Shireen Jeejeebhoy, Author &#187; Health

The Core of The GI Diet by Gallop: The Glycemic Index

It’s time to accept private health care clinics

My Health Care Article up on Canada.Com!

Shireen — Mon, 18 Apr 2011 19:25:54 +0000

Postmedia News, the news service that supplies content for Postmedia newspapers and websites, as well as canada.com, has launched an online election project at canada.com called “The Real Agenda.” The idea is to publish a wide range of voices from across Canada on what Canadians think our politicians should be talking about on the campaign trail for election 2011. And Postmedia asked me to contribute a piece on health care.

As my regular readers know, I’ve had way too much experience with the health care system in Canada. So my point of view comes from experience, not just what is theory or word of mouth. I’m very pleased to announce that my piece is now live on canada.com:

I like very much what they chose as the lift-out to appear under my photograph:

“I would never want U.S.-style medicine here, but the current Canadian way rewards the idiots as much as the geniuses.”

I hope you will check it out now and perhaps contribute your two-cents’ worth to this topic!

What A Holter Report Should Not Be

Shireen — Sun, 10 Apr 2011 19:00:28 +0000

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.

The Holter Monitor Experience

Shireen — Mon, 28 Mar 2011 15:30:40 +0000

I’ve always had a heart that behaves a bit oddly. I had a couple of Holter monitors to see why. But nada. They offered but did not recommend an invasive and yucky test; the results would get me nowhere as the test was still in the research realm. So we left things as they were.

Then I had a closed head injury, a kind of traumatic brain injury where the brain bounces back and forth inside the skull. My heart rate shot up permanently. And three years later, I had a Holter monitor done.

So you’re probably wondering what a Holter is. Patience! I’ll explain in a mo.

Unlike the previous ones, we discussed the results over a quick phone call because of SARS barring me from the hospital. I don’t remember the specifics except nothing changed.

Then four years later, another doctor noticed my fast pulse, put me on atenolol (a beta blocker), and a few days later I saw the cardiologist who ordered another Holter. (I had made an appointment to see him the previous Fall because my GP was not happy with my heart, so the timing was a bit of a coincidence.) He said don’t come off the drug for the test, and afterwards said, “just stressed” (no kidding!). Stay on the drug.

When my parents started to worry about my heart (like, they don’t worry about my health to my face, like, ever), I made an effort to find a new cardiologist. Did you know there are different specialties within the heart area? Me neither. Three docs and a Holter (on drug for that one too) later, I ended up with one who specializes in nerves to do with the heart. Yes! Finally the docs know what I know: the problem begins in the brain.

I have a sluggish vagus nerve. See a behavioural cardiologist. And change the beta blocker to one that includes an alpha blocker he said. But I never switched. He doesn’t prescribe; my GP was sick; my new GP had bigger fish to fry with me and told me just to stay on the atenolol. Alpha blocking by the new drug may be better in targetting the heart not blood pressure, but it fatigues as much as beta blocking. The atenolol was bad enough.

Life continued until the day my fore-feet turned blue and I stopped the atenolol. Holter time. Again. But this time, brain’s improved and I’m medication free.

So to a new place I go, a private lab this time. No hospital zoo with curtains for privacy; it’s quiet with private rooms. After many years of tests and physios/acupuncture, I know how to dress for these things so the tech and I aren’t endlessly waiting for me to reveal the relevant parts of my chest. I stand where ordered, and she wipes top and bottom of my chest clean. Twice. If you’ve never had this done, let me say the first step is OK, the second is like having a cat with a particularly rough tongue lick your very clean, dry, not moisturized skin. That done, complete with ouches and grimaces on my part, sorries on hers, she sticks on several electrodes swiftly, snaps wires onto them, and plugs the wires into a box connected to a computer. Several ECG recordings pop up on the computer monitor as does my heart rate in big red numerals: 125. So OK, I’m a little nervous. My left neck has been paining me on and off with the sunny, high-pressure system that has moved in over Toronto, and I know the increased pain that’s coming. Plus, yeah, OK, what will the docs find, is also in my mind.

Anywhoo, she checks the readings, returns to me, unplugs the wires from the box, whips off some of the electrodes, and leaves five in place. She proceeds to tape me up. You think having electrodes stuck on is bad enough — well, the tape ups the stuck-on-for-life factor. Two to three pieces of tape go over each electrode and the top part of the wire coming off it. She then plugs the wires into the Holter monitor’s wire. The monitor’s wire is long, thick, and grey. This monitor is rectangular on the side; the others I’ve had are rectangular on the vertical. This one shows the time in a thin window. I should’ve gotten a pocket torch (flashlight) to read the time. She placed the Holter in a black fabric case, with just the time showing, slipped a strap through the back of the case, and belted it around me. Phew. Previous Holters had been put in a purse-like case I had to carry over my left shoulder. They’re built like a physics textbook shrunk into a small purse-sized metal box, so you can imagine the weight and how relieved my neck is.

Handing me a folded piece of paper, she instructs me to write down the time — as taken from the Holter (which is two to three minutes off from the right time), not my clock — of what I was doing and the symptom when I feel anything. Also I am to note the times I exercise. I decided to add on the times I do my audiovisual entrainment and cranioelectrical stimulation sessions too. I can see them now, scratching their heads, going wha–? when reading those diary entries. Then dismissing them because that’s what usually happens: my symptoms and activities seem to have nothing to do with my heart, other than the rate rises quicker than usual when I begin exercising.

So they’ll find the usual SVTs (supraventricular beats, aka sudden zipping along of my heart rate), tachycardia (fast pulse, north of 130-140), bradycardia (slow pulse, south of 50), and my average will be…Well, that’s the rub. Hopefully, average will be in the 90s or less.

The whole visit took 11 minutes.

So I put up with the velcro-on-chest feeling for 24 hours, the wrestling with undoing the belt so I could go to sleep without the thing digging into my waist, the wires hanging down from under my shirt, the remembering to record diary entries, the velcro-on-chest irritation, the something-is-stuck-in-the-way feeling when I put my arms together in some of my exercises so I couldn’t do them properly, until it was time to leave the next day to return the dratted thing.

I didn’t rip off the electrodes. I began by peeling off the tape up to the electrode edges. Then, beginning at the loose edge of each electrode, if it had one, I pulled them off slowly, along with the tape. Some of the tape over one electrode overlapped with the tape over the next electrode. That was fun peeling off.

My skin looked OK, all identations and outlines. But tape glue remained in places, and my skin began screaming and turning red with pinpoints of blood. I really, really needed to put a pack of ice on it. But no time. The place was closing for the day soon, and I had to drop off the monitor else pay a $50 fine. So I slathered on my melaleuca-oil cream, dabbed on some more, and left.

I felt so liberated, so free, so light. Drop off took five seconds, and I was bouncing out the door, heading to a bookstore. This is my last time, I swear!

But as bad as a Holter is, 24-hour blood pressure monitoring is worse. Every two minutes, the cuff strapped round your non-dominant arm inflates, squeezing your muscles, taking your pressure. After 30 minutes, you’re ready to run screaming back to the lab to tell them to take it off now. They really should find better ways of measuring these things.

Side Effects

Shireen — Wed, 16 Mar 2011 13:30:35 +0000

Note: Do not do what I describe in this post. I wrote this purely to share what happened to me and as a warning about side effects — not to advocate doing what I did. Talk to your doctor about any concerns you may have about your medications before doing anything.

“Take this,” the doctor said, handing me a prescription for a beta blocker called “atenolol.” My heart was doing its usual 120 beats per minute, my chest was heavy, and this doctor was the first in seven years, since my closed head injury, to notice and offer me a solution. I’m not that enamoured of medications, but that week had been one of the worst ever since the injury, and I was desperate for help.

Twenty minutes after I took the first dose, I felt the feeling of stress leave me. What a relief.

We didn’t discuss side effects, which was fine with me. But not discussing even the major ones is probably as bad as those US commercials that list every possible side effect known to man.

Atenolol is not only taken to lower blood pressure and drop heart rate, but apparently medical students also take it before an exam to calm the nerves. Propranolol, another beta blocker, will do the same thing. But other beta blockers won’t, and it is that effect that became the most valuable to me.

Basically, my sympathetic system is in overdrive; my vagus nerve is sluggish. I’m in constant fight or flight mode and only deep breathing counters it. Temporarily. Unfortunately. The atenolol induces a feeling of not being in fight or flight and mitigates the effect on my heart. Plus it gives me a two-hour window of good energy in the evening.

But I didn’t know until last month that beta blockers have a plethora of side effects.

The thing with side effects is that they may come on at the time you take the drug or slide up on you years later.

Atenolol (like any beta blocker I understand) can cause fatigue. When I first went on it, the fatigue from my brain injury was so great that I didn’t much care about this one side effect I knew about. I didn’t feel it. Then as my brain healed, I began to notice atenolol’s fatigue side effect. Big time. This drug can knock you out.

Sure, it’s good to slow your heart rate into normal territory but is it worth lying on the couch for hours?

After starting my “hypothalamus fix” late last year and having great results, I began to ease off the atenolol slowly, knowing doing this in winter time would be tough. Winter is when I take my highest dose of the beta blocker, summer the lowest. (Don’t ask me why there’s a seasonal variation in need – I don’t know and the docs can’t be bothered to figure it out.) Then this past January, early February, I developed some weird skin problems, and I felt like a virus had hit me. Then my right forefoot turned blue. I freaked. Gangrene doth cometh, was my first thought. I saw a dermatologist who listened, spent time examining my skin patches and feet, and wrote that I had Raynaud’s phenomenon. When I googled it, I discovered that this can be secondary to atenolol. Whoa. This information motivated me to stop it immediately.

On the advice of one of my cardiologists, I had experimented with the best times to take atenolol and settled on supper time. (During the winter, I also took it as early as possible in the morning, but not this winter, not after I began my “hypothalamus fix.”) On the day I read about Raynaud’s, Friday, March 4th, I skipped a dose. Twelve hours later my foot regained its normal colour. I decided to stay off the drug.

When I finally got the courage to tell my GP, he asked me if I wanted blue feet or an irregular heartbeat. I said my heartbeat was fast, not irregular. I had long since been discharged by my last cardiologist back to my GP. And so he ordered a Holter monitor to be sure. This will be my, um, fourth? Fifth? I hope it’ll be my last.

Anyway, once off the drug, the surprising thing was my heartbeat did not climb back up to its constant pre-atenolol rate of 120. At first, it climbed higher for several days in a row, going from 80s to 90s to 100s to 110s then it settled down into the 90s. At night it dropped into the 80s or 70s, a good thing. Heart rate and blood pressure are supposed to drop at night. My blood pressure settled down too after a few days to about 122/84 – suggesting there was a bit of a rebound effect from stopping the drug. I also developed a case of nerves about four to five days after stoppage. Another rebound effect, for it went away after two days.

Then a week after I stopped the atenolol, my memory took a leap forward. I remembered the chapter titles of my book Lifeliner, something I’ve never been able to do. Ever. A day earlier, someone commented that I was quicker. And thinner. That was because water was coming off me (and boy, did I know it). Who knew beta blockers cause water retention? Most astonishing of all was that on my first day off it, I didn’t once long for the couch. The next day, Sunday, I didn’t take my usual hours-long nap. Monday, Tuesday, Wednesday, Thursday, and Friday, I didn’t think constantly, from about one or two o’clock on, like I usually do, about lying down, resting, taking a nap. I didn’t have to self-talk to keep going for a couple hours more. And now over a week after I stopped the beta blocker, my sleep patterns have changed and I’m writing more.

Neatest of all, I got spit.

I have also been liberated from the bondage of medication timing. As I mentioned earlier, I had to take the beta blocker at the supper hour. I also had to take it on a full stomach or with Gaviscon, and I couldn’t delay taking it by more than a half hour, an hour on the outside. It was also not a good idea to take it early. Now I’m off it, not having to time my supper and increased-fatigue time is, wow, mind blowing. When I began my “hypothalamus fix” I timed the evening CES Sleep session to begin a half-hour after the evening dose to minimize the atenolol’s fatigue side effects. I no longer have to do that. I can clip on the CES device at a time better for me. More mind blowing. It’s been over a week since I stopped the atenolol, and the behavioural side effects it induced have yet to go. But they are shifting.

The thing is why when I developed these skin problems, and the specialist identified Raynaud’s, did no one immediately think “side effect”? This is what happens to seniors: they’re given a drug; they develop a problem; the doc gives them a new drug to counter the new problem; and no one thinks side effects. Before you know it, the poor person has a basket of medications to take, and their life is all about TV watching and multiplying health problems.

When diagnosing a new problem, look to the simplest solution first – side effect. In me, this was probably masked by the fact that two new problems hit me at once. We don’t know for sure what one of them is, but given how I felt, I’d say it was a virus. The other was definitely a side effect, and it happened to manifest itself at the same time as the virus.

At 3:00 on the Friday morning, I finally figured this out. I woke up suddenly, worried over my blue forefoot, and began to research both the symptoms and Raynaud’s on credible websites, and most importantly, I took the time to think through my new skin problems and the information I had gathered. That’s what’s missing in our health care: doctors taking the time to think through the patient’s complaints and what they’re pointing to. Sometimes it requires extra research and then calling up the patient when they find an answer or some clues. But why would they do that kind of heavy thinking when in their offices with the patient in front of them, they don’t even take the short amount of time needed to consider side effects? When it’s easier to throw a new drug at the patient for the “new complaint”? Just like it’s usually easier to prescribe a pill than find alternative therapies that are safer and more effective but require time with the patient. Or perhaps they are aware it may be a side effect but decide for the patient, sans discussion, that it’s worth it and better to counter it with a new medication.

The other thing I’ve discovered is that the atenolol was masking some aspects of my healing from brain injury: memory gains, energy gains, processing speed gains, productivity gains, heart rate improvements, chest heaviness improvements, inner organs working (more) normally and efficiently once again (man, is that ever nice), among others. The suddenness of these gains is either coincidental to me stopping the atenolol or a direct result. It makes more sense logically to me that it’s the stoppage.

The moral of the story: remember why one is put on a drug in the first place. If I develop a new health problem, even years later, look first to see if it’s a side effect or interactions of several drugs – a process taking minutes – then if me and my GP can rule that out, look to other possible causes. The KISS principle applies to medications too.

I highly doubt I’ll go back on the atenolol, whatever the Holter monitor results are. I ask myself: is length of life more important than quality? Is living a few more years worth it if the price is having to will-power my way through tasks and spending hours on couch time instead of on writing time, reading time, socializing time? For me, the answer is no. It is not.

Bugs and Brain Injury

Shireen — Mon, 14 Mar 2011 10:12:53 +0000

“Remember, when you have a brain injury, everthing takes longer to recover from,” she said to me.

I didn’t want to hear it, though true. When I first became injured, I had a series of homemakers and a series of colds. In the beginning, when the homemakers came from VHA, they were professional. They came in, whipped on their working coverall, and washed their hands, complete with soap. Later, when they came from another place, washing hands was, well, not exactly par for the course even though they went from one sick person to another injured person all the day long. And I got colds. And they hung on.

I didn’t ever remember colds hanging on that long before I was injured.

Or taking weeks to recover from.

Worse, every time I finally recovered, I got another. And every time, I got one, I became so unutterably tired, I could not exercise, not even the little I did as my shoulder and neck sprains and strains healed. And every time I got a cold, my brain-injury healing progress became retarded; my cognitive functioning dropped. The couch and TV became my daily friends. I became fearful of colds and other infections, especially the year I was laid so low, my progress turned into regress.

Yes, when you have a brain injury, even a cold will take you out for weeks. It will lay you down, and only a month after it leaves, will you be able to rise again. Slowly.

And so after many, many months of remaining virus-free, I was not happy this past January 24th when I picked up some sort of weird bug that made patches on my skin, burned my hands, and pained my feet. Then turned into endless peeling, of revealing tender new skin, yet continuing to callous up the old. Weird. And I absolutely was not happy to be reminded of this maxim, that to be brain injured means slow recovery from viruses and bacterial infections too.

But what can you do?

Rail against the inevitable or just go with the flow? This time I kinda did both. But a miracle happened too, and perhaps it was of my own making, from all the work I had done with my “hypothalamus fix.” Unlike previous infections, this bug did not stop my exercise routine cold. Sure, my muscles refused to do the full work, but they did not entirely grow so weak that I could not do even one second. And my mind, though it regressed cognitively and emotionally (meaning my affect went back to being unresponsive), did not completely go blank and seek TV or endless naps.

Unfortunately, that did not affect my recovery period. The virus left me over a month ago. I woke up one Friday morning and did not feel that rundown feeling of something infecting me. But still, it was a month before I felt back to my old self. Unfortunately, all the tasks I had dropped when I became ill remained waiting for me, and the passing of weeks had only grown the pile. That was another familiar frustration, of seeing the things left undone and wondering how I was to do them. Fortunately, this time I had help. My therapist.

I am better now. Daily, I continue to take Cold-FX, the one thing that reduced my susceptibility to infections. I continue with my “hypothalamus fix.” And I try to remember to grease up my palms and fingers with cocoa butter and wear gloves so that my hands can return to their old sensitive but tough selves.

Improvement is Not Meant To Be Relentless

Shireen — Thu, 03 Feb 2011 01:57:32 +0000

“Improvement is not meant to be relentless.”

Yes it is.

“It’s OK to have a setback.”

Wise and common sense words from my GP (family doc), but oh do I ever wish improvement was relentless, a never-ending path upwards to perfect health.

January is a tough month, not only emotion wise with its reminder of what started me on this trail, but also weather wise with its furnace-taxing cold – for my body seems to have a wee bit of trouble regulating its temperature. Still, I had thought that between my writing, rest, and the “kindness of strangers and friends,” I’d made it.

I thought too soon.

The thing about having a chronic illness, injury, or condition, is it doesn’t excuse you from also catching a bug (or developing some other chronic illness). Unfortunately it does mean said bug hangs around longer and leaves you fatigued longer. I have become rather wary – and weary – of colds for that reason. This time I don’t have a cold. Instead, I have something bugging patches here and there of skin, burning, itching, reddening. Fun.

So I get in to see the dermatologist in one day. Yes, you read that right, fastest referral ever in Canada. I wait in the waiting room. I go in. I get the usual resident who asks the prelim questions – it is a teaching hospital after all. He leaves the room to relate all to The Big Cheese before The Big Cheese comes in to see me himself. I snooze, but napping is interrupted as the resident keeps popping in with more questions. Unusual. Suddenly, The Big Cheese is coming in, so is the resident, so is, uh, how many are there?

You don’t mind the team coming in, do you? The Big Cheese asks me. They all want to see.

Uh, sure, OK. It is a teaching hospital.

They commence inspection, big eyed wonder from the residents, only the female in the team thanks me later for allowing them to see. The Big Cheese produces his magnifying glass, and one by one they inspect the capillaries around my fingernails. I look at my nails later surreptitiously. They look OK, well, apart from the fact my entire hand is burning! Mechanic’s hand, they call it. Yeah, I look at my hands, they do look like they’re the hands of a mechanic not a writer who’s obsessive with the moisturizer.

The Big Cheese starts talking biopsy, picks up his pen, circles bits on the inflamed patches on my upper back. Whoa, back up there, who said biopsy. I thought this was going to be the usual, uh-huh, uh-huh, pat, pat, out the door ASAP kind of appointment. These guys are listening and inspecting and asking unexpected questions (which in true brain injury fashion probably means I’m answering as I am in that moment, not how I generally am). And then taking bits of my skin and asking for vials and vials of my blood.

As I’m processing this, the first resident asks if he can take pictures. It’d be really good to show the others; they’ve never seen it before.

Uh, sure, OK. It is a teaching hospital.

He whips out his iPhone, clicks, shows me the pix he’s all gaga about, and I try not to go ewwwwww. Did I mention that as a teen when I used to go through my Dad’s Harrisons, I always skipped the skin disease sections? They totally grossed me out.

So now I wait.

I think it’s a swizz. Us chronically ill and injured should have a get-out-of-infection-and-other-disease card. But we don’t. So I gotta just ride it out, go with the fatigue, try not to get frustrated that whatever this is has thrown my writing into the back seat, and rest till I’m better and can take back the wheel of my life and once more put my writing up front where it belongs.

Problems in Perceiving Leads to Death and Destruction on our Streets

Shireen — Wed, 12 Jan 2011 16:41:29 +0000

Perception.

“1 a the faculty of perceiving.” Canadian Oxford Dictionary

Perceive

“1 apprehend, esp. through the sight; observe. 2 apprehend with the mind; understand. 3 regard mentally in a specified manner.” Canadian Oxford Dictionary

Perception has been in the news this week, although many mayn’t have seen it that way. In Arizona, a man shot a number of people killing 6, wounding 14, including Congresswoman Gabrielle Giffords, his rather skewed way of perceiving the world urging him on. Later this week, in Toronto, yet another confrontation occurred between a man and the police; the man couldn’t see why he had to get out of the car, and it took them two hours to convince him. Luckily, the police didn’t shoot; instead they sought the guidance of a forensic psychiatrist. When the man finally opened the car door, he had to unfold himself as he is an imposing 6’7”.

The former young man was identified by his college and friends as “obviously disturbed,” possibly due to brain damage after alcohol poisoning, but no one troubled enough to help him get proper care. I heard on CBC radio this morning that Arizona has the second-worst health care for mentally ill people in the US, so maybe it wouldn’t have mattered anyway. The latter Toronto man had recently had his meds changed but a patient advocate had told him that he didn’t have to take them. It was his right to refuse, and I heard that his doctors had no clue if he was taking them or not. Behind both news headlines, the brain damage or illness interfered with the men’s ability to perceive, and so we have dead people at one end of the scale and a closed-off street and intensive use of police resources at the other end. Both cases illustrate why putting rights and privacy ahead of health and safety is deadly stupid. It’s predicated on the idea that people with damaged perception are as capable of perceiving – observing, seeing with the mind, understanding – as those with undamaged brains. Dumb.

Not everyone who is mentally ill or has a brain injury has damaged perception. Not everyone has complete damage. But when someone who is raving about grammar causing the ills of the world, it’s pretty clear their ability to perceive is royally screwed up. When someone obeys police slowly, as in the recent case of the brain-injured man kicked in the head by the beyond-stupid-going-into-criminal-assault-territory RCMP, it’s clear their ability to understand may still be there but is in slow mo, and we must give them patience. It’s the human thing to do. When a person diagnosed with schizophrenia or major depression or a brain injury does not see themselves as ill, there’s a perception problem. Some identify it as self-awareness, but that’s just one part of the ability to perceive. If the ability to perceive oneself is diminished, then that may also affect or be concomitant with diminished ability to understand body language, verbal communication, written language of others. It makes it difficult to talk to such a person, to make them get it.

Then there’s the ability to perceive one’s own body. I had the oddest experience when I first sustained my closed head injury. When I lay down for physiotherapy, I was convinced I was crooked: head facing one way, legs the opposite, arms not straight. Yet the therapist never shifted me so I thought, well, I guess being crooked is OK. I finally asked her if I was straight. She said, yes, like what a weird question to ask. I decided then that when I felt crooked, I was straight; when I felt straight, I was crooked. That has gotten largely better over time. Although that was weird, as in freaky weird, my inability to perceive situations around me was more problematic. You see, my perception, well, felt normal to me at the time. Yet each month when my perceptual abilities improved, I’d look back and go, where was my head last month?! But in that month, I’d think, OK, I’m healed now. Then the next month realise, uh, no, not really. Still, my ability to perceive wasn’t completely damaged. I often had no problems assessing situations for what they were, and that would be confirmed by the professionals. So how to know what was skewed, what was not? I finally got to the point that I decided I would look for cues from other people or take my time before assessing anything before I tried to make a judgement based on my perception. When the months finally came where there was no change and none of my perceptions differed from the professionals, I knew that that part of the brain injury had healed itself. Funnily enough, from the beginning, my self-awareness remained intact. I know because everyone who worked with me from occupational therapist to psychologist raved about it. It got a bit tiresome actually. Apparently, it’s a rare trait to have when a person has sustained a brain injury. Even after months and months or years of rehab, of working with professionals and family who tell the person that they are having x,y,z problem, the injured person cannot perceive their sight or reading or walking or mood problems.

I don’t think you have to have a mental illness or brain injury to be missing self-awareness. It amazes me how so many go through life without once putting mind to self. At worst it may be annoying to the people around you to be so blind to yourself. But if you have an illness or injury, lack of self-awareness at best leads to a wasted life of bad health and at worst to dead people. Without self-awareness when you’re sick, you can’t get the help you need and you can’t understand how treatment is helping you. So why would you stick with treatment? Why not put rights ahead of this “awful” medication with its side effects? Without being able to perceive the people around you, what they’re saying, what they’re meaning, you can’t have rational conversations, you can’t sustain meaningful relationships, you can’t hold down a job, and you will hear them say or see them do things they’re not. That’s when you most need to rely on the people around you to get you back to health. Some are lucky enough to have such people, but the system has interfered mightily with people helping people.

But then I think of the man whose mother said he had talked himself into a brain injury. Oh-kaaayyyy. And then I think of the neurologists I’ve met whose ignorance of cognitive deficits is breathtaking and other health care providers stuck in a rut of non-healing methods for brain injury, whose patients clearly are not getting the best care. It’s family members and health care professionals like that who have led to the rise of patient advocates and a mental health care system that puts rights above health and safety. That has led to masses of sick people living homeless on the streets or in hidden desperation in rooming houses or apartments like at St James Town. And it has also led to the collective washing their hands of their responsibility to the vulnerable among us, for all the healthy see are raving rags and people in jail. The government will take care of them.

The perception problem lies on both sides.

When we learn to perceive the problems in perceiving, “ours” and “theirs,” we resolve this impasse and take care of those who need our Good Samaritan instincts.

A Friend’s “Accident” Brings it All Back

Shireen — Sat, 01 Jan 2011 18:07:43 +0000

I got the news yesterday, oh boy. My friend got banged up in her car. Stopped at a red light. Teen boy, a typical teen boy I bet, the kind who knows everything and is immortal, texting and driving. Right into her. Shoved her car into the one in front. Car totalled. Her neck and shoulders (seatbelt injury) strained and sprained. Mild concussion. Her kid too. Insurer already doing the deny, deny, deny mantra, even in replacing her old car. Hearing the news, it was like reliving the emotions and pain of my own crash and the battles afterwards. But I have to remember that though injuries are similar, not everyone gets fucked for life.

Some recover quickly; some more slowly. Some get the help they need when they need it; some think they have gotten it or don’t realise they need it immediately. And if it’s your first time, unlike me, you have a much better chance of getting better and rejoining society, doing such things as full-time work and going out with friends. Of all the consequences for me, the worst is not being able to rely on my own health, my own stamina so that I can make plans and know I’ll be able to get them done. Without that ability, you can’t work full time, or even part time. You can plan up the whazoo all you want, but when your body says nap time, crash-on-the-couch time, willpower and plans won’t prevail. You have to cancel commitments, and it sucks. Worse, when you have a brain injury, the abilities we take for granted, that we don’t even think about, abilities such as being able to set goals, schedule the tasks, make them happen, get up and go, take so much effort to regain, if you’re lucky, and need a lifetime of assistance and compensation, which will never completely replace what you had. In other words, you really have no control over your destiny because that which gives you control is gone. Poof. In a cloud of selfish, self-righteous pricks who behave as if the road belongs to them and no one else.

I know clearer than ever on this first day of 2011 – each year, it’s like the fog lifts just a little bit more – what my goals are, what I’d like to do. But how, is the question. Where will my energy come from? Where will the stamina required? How will I ever be able to decide on what comes first or more likely second, as I think revising my 2010 NaNoWriMo novel comes first. But beyond that, what tasks are more important? How do I balance want to do with need to do, and how do I distinguish between the two? And the person who guides me, will she be able to help me keep my long-term (ie, 6-month) goals in mind while I work on my weekly priorities? They kinda got lost in 2010. But then, because of her help, I’ve never been so functional, so productive in setting realistic weekly priorities since that dreadful innocent-looking day 11 years-less-than-2-weeks ago.

That’s what hit me the hardest when I read my friend’s email: how little we understand the hell that is to come. We think these are minor injuries, just sprains and mild concussions. They’ll go away. Get a little bit of treatment, work hard at rehab, and in no time, we’ll be back to work, back to school, back to our writing/music/office drudgery. But as the weeks unfold, the horror of a radically changed life reveals itself. The future turns from lush pastures which we can take care of and frolic in, to overgrown grass, malicious weeds, and endless thick, grey clouds. Yet still we do not see the fullness of the horror. No, that takes endless tries at doing the things we used to do so effortlessly, thought-lessly, and failing every time. That takes the scary view of a dwindling bank account. That takes the day we dip our toes into a normal work scene in a year we think everything is getting better and discover we no longer have the cognitive skills to navigate meetings and that unless we get real treatment, we’re fucked for life. And there is no real treatment in the medical arena, not for “mild” closed head injuries aka concussions. That is terrifying to face.

That is why I don’t understand how people can live that and not go haring around looking for answers, like I did. Desperation drove me. It was that simple.

What I am discovering is how unusual I am in being able to connect dots and seek solutions, in not settling for a desperate life, in not caring where I find advice or help from, as long as it makes logical and evidentiary sense. I learnt of someone recently who had banged their head and injured their neck, but had never connected that (friggin’ obvious) dot to their neck pain and constant migraines. Nor did their docs. Seriously. I also have heard many a complaint about muscle pain or muscle injuries, yet when given the knowledge they need to get help, won’t seek it – unless their doc says so. But then they do have to go to their GP, and they do have to have a GP who knows something about soft tissue injuries and that there are specialists out there called “physiatrists” who know exactly what to do for soft tissue and nerve damage. (I lucked out, I think, with mine. He knew all about them, being the official doctor to a boxing team years ago.) Of course, as long as the general non-rich population doesn’t have access to the kind of aggressive, daily treatments athletes do to overcome soft tissue injuries, we will never maximize the potential for full recovery anyway.

I also have spoken to people with brain injuries/strokes or their caregivers, who have seen the remarkable improvement in me, despair at their own difficulties, but will not immediately pounce on the knowledge I’ve gained, the knowledge I share with them, and try to make things better. I understand why people with brain injuries don’t – it takes years to make a decision – but not why those who care for them don’t. They have no such cognitive issues. My therapist told me recently that most people don’t want to listen to advice; so much so was that her experience, that when we came to that step in the problem solving method she was showing me, she was about to skip it when I said, hey, wait a minute, that’s important.

I did not get to where I am today on my own. I did it cause I listened to advice and sought it wherever I could, whenever I could, and took the good stuff, while ignoring the BS. Just because there are an awful lot of people who live with their heads in the sand and say I should just get over it or it’s been long enough now, doesn’t mean I should listen to them.

The biggest problem I find in seeking advice is many don’t have it, don’t want to learn in order to share it (if you have a brain injury, you need people around you willing to learn the stuff you cannot), don’t want to stick around for the long road back. The one person who has, the one person for most of us who does, is my mother. (I heard of one whose mother said you’re thinking yourself into a brain injury. Lovely.) It’s been mostly me teaching her, either directly as I share or indirectly as she’s learnt to adjust to my, um, quirks. But lately she’s been taking that knowledge and using it to help others or even help me in my dealings with others. Effing amazing. Proves my personal university-era thoughts: age doesn’t fossilize your brain. Inertia and fear does.

The Hypothalamus and Brain Injury

Shireen — Wed, 13 Oct 2010 01:20:49 +0000

The first part of this series is how I came to look at the hypothalamus. This post is more about general principles of how the hypothalamus works for those of us who aren’t physiologists, rather than a scientific treatise. However, I’ve included links for those who want to know the mind-bending details. I’d also like to note that knowledge of the hypothalamus is limited, contrary to the confident writing of many an author. As I noted in my article on reading, the brain is the final frontier.

The hypothalamus controls or runs the sympathetic nervous system (fight or flight) and the pituitary gland (the bane of adolescence), among other systems. In brain injury, most focus on the latter, if they do at all for internal functioning problems I’m discovering that many of us with brain injury have.

According to Medline Plus on the NIH (National Institutes of Health in the USA), the hypothalamus produces hormones that control or influence

the pituitary and other hormonal glands to release their own hormones
body temperature
hunger
thirst
moods
sex drive
sleep

The hypothalamus is a small area of the brain below the larger thalamus (which controls it), just in front of and above the brain stem, and right above the pituitary stalk, which it controls.

As you can see from the above image, the tiny little hypothalamus controls much of your body’s functioning. Basically, the hypothalamus determines whether or not and how much each of those glands or body parts secretes their own hormones in order to keep your body in balance. Every one of those endocrine glands runs an important part of your functioning from sex to healing to rate of metabolism to stress response and affects your sense of well-being. For example, the hypothalamus may determine that you’re too hot; it’ll tell the thyroid to dial things down, and you will no longer feel hot but just right. The word used to describe this is homeostasis. This is where you want to be: in balance.

Scholarpedia has an extensive scientific article on the hormonal aspects of the hypothalamus, which you can read here. But the hypothalamus also controls your autonomic nervous system. This system controls the autonomic — automatic, if you will — part of your metabolism, like heart rate, blood pressure, breathing (though that is also under your conscious control), and emotional arousal. The autonomic nervous system comprises the sympathetic and parasympathetic nervous systems. The former puts you into the fight or flight response when stressed, through increasing the secretions of a hormone released by one-half of the adrenal glands called “adrenaline” or “epinephrine” via the hypothalamus and pituitary gland and of a neurochemical in the brain called “noradrenaline” or “norepinehprine.” When the stress is gone, the autonomic system will rebalance, decreasing the activity of the sympathetic system and increasing the parasympathetic system.

The hypothalamus receives information about how your body is functioning from several different sources. From the vagus nerve, it finds out how fast your heart is beating and how bloated your stomach is or not. From the reticular formation in the brain stem, it learns how hot or cold your skin is. From the optic nerve, which sends signals from the back of your eyeball, it finds out how light or dark it is where you are. From certain neurons in the spaces in your brain called “ventricles”, it finds out whether toxins are present, toxins that can lead to throwing up. From the rest of the limbic system and olfactory (your nose) system, it receives information that tells it your level of sexual arousal and whether you need to eat or not. It also has its own receptors, which measure ion balance and blood temperature. It’s a busy, busy brain part.

The hypothalamus is involved in the stress reaction in two ways: hormonally and through the sympathetic part of the autonomic nervous system. It takes in all the incoming information and decides if you are stressed. If it decides yes, it’ll decide if this gland or that one needs to secrete more of its hormones or less to deal with the stress and decides if it needs to activate the sympathetic system. When the incoming information tells it that the stress is gone, it’ll dial the sympathetic system down and rebalance it with the parasympathetic system, and it’ll send new instructions to the glands.

The sympathetic system is your fight or flight; the parasympathetic the homeostatic or normal state of good functioning. As a result, the hypothalamus affects heart rate, breathing, blood pressure, body temperature, water retention, emotional arousal, glucose metabolism, and so on. The chart below is what I drew to describe what happens when your hypothalamus activates your stress response and deactivates it.

As you can see from this chart, the hypothalamus regulates the stress reaction. When stress increases, it releases glucose (sugar) from a compound called “glycogen” in your liver to provide the body with energy. The increase in blood sugar boosts insulin levels in the blood. Usually insulin facilitates the movement of glucose from the blood into muscles, but if you’re insulin resistant – meaning you resist this movement of glucose into muscle cells – then the glucose will go into fat cells instead. High insulin levels are associated with sodium retention if you’re insulin resistant. And all this results in higher body temperature; shaking hands; a cold core (your trunk) as blood is shunted from digestion to muscles; your blood vessels opening up in your skin or sometimes constricting (if you’re stressed due to fear like a bear attack), depending on the stress source; and water retention (the latter if insulin resistant). This prepares you to meet danger and decide if fighting or flying is the best course of action. Think that deer in the headlights that suddenly takes off.

When the hypothalamus decides stress time is over, it reduces the reaction, drops blood sugar, drops insulin levels, and you become cooler, your hands stop shaking, your core warms up to normal, your blood vessels constrict or dilate back to normal, and you pee out the excess water you’d retained. Beta blockers like atenolol somehow act to block the sympathetic stress reaction so that you don’t retain water so much, your hands don’t shake, your core temperature remains normal, and so on. Or at least reduces these effects even if doesn’t normalize them.

At the same time the hypothalamus is activating the sympathetic system, it may also tell the pituitary to secrete a hormone to act on the other half of your adrenal glands, a teeny tiny organ near your kidneys. While one half of the adrenals secretes adrenaline (see above), the other half secretes cortisol. Cortisol is the most commonly known hormone involved in the stress reaction. When you think of how cortisol behaves, think steroids. That’s why severe stress reaction may make you bloat up with water retention like you’ve taken oral or injected steroids.

Chronic stress happens when this stress reaction through both the sympathetic system and cortisol doesn’t switch off. This constant state of “on” can cause increased blood sugars (think diabetes), increased cholesterol (which is needed for synthesis of cortisol), weight gain, depletion of minerals from the bones and can increase the chance of developing diabetes, heart disease, asthma, allergies, and autoimmune diseases.

Since the hypothalamus is so deep in the brain and far away from the rough interior of the skull, it’s thought it’s not damaged in closed head injury or traumatic brain injuries that don’t affect the deeper structures. But I think that assumption is wrong. Back in 1998, a group of American researchers at Mount Sinai Medical Center conducted a study to look at complaints of weight gain, body temperature, hair and skin changes, and so on. These kinds of changes have to do with the stress reaction (and other issues too). For example, in response to stress, hair falls out. But when the stress is over, it grows back in. Unfortunately, when your brain decides you need to be in permanent stress reaction mode, your hair does not grow back properly and continues to cycle in and out of loss. Although Mount Sinai did look into the prevalence of these symptoms, not much has been done with this information other than to study those in hospital with severe brain injuries. That does not help those of us living at home, suffering these unpleasant symptoms or those of us who had closed head injuries and were never hospitalized. Up here in Canada we’re worse off as these complaints remain ignored and unstudied.

There is more, much more to know about the hypothalamus, but the only other aspects I will mention are serotonin and emotions.

Serotonin is a neurotransmitter that has been implicated in depression. But it is more than that. Low serotonin not only results in depression but also decreases satiety (which would make you want to keep eating). Increasing serotonin can not only lift mood and increase satiety, but it will also drop body temperature. Other neurotransmitters and hormones can decrease body temperature, like peptides, dopamine, estrogen, norepinephrine, and opioid peptides.

As for emotions, that’s a complex subject. However, the anterior cingulate gyrus seems to be connected both to the prefrontal cortex for cognitive tasks and the hypothalamus for emotional control. And apparently is also associated with mental flexibility and shift changing – something that is diminished or absent in people with brain injuries. It has a direct connection to the heart, and the heart can thus influence the brain to increase the activity of the parasympathetic system. For example, deep breathing will change the heart rate variability to be in sync with the breath so that inhalation will increase variability and exhalation will decrease it. As the heart rate variability moves into sync with the breath, the parasympathetic system will increase to balance the sympathetic system. And you will become calm, less stressed.

However, it is difficult to deep breathe 24/7. Also, my point of view is that all the changes in me were caused by injury, that is a change in physiology including in the hypothalamus. These are not behaviour- or emotionally-induced changes. Thus I needed something that would act directly on my brain physiology to reset its functioning back to normal.

All this gave me enough information to decide that (a) the locus of my brain injury-induced problem was in the hypothalamus and not the pituitary gland and (b) I needed to increase serotonin levels in the hypothalamus. My main focus was dropping body temperature, water retention, and my skin’s propensity to develop hot spots. Any changes to heart rate, blood pressure, and shortness of breath would be a bonus. After discussions with mindalive.com, thinking about this (which I’ve been doing for years), I decided to try what I call my “hypothalamus fix.” That is the subject of my next post.

—————————–

Note: I didn’t think about emotional control when devising my “hypothalamus fix.” Although I knew that having my frontal lobes damaged meant less control over the primitive part of the brain, I did not understand the role the hypothalamus plays in brain injury anger or emotional instability. For years, my affect (emotions) were flat but every now and then would become intense and roller coaster before returning to flat. Since undergoing brain biofeedback, my affect has come closer to normal but I still had emotional instability, though not as intense. The question I am now asking is what role does the hypothalamus play in emotional control and in sudden on/off rage.

———————-

Part 1: The Hidden Secret of Brain Injury: Hypothalamus Dysfunction

Part 3: A Hypothalamus Fix for Closed Head Injury?

Part 4: A Hypothalamus Fix Followup

Part 5: A Hypothalamus Fix: Second Followup

Reading: The Eyes and Brains of It

Shireen — Thu, 12 Aug 2010 23:05:58 +0000

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.

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.

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 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.

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

The Limiting Myth of Brain Injury Recovery

Shireen — Wed, 28 Jul 2010 17:11:25 +0000

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:

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.”
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?
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.
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!

Technorati Tags: brain injury, recovery, brain injury treatment, traumatic brain injury, closed head injury, acquired brain injury, health

Tax Relief in Canada for Those With Disabilities

Shireen — Wed, 24 Mar 2010 19:16:23 +0000

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.]

The Continuing Medical Insanity of Brain Injury

Shireen — Wed, 03 Mar 2010 15:50:12 +0000

You know, it’s a good thing I grew up in a medical family, learnt how to do research and search through libraries from a young age on, studied hormones from age 11 until, I think, 22 (through sex ed, biology, sciences), and took a one-year physiology course at the University of Toronto, else I may too have missed the big friggin’ hole in my test results, namely that the lab ever so kindly neglected to send the doctors two important test results when they sent their report. Oh yeah, the lab said, when I called (because heaven forbid doctors notice such things and follow up), the results are here, we did them. Could you, like, send them on, I asked. We sent the report, they said. Not those results you didn’t, I said. Oh but we did them, they said. I know you did them, I said, could you send them on? We can resend the report, they said. Not the report, the missing test results. Oh sure, they’re all here. Head to desk. Repeatedly.

Actually, only one doctor would’ve noticed that some of the results were not in the report, the one who ordered them, except that she didn’t. I also have discovered that her twit of a resident in that list of hormonal tests they gave me to have done had miswritten one, which is why the lab had said they didn’t do it. But I’m getting ahead of myself. This whole kerfuffle started yesterday when the test-ordering doctor’s office phoned to tell me that given my test results, she wanted to see me about management. In May. Late May.

Yes, folks, it wasn’t an emergency to her, no way they could squeeze me in earlier, perhaps put me on a waiting list for an earlier time, I just had to suck it up and stay worried about what could be wrong about my test results for almost 3 months. F* that.

I called my GP, after hyperventilating to my mother. He had been sent a copy too, looked at them, and told me what was wrong and then sent me a requisition form for the right cortisol tests, which I have to figure out how to get done. Hormonal tests are not easy, no just showing up any old time and being on any old medication. And some are not easy to interpret either. And then it doesn’t help when the lab decides to hang onto the results, which I understand is common. It took me all afternoon — only because labs are not allowed to release results to patients even though doctors are required to give patients a copy when asked and so I had to find out fax numbers and the entire list of tests so that I knew which ones were missing. I only realised one was missing because I had to pay for it and, when my GP sent me copies of my results, had seen that that expensive test was not there. Then I discovered two were actually missing. I was exhausted at the end of it all.

These were all being done so that when I see a pituitary specialist, also in May, she’ll have the results in front of her. The doctor who’d ordered them thought that the car crash that caused the brain injury had also traumatized my pituitary. It certainly acts like it’s having a hard time and needs some therapy.

The current theory is that I might be having an underperforming pituitary, which can affect all or some of the hormones it’s undersecreting. As far as I can tell, the “cure” is to replace those hormones by tablets or injections, always a tricky proposition given hormones fluctuate during the day, the week, the month, in response to stress. I may be able to get some help for some of these hormones from another specialist (yes, my life is full of specialists, I’m so special) I happen to be seeing later this month. So, under GP’s orders, I’ll be trotting there with test results in hand.

In the meantime, after ten years of internal crappiness, I have a lesson for doctors: if someone’s banged their head, test the bejesus out of their blood. Don’t just ask them who the Prime Minister is, tell them to stand up and walk, then pat them on the head and send them out the door, test their blood, test their heart, test their blood pressure, test their hydration, listen to their complaints. And if you don’t know what the results mean, send them to the right specialists.

Better yet, why is there no comprehensive clinic for closed head injury?

I went to neurorehab, saw a physiatrist, and though it was ten years ago, simple observation, listening, and reading of the literature should’ve told them to go beyond teaching me how to compensate for cognitive deficits and to examine how my body was functioning because, you know, the brain runs your body. Not just arms and legs, the obvious stuff, but the heart and stomach and adrenal glands too.

But they didn’t. And today, I’m being sent from specialist to specialist, each in a different hospital, as doctors scratch their heads because medicine has become so specialized, medical education so inadequate on the basics (imagine this: I spent more than double the time studying physiology in the Faculty of Arts and Sciences than med students did and do), that if it’s not in their area, they actually don’t know what area it’s in. It’s nuts.

If there was one clinic with internists and specialists and psychologists who all were familiar with brain trauma in addition to their own specialty, who all worked together, in which you got a full workup from appetite testing to body composition to blood and urine to physical to cognitive, including full-head EEGs and scans, you may actually get properly assessed and proper treatment, especially for those hidden problems.

Cross Country Shames Canada, Reveals Discriminating Attitudes Remain

Shireen — Sun, 28 Feb 2010 22:25:40 +0000

When I was studying psychology, back in the last century, in the less-enlightened-than-now era, we talked about not labelling patients and not calling patients patients but clients. The idea was that because of assumptions over the ages, we didn’t want to further marginalize people through diagnostic labels, didn’t want to give people a reason to separate those with mental illnesses from mainstream society. The same idea holds true for those with disabilities; hence the continuing change of terminology from crippled to handicapped to disabled to differently-abled. I would say that the Brian McKeever situation shows the mainstream still holds certain people at arm’s length.

During my neurorehab after my closed head injury, I was told that many people with brain injuries are talked down to, discriminated against because of the label “brain injury.” I never really experienced that, only from a couple of people I don’t see much anymore (wonder why), until after I settled my lawsuit and after I had applied for brain injury community services and got involved with the Brain Injury Society of Toronto. There was the extra assessment required by CCAC; there was the OT who dissed me, probably thinking brain injury = crappy short term memory, so what the hey; there’s the idea in the air that what I’m striving for is, well, amazing cause who with brain injuries can achieve. I’m not sure how to describe this attitude, but it’s like people with brain injuries are expected to need help scheduling mailing a letter but not with scheduling big jobs like writing a blog. There’s no sense of having mainstream society goals or mainstream society ideas or living in the mainstream as just another member of that society. But people with brain injuries aren’t the only ones dissed: people missing legs, eyesight, hearing are also considered less than.

And so when Brian McKeever was taken off the Canadian 50k cross-country classic team, many assumed it was because he was a token member anyway, that the others were faster, just like the coaches said, and that any complaint of discrimination was just same-old BS. It was amazing so few, including journalists (but then the obvious questions always seem to zip over their heads), parsed what was actually said and asked the coach point blank if he was saying that McKeever had been slower in the 50k than the other skiers for the past year or two or asked if any of the others were 50k specialists like McKeever or why favour sprinters over the 50k guy. It didn’t help that so few Canadians – and journalists – understand what the 50k requires and that it’s not the 30k or the sprints or that the classic style is much harder for some of the Canadian skiers. The assumption was that the blind guy didn’t really have a chance anyway because of his very blindness. And then people divided into two camps: I’m disabled (or not) and I should only ski if qualified, ignoring the fact that he did qualify; or let him ski anyway because of the history making and because of the inspiration of his story. Oy vey.

But these Olympics have fired up Canadians. They’d been looking forward to seeing McKeever ski and were outraged he wasn’t and vented on Twitter and Facebook. Canadians felt the coaches shamed, embarrassed, disgraced, and disappointed Canada. Some believed they used McKeever to fire up interest in their sport without ever intending to let him race. More and more people noticed that the guy’s times are competitive, that he has as much right to be part of mainstream society, of mainstream cross-country skiing as any of the others, that the real issue is that he earned his spot to be in that race and that by being in it he also would have inspired so many to realise that they really are no different from the mainstream and would have inspired the mainstream to realise that those different people are really the same as them.

And maybe that’s ultimately why he was taken out, though they said they took him out for the sake of cross country, for sake of putting it on the map for medal contention. Hardly. McKeever skiing in that race and doing well would’ve opened the door to others following in his wake. Letting the outsider in takes courage and foresight. Eliminating the connotations of those labels and seeing the person who is really in front of them takes an open mind. Women have always had to excel beyond what is required by and done by men to prove they belong. It’s no different for athletes like McKeever. Unfortunately.

In the end the race results proved the McKeever supporters right. Only one, Devon Kershaw, got close to the medal; one made tactical errors to be in first then dropped off, unless the idea was that he’d be Kershaw’s inspiration for as long as possible; the last two were nowhere to be found. And for that, they lost the opportunity to see what McKeever could do and fire up the nation for cross country skiing.

Technorati Tags: McKeever,skiing,cross-country,Canada,Olympics

The Three-Month Type 2 Diabetes Followup

Shireen — Fri, 08 Jan 2010 21:37:16 +0000

Back in September I wrote about my Type 2 Diabetes diagnosis and my early impressions with The GI Diet, and then I forgot all about reading the diet book every week and went on to more fun things like writing my novel and blogging about NaNoWriMo. But today I met with my GP to go over my pre-Christmas blood test results, check my feet (for diabetic foot problems), and weigh me.

He had given me two goals back in September: change my diet and lose weight. I’ve lost weight so slowly, a glacier would pass me by, and though I stuck more or less to The GI Diet, I absolutely refused to give up chocolate. I also wasn’t too worried about my cholesterol levels — my GP hadn’t discussed them much, being more focused on my sugar levels, and my impression was that they were OK — and I’d kept eating whole eggs, including yolks, and a mix of full-fat and low-fat cheeses. I have to say Whole Foods so far has the best selection of low-fat cheeses; they’re not rubbery and flavourless. (On a side note, I gotta ask why, when I’m vegetarian, use skim milk, haven’t eaten meat for years, and have good genetics for lipid levels, do I have any cholesterol issues?)

And so I trudged through the snow today to my GP’s with great trepidation. Then when he began rhyming off my bloodwork numbers, eight and a half years of “get over it,” “move on,” “you’re focusing too much on your problems,” interfered with my hearing. This is what Dr. Phil means about needing 1000 atta girl/boys to overcome 1 bad girl/boy. Even though I knew all these years that I was badly injured and that what I was doing was making me better — and that “getting over it” and gossiping about my weight behind my back was not going to do a thing to help me be better — hearing and reading from several sources how I was a complete F-Up year after year soaked into my soul, made it difficult to believe that my behaviour has done me good. Actually “staggeringly good” as my GP put it. He went through a few adjectives like “amazing” before deciding that “staggeringly good” was the best way to put my progress. His resident concurred.

What I thought of as a tiny weight loss, he thought amazing. What I thought were not-so-hot cholesterol numbers, he thought were amazing as I’d gone in the right direction in both HDL/Cholesterol ratio and LDL levels*. What I wondered was enough of a drop in blood sugar, he thought was impressive. And to my amazement, especially since I’m on beta blockers, both my heart rate and blood pressure have dropped. I’m hoping that writing this down will help me to absorb it. One of the problems I think many of us have who want to lose weight is that we’re surrounded by ads and articles extolling rapid and dramatic weight loss, when in fact it’s excruciatingly slow and small incremental losses that doctors and trainers want to see in their clients. That way, it’s permanent. I didn’t give up on my diet although my weight didn’t change for weeks on end sometimes, mostly because having experienced the frozen-molasses healing rate of brain injury where improvement is seen over months and years, I was used to slow change. And also because I’d have to account to my GP. (Apparently, the latter is not an issue for most people. One guy took over a year to call the doc back about his blood test results cause he was busy. Clearly, he doesn’t give a crap about his health.) Still, I couldn’t believe I’d succeeded.

Seeing my disbelief, he bluntly told me that of the general population, only 5% can change their lipid levels through diet and exercise. Fortunately, I’m in that 5%. However, of that 5%, only a miniscule number, such a low number in fact, it’s barely worth registering, actually do something about it, actually change their diet and begin exercise. So for me to do something about it is something to cheer about — it is staggeringly good. Plus it’s good to know chocolate is not bad for my diabetes. I shall have a hot chocolate to celebrate.

—————————–

The important cholesterol numbers:

Low risk: LDL <5.1 mmol/l and chol/HDL ratio <6.0 mmol/l
Moderate: LDL <3.5 and chol/HDL ratio <5.0
High risk: LDL <2.0 and chol/HDL ratio <4.0

Triglycerides: <1.71 mmol/l

Per 2006 Canadian guidelines.

Simply having your total cholesterol tested is insufficient.

———————–

The Core of The GI Diet by Gallop: The Glycemic Index

The Core of The GI Diet by Gallop: The Glycemic Index

Shireen — Sat, 24 Oct 2009 20:21:24 +0000

Aside from my rebellious first impressions of The GI Diet by Rick Gallop, I have to admit that this book does one thing very well: makes the glycemic index intelligible and practical.

Dr David Jenkins* at the University of Toronto developed the glycemic index as a way to measure how a particular food affects glucose levels in the blood and its attendant insulin response. Huh? Basically, a food will either make your blood sugar skyrocket or not. Those that do are bad bad bad for you. Those foods cause your pancreas to pump out large doses of insulin rapidly that suck up the blood sugar and then stuff the excess into your fat cells. The sugar becomes stored fuel, not used fuel. Gallop calls them red light foods. Those foods that cause your blood sugar to soar quickly but not too quickly, Gallop calls yellow light foods, like the amber light at an intersection that warns you to look before proceeding. In this case, think do you really want to eat this, is the transient pleasure worth the rise in blood sugar and all that will lead to, primarily weight gain and blood glucose results your GP will tsk tsk over? Then there are foods that cause a slow, long-lasting rise and fall of blood sugar like a slow, warm wave that washes over you langurously. Those foods Gallop calls green light foods because you can eat as much as you want when you want — within reason of course. Because the blood sugar rises slowly, it’s used as fuel for the body as you go about your life; there is no excess the body sees as storage potential and thus you don’t grow your fat cells. (Gallop explains it differently: red light foods give you a sugar high then a sugar low that leads you to look for more to eat, and that’s how you get fat.)

Gallop makes the index even more understandable by creating a small table of basic, everyday foods that you can eat but in strict moderation if you want to lose weight. My only gripe with this table is you got to remember the page it’s on and to keep looking at it else you’ll forget that no, it’s not 2 slices of bread at a meal but 1 that you can eat. What would’ve been nice is a pull-out card listing these foods that you could stick on your fridge or bread box where it’s always visible.

Gallop makes his traffic light analogy even more followable by listing at the back almost every food in colour-coded columns under category headings so that it’s easy to find out if what you want to eat is green lighted. And right at the beginning where he talks about starting Phase I of the GI Diet, the weight loss phase, he lists them under breakfast, lunch, dinner, and snack, which makes it even easier when starting this diet.

Some people think it’s easy to follow a GI diet cause you just eat more fibre. I’ve had one rather obese person say she doesn’t need to get the book because she eats healthy, no white bread, no white sugar. Uh huh. Clearly, losing weight and keeping it off is more than just switching one’s bread to whole wheat. First off, in Canada, whole wheat does not mean whole grain, and only whole grains give you the complete nutrition and fibre content of the wheat. Also, did you know that how the wheat is milled will change its glycemic index rating? If it’s milled the conventional way it’ll cause a much faster, higher blood sugar rise than if it’s stoneground.

I was in the mood for a sandwich the other day — a no-no as a sandwich is 2 slices and I’m supposed to have only 1 slice per meal, but what the hey, I was in the mood, and a Herbivore sandwich for me is 2 meals anyway. So I went there, and as she was preparing my yummy, huge sandwich, I noticed all these goodies. Several used spelt flour, so being mindful of what Gallop had said about stoneground wheat only, I asked, “Is the spelt flour you use stoneground?” I got a blank look, the kind that screams I’ve never heard that question before. She asked someone in back; that person said she had no idea but now was so intrigued just had to find out. Several minutes later, she replied, it’s stoneground. Whoo hoo! I bought a chocolate chip “cookie.” Yum, yum, yum. OK the bananas in it were not the most GI friendly but the flour was as were the rest of the ingredients, so I figured I was good. I continued to lose weight after indulging in that anyway.

The problems I had with converting my diet to The GI Diet were in finding the kinds of crackers and breads and snacks I could eat. I discovered that many so-called high-fibre breads and crackers were not, despite what the labels said. I would buy a package of what I thought was the good stuff, take it home, compare the fibre grams in it to what Gallop said it should be and find it sadly lacking. I finally wrote down the nutritional requirements to take with me to the store and spent hours poring over labels. As Jane Haddam is so fond of saying in her Demarkian mysteries, it made my head hurt. I would say it took me about a half dozen trips plus a couple by my mother to the grocery store for me to finally get my snacks and breads in order.

Gallop recommends Wasa brand crispbreads; the store clerk told me they fly off the shelves. I don’t know why. They made my gums hurt (and I’ve never had problems with seeds before), feel like sawdust, and taste so-so. Back to the cracker aisle. I had the added problem of trying to find an organic product as I prefer my diet to be as close to 100% organic as possible, at least at home anyway. I finally settled on Holland Organic and Ryvita. The latter is not organic, and the former, after I did the math, I realised didn’t have enough fibre in it. Ryvita seemed very familiar to me. Turns out my maternal grandmother insisted on my mother keeping it in stock for her. It’s a lot tastier than Wasa, and my gums are OK too. But the Holland cracker is absolutely terrific with cream cheese and strawberry jam. So I may treat myself to those every once in awhile.

Bread was a bear to find. First off, I guess I’m fussy. I like slightly sweet — sweet from the grain, not sugar — chewy, flavourful whole wheat bread. I tried multigrain, and although it’s OK, I much prefer whole wheat. Plus multigrain breads are not all made the same. Most don’t have enough fibre in them. Then I had to figure out which whole wheat was stoneground. What a pain in the you-know-what. Most breads don’t list that on the label. I had to go surfing their websites and, in the end, just go in to the wholesale-retail outlet and ask. The St John’s Bakery Integral and Red Fife breads are made with stoneground flour. They’re pretty darn good too. Tough to keep to the 1-slice-per-meal rule.

And lastly, I hadn’t eaten protein bars before but after reading and rereading Gallop’s 3 meals, 3 snacks plan of green-light foods for weight loss, I decided that would be the easiest way to fulfill at least 1 snack requirement. Ha! I went to 3 different stores, stood in front of 3 different protein bar aisles, compared the nutrition labels of all these bars to what Gallop recommends, and wanted to give up right then and there. Too much fat, not enough protein, too much sugar, way too many calories, ingredients that sound like a pharmacy aisle, ingredients that make me gag, not organic. The ones I settled on were closest to his requirements but were too caloric and had too much fat. And then my mother remembered that my father Dr. Khursheed Jeejeebhoy works with a woman who has developed an entire line of low-calorie, low-fat protein bars that triathletes love. The Simply Bar. And they exceed Gallop’s recommendations too. So now I got my snacks sorted.

Next, his fat rules.

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*I worked in Dr. Jenkins lab one summer as a student. It was nice to work with human diets for a change instead of rats, and I may actually have been there when he was developing the glycemic index. I remember being fascinated with his work and regretting that I spent such a short time there. Most summers I worked in Dr. Harvey Anderson’s nutrition labs at the other end of the building and learnt a lot from his staff.

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First Impressions of The GI Diet by Rick Gallop

Shireen — Wed, 14 Oct 2009 16:21:19 +0000

It’s been almost 4 weeks since I started The GI Diet by Rick Gallop after my Type 2 Diabetes diagnosis. Before my brain injury I had been following a low-glycemic index (GI) diet; but not being able to cook for many years and the other changes wrought by the injury resulted in me having strayed and forgotten many aspects of this diet. This book is one of the easiest to follow in terms of figuring out what is low GI and what is high, but there is a lot to learn.

Gallop divides foods into red light — foods with a high GI and are verboten — yellow light foods — mid-range GI foods that should be eaten with caution when maintaining weight or not at all when losing weight — and green light foods — low GI foods that can be eaten at will. This was good. But then he went on to say that one must cut out all sugar, coffee, and chocolate. Um, yeah, OK.

He recommends replacing sugar with Splenda or some other artificial sweetener. Now having studied sweeteners in nutrition when at the University of Toronto, I knew one thing: I wasn’t going to touch them with a barge pole. As well, as one who loves to bake, I’m prepared to make substitutions, like apple sauce for some butter and some of the sugar, but I’m not prepared to use Splenda instead of sugar. If I had Type 1 diabetes, I would of course make different choices, but I have marginal Type 2, and because of my brain injury I’ve already had to cut out a whack of stuff that result in either my body temperature going even higher than it is or bloating. Also, the brain eats glucose for energy, and after heavy mental work, my sugar need rises like you wouldn’t believe. If I don’t have something with sugar in it, my brain doesn’t work so good. So the idea that I can’t have sugar on top of not having salt, pepper, cinnamon, ginger, spices, etc. etc. does not sit well with me, to say the least.

The other aspect of the nothing sweet rule, unless it’s artificial, is that eliminates natural sweeteners like honey and molasses that do have nutritional value. Certain kinds of manuka honey are said to have immune enhancing properties; blackstrap molasses contains iron (the organic kind is the only tasty version). Maple syrup of course is Canuck to the core, so how many real Canadians are going to give that up?

And then he says no more coffee and chocolate:

“The trouble with coffee is caffeine [actually that's also it's benefit]. It’s not a health problem in itself, but it does stimulate the production of insulin….insulin reduces blood sugar levels [good reason to have that teaspoon of sugar in it then, eh?], which then increases your appetite [not mine, but then I'm odd]. Have you ever ordered a venti from Starbucks and then felt positively shaky an hour later? That’s your blood sugar hitting bottom. You cure it by eating a bagel — which isn’t helpful when you’re trying to lose weight.”

That’s actually never happened to me. If you’re getting the shakes, then you’re drinking more coffee than your body can handle — so don’t drink that much! — and the caffeine has probably overstimulated your central nervous system, which it’s wont to do, being a stimulant and all. Again, note that not all the population responds physiologically the same to the same substance. I asked around and apparently diabetics do drink coffee without any ill effects; in fact research is saying it may help with Type 2. So one must pay attention to one’s body and balance out one’s priorities. For me, being alert is the most important thing.

It seems to me diet gurus reflexively frown down upon coffee and chocolate. Yet they have beneficial effects. Coffee helps with ADD; it can help with mild asthma also. Decaff, which Gallop says is OK, does neither. Regular coffee, not decaff, also increases mental alertness, and it can help with exercise tolerance, allowing a person to exercise longer. Cocoa can do the same thing even more effectively. I’ve written before about all the good things about chocolate. It seems to me that diet gurus talk about coffee and chocolate as if everyone is swilling down 7 or more cups of coffee and gorging on an English grocery aisle of candy bars masking themselves as chocolate. I don’t believe that’s the case. Gallop allows that if one must, one can drink one cup of coffee a day. I have mine black with a teaspoon of sugar, and I rarely finish it. I also vary the time I drink it so that I will not develop a tolerance to it (something I learned at university) and thus don’t need to up the number of cups I drink to get the same effect. Apparently, the experts are saying up to 2 to 3 cups a day is fine.

As for chocolate, I ain’t giving it up. I am heartily tired of everyone frowning down upon it, and to be quite frank, how many dieters stay off chocolate once they get to their target weight? I bet none. Once you add it back in, you’re adding in calories you haven’t learnt to accommodate in a healthy diet and you’re probably eating the same kind you did before you went on a diet instead of adjusting your taste buds to good quality, dark chocolate. So is it any wonder your weight creeps back up once the diet is over. Far better to lose weight while still eating chocolate, I say. I call it the chocolate variation.

Gallop also divides nuts up into those that are OK within limits and those that should not be eaten when losing weight. One of those in the latter category are walnuts. Yet walnuts are very good for the brain and body with all those omega fats in them.

I started to wonder at that point that with the emphasis on the glycemic index and little fat, if the nutritional and functional side of food was being totally ignored. Now if you’re overweight but otherwise healthy, you could probably knock out walnuts and not notice any change in your mental acuity, or knock out chocolate and not have any pain or energy repercussions. But for those of us with chronic illnesses or injuries, these diets really need to be modified to include the fact that some foods are necessary to keeping problems at bay or at least not so bad. Brain injuries in particular are hardly understood (despite what over-confident docs say) yet are affected by what you eat, as I’ve learnt over the years. As well, trauma always increases nutritional needs, and too many brain injuries happen because of trauma. Yet doctors know little about that side of nutrition, and the diet books are aimed at the general public, not the injured one. There is a great, gaping hole in this side of losing weight while trying to regain health.

So I continue to add a teaspoon of sugar to my small cup of instant coffee. I still have my up-to-but-no-more-than 10g per day of Green & Black’s 34% milk chocolate every so often and my cup of hot chocolate with skim milk at the end of the day. I currently use Green & Black’s hot chocolate mix but will be switching over when the jar is finished to Cocoa Camino’s dark chocolate mix. I rarely ate store-bought cookies anyway, preferring to bust stress by baking my own. I haven’t had the energy to bake in awhile, as does happen, so my cookie consumption is pretty low right now. It goes in phases anyway. And when I do bake, I’ve been using whole wheat cake and pastry flour for years and years — a low-GI flour — and when I remember I substitute unsweetened (organic) applesauce — also low GI — for half the butter. I recently tried butter-free half-the-sugar double-chocolate cookies. They were good but more like mini muffins than cookies.

So far, I have steadily but slowly lost weight, except for a recent 600g abrupt drop in 2 days. Next time, I’ll talk about the point of the book: changing my diet to the low-GI way. What a kerfuffle that has been!

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The Core of The GI Diet by Gallop: The Glycemic Index

What Does it Take for a Person to Change Their Diet?

Shireen — Mon, 12 Oct 2009 17:00:30 +0000

The Toronto Star today calls the Canadian diet a “dog’s breakfast.” Citing toxic foods and a sedentary lifestyle as the causes of obesity, it looks into how one Québec doctor, Dr. Jean-Pierre Després, is developing a program to counter this trend. I saw two problems with his work: all male — why in the 21st century are researchers still ignoring half the population?! — and with a 65% success rate, still doesn’t counter the kind of attitude that pretends “we’re all right Jack.” And, of course, it only addresses the issues of obesity in the otherwise-healthy population.

When my GP diagnosed me with Type 2 Diabetes, we had a moment where he was complaining I wasn’t listening to him, and I was complaining he wasn’t listening to me. He was talking to me as if I didn’t get it; whereas, though I was expecting this day, I was complaining this was all too much on top of everything else I had to deal with (brain injury being the primary issue). Yet I shouldn’t have been surprised at his complaint — being immersed in the medical community growing up, I’ve often heard doctors complain about patients continuing to do that which is bad for them despite their repeated warnings, so in some ways him talking to me like I didn’t get it was to be expected.

What really got me upset though was how others spoke to me as if I didn’t get it. I was spoken to in stern tones like a child, given warnings of death and told I just had to make changes, just had to drop chocolate and cookies. At least one of these people knew perfectly well I had tackled a far bigger, far more intransigent problem on my own, facing the reality of brain injury when all the others around me pretended nothing had happened and exhausting myself with various years-long treatments. So why would I suddenly be incapable of not facing reality, the reality of diabetes?

Well, perhaps because so many are. After my diagnosis, I spoke to one gent I’ve known for years. He said he had it. It runs in his family too. Yet that ubiquitous male health-sucking “beer belly” remains, and he still munches on potato chips. Does he find it too difficult to eat the way one should? Does he not think it’s any big deal? He has loads of energy, so perhaps he doesn’t feel the need to make the diabetes change. Perhaps that’s the key to the puzzle of why people don’t change: they feel well.

I have a friend who has steadily gained weight every year. She is obese but not diabetic. She has loads of energy too, though these last couple of years have been challenging emotionally. Perhaps that’s why she didn’t buy The GI Diet by Rick Gallop and start following it when advised to a few years ago. She says she doesn’t eat white flour or white sugar. Like Margaret Webb, the author of The Star story today, she says she eats healthy, except she makes omelettes with whipping cream, brews tea to the point of bitterness then puts loads of sugar and milk in it, drowns potatoes in salt, slathers butter on toast to a nice shiny, thick sheen. At that point, it doesn’t matter that she toasts her whole wheat bread, the amount of butter will slather on the poundage. She’s starting to get short of breath — which I find alarming but clearly she does not — yet says she doesn’t need the added stress of buying the GI Diet. Well, that wasn’t the excuse when it was first suggested to her; she’s always asserted that she eats healthy. And so I wonder how she resolves the cognitive dissonance of being quite obese while supposedly eating healthy. She’s not alone either; even Webb was shocked to discover that her healthy diet wasn’t actually all that different from the average “dog’s breakfast.” And I know/have known loads of overweight people who claim to be on this diet or that, who claim to be eating healthy, while steadily gaining or at best not losing poundage and who flat out refuse to eat like I did pre-brain injury and like I’m trying to return to but in a more stricter way because of the diabetes. So why is it people are completely unable to face the reality of their size and their health? Why do they claim that what they’re doing is working when their girth and their blood tests — assuming they consent to the latter — say otherwise? Even people who are at a good weight are obsessed with their diets, while being inattentive to their health.

I think what Dr. Després is doing is a good start. He has confirmed what Oprah has said for years — one needs support and a good plan to succeed. But he is missing that part of the equation of why people hear their doctor say they have diabetes, they are obese, but do not accept it and continue on their merry way. I really wish someone would find the magic key to that so that people like me who want to have a bitchin’ session before getting down to brass tacks don’t get dumped on for not listening.

I have to say, it totally sucks. I sure as heck didn’t need the added stress of this diagnosis. And I didn’t need the extra drain on my energy of having to count calories to retrain my brain, of having to check the fibre grams on every cereal, every bread, every cracker I buy, of having to reduce my fat grams down further than they already are. Trying to get closer to what my GP wants, what my trainer advises, what the GI Diet book suggests, has absolutely exhausted me this weekend. Instead of writing and working on my photos, I’ve been expending energy on this crap the last few days. What’s worse is that since 2005 I’ve recognized that not writing for too many days puts me in a bad mood. Some people have to run to maintain their emotional equilibrium; I have to write. So when people look at me and say they don’t need the added stress and say their GP agrees with them (more like the GP is exhausted with arguing with them), I just shut up cause otherwise I’d bark their head off.

Type 2 Diabetes Plays Gotcha

Shireen — Sat, 19 Sep 2009 16:39:58 +0000

May be at the mercy of bugs and bad luck but they stand undimmed

I haven’t blogged about myself in much depth because for years my lawyer banned me from blogging about even the most trivial personal item. I did graze the line when I ranted about raccoons, but I think that was forgivable. No one can withstand a raccoon rant.

But today, I turn a new, quivery leaf, for I’m still reeling from the unsurprising diagnosis of Type 2 Diabetes. It’s no surprise because the feast-and-famine-otherwise-known-as-diabetic gene runs in my family. I’m reeling because I’m not that overweight, not even close to obese, unlike many I know, but I’m the one who gets rammed by this news, on top of everything else I’ve had to digest, absorb, adjust to over the last 9, almost 10 years. I’m a little ticked off to say the least.

Before Y2K, I ate a mostly low-GI (glycemic index) diet, rowed a stationary rowing machine, did free weights, and walked a lot. I cooked every day — I loved it! — and rarely ate out because, ahem, my food just tasted better. But the car crash changed that. Not being able to cook for myself meant for years I was dependent on microwavable meals, other people’s idea of nutrition (tasty though), and vegetarian takeout, all of which was higher in fat, salt, and simple sugars than I was used to. Plus being in so much pain had me chucking back the Green & Black’s chocolate like candy. But my real weight gain didn’t happen until I caved in to all the pressure and rented out my basement to a fellow church goer. What a selfish, ungrateful piece of shit she was; she took full advantage of my slow thinking and inability to stand up for myself. Let’s just say my chocolate consumption shot up and I needed my friends’ help to get her pot-smoking, criminal friend out of there. Never again! Meanwhile, the neck and shoulder sprains meant I wasn’t able to exercise for 3 months and then had to start all over again and increase it at glacial speed. And when I thought I was better enough and increased it to close to normal, I bloated up like the Michelin man, including inside of my mouth, and freaked myself out. My skin also freaked out.

Still, I knew that gaining weight was a no-no for me, something I’d easily avoided before the Y2K crash. I had lost some, but then I started brain biofeedback treatments, which was exhausting and made me inhale a can of pop — me, who rarely drank the stuff — after each treatment. I guess that since the brain requires glucose to work, it was feeling seriously deprived after each session. Once the treatments were done, the craving went, and I stopped. Still, the damage had been done; with no support, no knowledgeable help, I couldn’t lose weight on my own again. I had too much else on my plate and was weary from 9 solid years of learning and working to get better.

And then this summer, that all changed. I got a new GP. The first thing he did was hook me up with a trainer. The first thing the trainer did was listen hard and listen well. No one had done that before. All I’d heard was lose weight or you don’t exercise enough or you exercise more than I do or you just have to exercise willpower, never mind that my willpower was shot from all the brain injury recovery. In short, all completely useless and unsupportive. (Oprah ain’t kidding when she says to lose weight, you need support; if you can’t get it at home, here are “my community forums.”) He suggested I cut my exercise back to the point where I stopped bloating up at night and could sleep flat. Once we determined that was 10 minutes three times a week, we made that our starting point. I cannot tell you how much of a relief it was for someone to take my concerns seriously and to think about how to get around the problems in a win-win way. Even today, after speaking to him, I went from being overwhelmed as to how I’m going to do all this, to feeling that I can do it.

Anyway, my GP ran a bunch of blood tests, including the ones I’d wanted to have done for months and months as I myself was concerned about my iron and Vitamin D levels. Unfortunately, my glucose levels came back too high. And so he did a glucose challenge, A1C, and fasting glucose. All bad. The challenge was double the max normal level; the latter two were just over the max. After rerunning the tests, he confirmed that yes I’m diabetic, Type 2, but right on the borderline. In short, I follow his instructions else he’ll send me to an endocrinologist. Since he and I had already discussed my views on those specialists, he knew that would be a very big incentive for me to comply.

The trainer had already told me to eat 1,700 calories a day once he had got me up to 15 minutes of exercise three times per week. Now my GP wanted me to buy The GI Diet by Rick Gallop. As I mentioned earlier, I was familiar with this (I’ve even met the guy, Dr. David Jenkins, who developed it here at the Faculty of Nutrition, University of Toronto), but like so much else since the crash, I have to relearn it. Can I tell you how sick I am of relearning stuff? A lot!

It’s going to be a gradual process for me. On the one hand, I act on what I’m told right away — I was told to buy the book, I went to the bookstore immediately and bought the Menopause Clinic version as it was the only copy on the shelf — and I have much knowledge; on the other hand, I am slow to absorb and implement stuff. Last night I read the relevant parts over and over, and this morning I reread and reread the section on breakfast. I finally figured out he meant ½ cup of oatmeal flakes not ½ cup of cooked porridge. Luckily, I had been eating the right kind of oatmeal — not instant, but big flakes of rolled oats — with skim milk and the ubiquitous wheat bran (if you know my Dad, you’d know you can’t have breakfast sans bran) but not enough. So I upped it. After talking to my trainer, I shall be adding frozen blueberries to the porridge and then have a boiled egg with cold toast. (One piece of good news is my cholesterol levels are OK, so I can eat eggs.) I had my mid-morning snack, which took a bit of thought as I’m not exactly swimming in acceptable snackable foods. I have no idea what I’ll do for lunch, so I’d better go start thinking about it so I’ll have it ready to eat before my stomach is eating my mouth.

A lot of changes are happening all of a sudden. I’ve applied for and am getting support for my brain injury issues and now I’m having to deal with changing to a full-on low-GI diet, which means I’ll have to figure out how to cook more often for myself. Constant change is nothing new, for anyone with a brain injury knows that’s all your life is about: change. Changing brain, changing life, changing habits. I just wish it was my decision alone, not my health’s, not God’s.

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The Core of The GI Diet by Gallop: The Glycemic Index