dazed and confused. The hit has obliterated their short-term memory.

“They can’t remember their name, where they are, what day it is, what they are doing,” says Richards. “It’s kind of like the brain has to reboot because the seizure has wiped the slate clean.”

I don’t remember being dazed and confused or even not knowing who I was. What I remember is after impact #1, I froze, raised my hand to protect my neck (as if that would work), and then started thinking again about the book I was in the middle of writing — Lifeliner. After impacts #2/3, I had an extreme emotional reaction. (Two impacts came from the shit drivers who rear-ended us, the third from being pushed into the car stopped ahead of us. I don’t know which rear-ender shoved us into it.) And I didn’t move until I was told to get out of the car.  Later, when we were told to move to a side street, I again stayed in the car; I had no interest in what was going on.

But that’s not the same as having no memory or awareness of what happened or what is going on. I don’t know why this myth of memory or awareness loss persists, especially when the injured person remains conscious, or perhaps the loss in me was a nanosecond, but certainly imperceivable to me or anyone else.

I will say though there is definitely diminished perception and awareness to the point that you may see but you don’t really take in what you’re looking at. It was like the day six years after my injury when I stood at Bay and Bloor (an intersection I’m very familiar with and had seen many times in the previous six years) looked around, and suddenly I was seeing it as if for the first time in six years. I just stood there and gawked.

The amount of axon damage is related to the force of a hit and — more significantly, scientists surmise — the direction of the hit to the head. One that catches a person on the side of the head, twisting it sharply to the side, creates greater shearing force than a hit that rocks the skull from front to back.

During impact #1, I was staring straight ahead through the windshield of the car. Because I raised my left hand to cradle my neck, during impact #2, my head was slightly twisted to the left. So I had two directions of force on my brain. Peachy. It’s probably what created more diffuse injuries than would be expected in a straight back-and-forth slamming.

When the brain rattles from a hit to the head, cell membranes open up and a biochemical cascade washes through the tissue and disturbs its precise chemical balance. Specifically, potassium floods out of the cells, while calcium rushes in.

The cells desperately want to restore balance, which requires a huge amount of energy. For a healthy person, this is an easy thing do. But a concussion mucks up a host of other chemical processes that affect how the brain produces energy.

The first problem is that calcium, in high levels, is toxic to brain cells. Normally, the brain would lower calcium levels by drawing on the power of mitochondria— the energy factories found inside all cells. But as the mitochondria work to reduce super-high calcium levels, they clog and don’t produce enough energy.

Let me tell you the fatigue from the brain injury and from treatments to heal it is unreal. Even brushing teeth can require a nap afterwards. (Makes you not want to brush your teeth, aside from just forgetting in the first place.) Everyone in brain injury care knows about the fatigue. But this is the first time I’ve heard a possible scientific explanation, though I had known it was something to do with the mitochondria (university studies come in handy!).

However, I decided to look into this research. So far Dr. David Hovda’s investigative work on the neurochemistry and treatment of  concussion seems to focus mostly on rodents or animals. That means this work is in its infant stages. That means he cannot mimic actual injuries that humans sustain in car crashes and sports, but at best approximate them with “controlled cortical impacts.” His work is exciting, but not yet applicable to humans in any real, practical sense.

At the same time, the brain is still seeking energy to restore its chemical balance, so it sends out an emergency signal for more glucose. Usually, glucose — the brain’s primary fuel — is carried to needy areas by an increased flow of blood.

But a concussion affects this process, too. After a hit, blood vessels constrict, making it difficult for blood to carry glucose to where it is needed most.

Oh my God! My desire for sugar — for things like pop, which I hate, or cookies — gets extreme whenever I do mental work or undergo treatments. (Otherwise my desire for sweets has dropped.) This connection became very clear to me when I began brain biofeedback treatments. After each session, I had this overwhelming desire to drink a can of ginger ale with sugar in it, not artificial sweetener. I could not resist it, and the fast downing of sugar always made me feel better. It was the only time I ever wanted to drink pop. Even today, if I’m more tired than usual (and I am always, always tired), and even if not hungry or needing food for my body, eating something will perk me up rather obviously. And, on a side note, doing things that increase blood flow helps too.

I have tried to discuss this with family, friends, health care people, anyone who can help me figure out how to feed my brain without feeding my fat because it is definitely not an empty craving but one that comes from my brain’s real need and because responding to my brain’s demands results in weight gain. This is also on top of the fact that brain injury does throw your internal functioning out of whack, something doctors simply don’t recognize.

I haven’t had much success.

I think someone has to come up with a way to get the body to send the glucose straight to the brain and bypass the fat stores — because the rest of the body doesn’t need it, it will snag the glucose and stuff it into the fat cells. The brain has to compete with the body for that glucose.

Dr. Hovda is on the right track perhaps with his ketogenic diet study, but again it’s in rats. No one seems to have studied this in humans, and certainly the medical community doesn’t even discuss diet in relation to brain injury, never mind the kind that can feed the brain sans feeding the body.

People who have a concussion will describe being overwhelmingly tired. This weariness is actually a neural fatigue, brought on when the brain doesn’t get enough fuel and must struggle to perform. Pushing through the fatigue is one of the worst things somebody with concussion can do.

“During this energy crisis, the brain wants to shut down and be very, very quiet,” says Hovda. “If you exercise the brain, or if you experience another brain injury (during this time), you will prolong the symptoms associated with concussion and extend the period of vulnerability.”

Well, I don’t know if we really know what the cause of the fatigue is. We understand its symptoms, have a visual concept of how it must be, but the mechanism details for fatigue in humans is not known. His statement that “pushing through the fatigue is one of the worst things” is theoretical, based on rat studies. How can he possibly know for sure?

If you don’t push through the fatigue, you’ll (a) be criticized and (b) won’t get the help you need. They talk about the energy crisis in this article as if it’s short term. It isn’t. It lasts years, decades. Sure, it gets better. But it doesn’t take much to land you on the couch and in front of the TV again.

Ironically, the one thing that caused a massive energy drain in me — the brain biofeedback — gave me way more energy in the end than the do-nothing approach had for the previous five and a half years.

Also, we know that basal metabolic rate consumes the vast percentage of our energy. In other words, we consume most of our energy needs just by living. Exercise adds very little to our energy consumption. Have you ever checked out how much effort you have to make before exercise makes any sort of indent into increasing your energy consumption — aka calories burned? Five minutes a day ain’t going to do it. Thirty minutes will. So why would the brain be any different? It’s already consuming vast gobs of glucose just to run your heart, lungs, digestive system, hormonal system, eyeballs, hearing, touch, taste, smell, etc. etc. How much extra energy does it take to think? To read? To write? Is it the same as exercise, that is, five minutes of reading isn’t going to make much diff but thirty minutes  will?

I know from experience that in the beginning, five minutes of reading was like studying university texts for five hours. But does that mean in order for your brain to heal, you should do nothing? Isn’t it more likely that it means you need to start slow, build incrementally, be patient with yourself until you do reach normal levels of metabolic, hormonal, and cognitive functioning in areas like attention and memory. It seems strange to say that you’ll perpetuate the potassium-calcium cascade as long as you do anything but stay in bed because if that’s true, your brain will probably die in no time. That makes no sense.

This reminds me of the old adage that after surgery or when injured, you should stay in bed and rest. But we know now that the best thing to do with post-op patients is to get them up and at em practically as soon as they come out of the anesthesia. We know that moving the operated on or injured part — wisely of course and incrementally — accelerates healing. So why not the same for the brain? It is part of our body after all.

Currently, the only treatment for concussion is physical and cognitive rest. Doctors rely on standard neuropsychology tests to help determine the severity of an injury and whether a concussed brain has healed.

That’s old knowledge. Scientists in the US have already learned that progesterone has a positive effect, at least in severe brain injuries. They also know there are hormonal imbalances, like cortisol, for instance. Plus naturopaths already know that omega-3 fatty acids help the brain function better, as does physical exercise. Smart resting is good, but doing something to help the brain recover is better. Why do they not consider studying progesterone in concussions? Why not consider increasing omega-3 fatty acids in the diet because we know those are important in brain function? What about suggesting temporary increase in cholesterol in the diet to help regrow damaged myelin sheathes or research ways to regrow neurons such as what Dr. Michel Rathbone is doing? Or how about prescribing an exercise plan that takes into account the fatigue and sympathetic-nervous system issues?

But that would require some thinking, spending time with patients, and talking to psychologists on physicians’ part, and God forbid they do that.

As for standard neuropsych tests — pffft is what I say. All those tests said I was hunkey dorey. Yet I had to be reminded to brush teeth, feed the dog, make lunch before my stomach started screaming, make phone calls, what to say when I called people. Yet I slept for 12 hours. Yet I found crowds and groups overwhelming and would hide in the bathroom. Yet I couldn’t follow or remember what I was reading. And so on. There was way more dysfunctionality than that. And I’d get stupid comments from friends like “I never remember what I read either” — oh, so that’s why you cannot learn anything and why you cannot build on your professional knowledge, eh? Not.

It’s easy to ace those tests, not so easy to function in the real world. It’s even easier to ace those tests when they’re given to you repeatedly, as psychologists well know, as was done with me. Seven times in seven years. Those tests will never tell you if the concussion is fully healed. Idiots.

While the majority of those who suffer a concussion will get better in one to three weeks, about 15 to 20 per cent of patients will have symptoms that linger for months and sometimes years. Scientists suspect these patients may have a genetic predisposition that makes their brain more vulnerable to concussion.

The specialist who diagnosed my mild traumatic brain injury (mild! Such a misnomer!), got a complete history of my past. Although it had been nine years since a previous car crash and I had not had any clinical signs of a concussion, he said the long-term ramifications of that impact predisposed me to a brain injury.

So I’m not so sure about a genetic link.

I’m much more sure of all those little bumps on the head, those back-and-forths in fender benders or sports hits, setting you up for greater injury when you’re hit hard. But we don’t remember all those little ones, and when your memory is screwed, even less likely to remember and tell the docs.

If I’m ever hit again, my chance of severe brain injury is now much, much higher because of my previous injuries. Yet I wonder if all those brain biofeedback treatments and my regular use of audiovisual entrainment as well as acupuncture treatments has put me back into normal risk territory? I hope so, and I pray I never find out.

Researchers are also trying to figure out why only some people are affected by an accumulation of concussions by teasing out the link between repetitive injuries and chronic traumatic encephalopathy, a progressive degenerative disease that seems to mirror the biology and symptoms of Alzheimer’s. Connections have also been made between accumulated head trauma and devastating diseases such as Lou Gehrig’s and Parkinson’s.

This probably has a lot to do with what kind of treatments they had received or not for each injury, whether they had support or not, what their bad habits are, what kind of diet they had before and after injury, if they were given an exercise routine appropriate to their injury, if their metabolic and internal functioning issues were recognized never mind addressed. There’s an awful lot of stuff that affects long-term outcomes, stuff that the medical and research community are ignoring, stuff that’s right in front of their eyeballs if only they’d open their lids.

 

Essay

Tax Relief in Canada for Those With Disabilities

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You’re an adult, you’re tripping along, living life, working hard, and then the universe sends you splat, and suddenly you’re seeing doctors, suffering, in pain, not working, and watching your bank account slide into the red. While you may be receiving good help for what ails you, you’re probably not getting good help for what ails your bank account. I’ve learnt recently how few know about Canada’s disability tax credit; worse, I’ve also learnt how community care workers don’t know the difference between net and gross income (!) or between taxes and government support programs. With such gross ignorance in the professional population, how then can people with disabilities in Canada know what’s available to them, especially those with brain injuries? Well, for tax information, this blog post will help. I hope. I won’t be covering government support programs, which have their own separate application programs and serve a totally different function. Tax credits and benefits are strictly to help income-earners reduce their tax load. Government support programs provide direct financial support for those who can hardly work, if at all.

To begin: after, or while, you’re in the process of applying for CPP Disability and/or your province’s disability support program (in Ontario it is ODSP or Ontario Disability Support Program), it’s also a good time to look at tax relief.

The first and biggest one is Canada’s Disability Tax Credit Certificate or Form T2201. Basically, if you’re disabled, working or earning an income above the basic personal exemption, this will help you reduce your tax load. Remember CPP disability is taxable so you may not be working or working minimally but will still have to pay taxes. (This is so unfair, I think. But the government gives with one hand and takes back half with the other as they did to me with my first CPP cheque. The rest not so bad. Still…) But if you, the disabled person earns nothing or so little the tax credit doesn’t apply, then your spouse or common law partner or the person supporting you financially — Canada calls that person the “support person” — can use the disability tax credit to get relief from their taxes. And as a third option, you can both use it if you’re working enough to need some of the credit but not all of it. What you don’t use, your support person can.

You fill out the basic information, and you take the form to your GP or primary specialist who knows your disability best. They then fill it out, after which you mail it off. Do NOT mail it in the same envelope as for your tax return. You should hear back in 12 to 16 weeks. I’ll also say for those with brain injuries, this form will seem daunting, overwhelming, and not doable. Forget about that. Just focus on your name and address portion and let your most trusted doctor take care of the rest.

As a person with a disability, you’ll have medical and disability expenses. I learnt recently that there are medical expenses and then there are disability expenses, both of which you can claim. You can only claim medical expenses when they reach at least 3% of your net income. However, there’s a caveat. Not all medical expenses are eligible. Those vitamins your doctor insists you take and that do make you feel better are not eligible but prescribed medications not reimbursed by an insurance plan or provincial drug plan are. It is important to keep all your receipts (easier said than done I know when you can’t remember where you filed the darn things) not only for your tax return but also in case you’re audited a few years down the road. The same holds true for all expenses you claim.

In addition to medical expenses, you can claim disability supports that you need in order to work, study, or do research for which you have received a grant. There is quite a range of eligible disability supports from job coaching and note taking (something I definitely would need if I ever got to the point where I could study again) to voice recognition software. So it’s worth checking out.

There are many more credits and deductions that you may be able to claim. The government’s website has a full list and explanation of each one. I suggest you peruse it as it’s pretty extensive covering everything from spouses to caregivers to children to tuition.

Since people with disabilities are usually the poorest Canadians, you will probably be eligible for GST and/or HST credits. These are tax-free quarterly amounts intended to reimburse you for goods and services taxes paid, and they are paid directly into your bank account — whenever possible have the government deposit funds right into your account rather than mail you a cheque. First off, you won’t have to remember to deposit it. Secondly, you have limited energy or time, so don’t spend it on stupid little chores like depositing cheques when computers can do that for you more quickly and safely.

Also there are a host of things that are GST/HST exempt. Check out this list to ensure you’re not paying unnecessary sales tax.

If you are under 49 years old* and receive the Disability Tax Credit, there is a savings account available for you: the Registered Disability Savings Plan (RDSP). (Some in the media say this is for parents to set up for their children with disabilities. It is but it’s also for adults with disabilities to set up for themselves. Children will benefit more only because they and parents can contribute for more years.) Basically, you open an RDSP at a bank and put in up to $1,500 per year up until you turn 49. And the government will match your funds and double or triple them; plus if you cannot contribute anything or have very low income, the government will deposit $1,000 per year. This is strictly a savings vehicle; there are no tax advantages. Anyone can contribute to your RDSP. However, you cannot withdraw funds — yours or the government’s — for 10 years minimum after you deposit else you will lose the government’s matching amounts. The idea is to save for your future, and the rules are in place to ensure you don’t take the funds out prematurely.

Not all banks are participating — it’s most disappointing to see that that great savings bank ING does not offer the RDSP — and of those few who do, only one seems to know what they’re doing. I suggest calling around before locking in with one bank. And, as well, because most banks offer a terrible savings rate, I recommend putting in just the $1,500 in order to receive the maximum matching grants and bonds, and then if you have additional funds put them in a Tax-Free Savings Account, which is not only more advantageous tax-wise, but will also give you greater choice in decent interest rates. And if you have more than that, put them in a safe savings vehicle that’s insured under the bank act. IMHO, these are not funds to put in stocks or mutual funds, but in vehicles that only go up, even if slowly. But you may disagree!

(*You will only receive matching government grants and bonds until age 49, but you can contribute until age 59. There are maximum contribution limits too.)

If your income is low, you have a disability, and your tax situation is simple, Canada will help you file your taxes through a community volunteer program. Just call 1-800-959-8281.

And finally Canada has the Working Income Tax Benefit for low income earners. There is also a disability supplement to this benefit. If you are eligible, then you may be able to apply for advance payments for the next tax year. In other words if you receive the benefit for the tax year you filed for it, you may receive advance payments for the following tax year. The government has a handy calculator (or try the online one) so that you can see if you qualify and if so, how much of a benefit you will receive. Very low income earners won’t be able to take advantage of this benefit, from what I understand.

The government has been slowly adding tax credits and benefits to help those with a disability but it has a long way to go. There is one particular glaring hole: no national pharmacare, vision care, and dental care program. Being able to claim medical expenses doesn’t help pay for medications, eyeglasses, and the dentist if your income is too low to take advantage of it. If you’d like to see more help, I recommend getting in touch with your MP. If you know of anything not covered here, please leave a comment and a link to where to find the tax credit or benefit. And remember whatever tax credits you receive federally, you also receive provincially because of the integrated income (and in some provinces, goods and services) tax system.

[And for Toronto homeowners with disabilities or low income, there are the property tax relief programs, the water rate relief program, the side door garbage pick-up program, and the snow shovelling program. You’ll either have to call 311 or your Councillor to get help with the latter two. Unfortunately, there’s no public transit program like Calgary has for those who find the TTC unaffordable.]

Essay

Nibbles of Chocolate

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“Never trust anyone who tells you they don’t eat desserts. You know, those people who look at you smugly when you offer your pièce de résistance and say, ‘Oh, I couldn’t; this dessert is too rich!’ We simply respond with, ‘We don’t understand the concept of ‘too rich’ — or ‘too chocolaty’ for that matter.” Susan Mendelson and  Deborah Roitberg, Nuts About Chocolate

Amen to that! There is nothing on earth too chocolaty.

“This book is about obsession.

Once The Trellis opened, I enlisted the pastry chefs to create some devastating concoctions from chocolate, chocolate, and more chocolate. Customers oooo-ed over The Trellis’ Caramel Banana Chocolate Chip Ice Cream….But then came the dessert that broke the chocolate barrier — Death By Chocolate.

I discovered then that I was not alone in my obsession.” Marcel  Desaulniers, Death by Chocolate

No, you’re not alone Marcel! My obsession began the day a local shop-owner leaned over and gave my too-young self a small, plain-looking, dark piece of chocolate. I took it warily from his hand, gingerly put it in my mouth, sucked, and hit heaven. Like any right-minded kid, I wanted more. I’ve been addicted ever since.

Later, as an adult, when gorging on chocolate truffles, I used to say it was good for me just so I could legitimize my addiction. And then I heard that it actually may be good for you. Without hesitation, I looked into it. And then I wrote a three-part series on it, titled A Nibble of Chocolate (Parts One, Two, and Three). I invite you to check it out. Click on each of the pix below and enjoy!