Saturday, February 25, 2012

On Exercise, Weight and Weight Loss

I've been thinking about exercise lately, since it's one of the things in my life that is more-or-less under my control (unlike my vision, say, or my balance).

Five months ago, the idea of going to the gym for an hour five times a week, followed by a 30 minute swim seemed plausible, but was far too much effort. My primary motivation then was to lose weight in order to get laid (more).

Twelve weeks ago, the idea of ever working out in a gym again seemed impossibly remote. I was still struggling to walk even a step or two unaided, and a half hour of physio would wipe me out for much of the day. The stroke damage was still overwhelming.

Six weeks ago, I began to feel like the standard fitness goal of doing 5x30m a week* was going to be difficult, but achievable within the nine remaining weeks of my excellent post-stroke program.

Today I'm about to do my 30 minutes of physio exercises this morning, and looking forward to getting to the gym a bit earlier, so I can do more work before the time allowed for supervised swimming. It's the third week I'll have been five times. Achievement unlocked!

Obviously, my persistence and determination have played a part, and it's hard to replicate my sense that my current physical deficits are unacceptable, but I think there's more going on that is generally useful.

First, my motivation has changed from "get laid" to "don't die," For me, this was a fairly easy shift to make. Having some strokes was less of a warning shot, and more of a breach at water level. It's harder if you're like the me of five months ago, where the statistics about stroke, heart disease and diabetes are difficult to absorb on a personal level. That's your problem, and not one I can really help with, except to say many of you, my friends, are too fat, and that's making you sicker, and more likely to drop dead.

Second, and actually maybe useful, has been that with the physical deficits I find so intolerable, my ability in the gym had to be completely recalibrated. I simply couldn't run on the treadmill (I still can't actually run, or even let go). That meant that I had to throw out every expectation I had about what I could reasonably do, start listening to my body, and be fine with being a pathetic cripple loser: not easy.

A year or so ago, when I re-joined the gym on my block, I took the free session of personal training. At the time, I weighed in excess of 230lb, and I hurt so much afterwards, that even though I already knew experientially that I could work through the discomfort, I still didn't want to go back three days later, let alone the next day.

Now I have to tread a balance between doing enough and exhausting myself (when everything, speech, motion, thought, it all slows down), I find I do enough to feel like I've worked, and I do notice days off, but never so much that I've been in pain. The results have been excellent. I got fitter faster than I expected, I've continuously lost weight, and I want to go to the gym more than ever.

By concentrating on the extremely low bar of basic aerobic fitness (the 5x30), and being unable to care that the person next to me might be running along at full tilt while I'm working hard to walk 2km/h, I've met goals that I couldn't otherwise have met, and not lost my motivation. You can do this, too.

TL;DR: You're too fat, my friends, lose weight or die. Care only about what you can do in the gym. Screw those other people, they're probably doing it wrong**.

* That's 30 minutes of moderate aerobic exercise, five times a week. You should be slightly hot, slightly sweaty; that's all. The 30 minutes can be broken into chunks within a day, but nothing shorter than 10 minutes, or you no longer gain the cardiovascular benefit. That's enough to get continuously fitter. As the nurse said, "it's better to be fit and fat, than just fat."

** I pay a lot more attention to form these days, than weight. It's paid off.

Thursday, February 23, 2012

Barrier Broken

I weigh less than 190lb now (13st, 8lb or 86.2kg). That's down 40lb at least from my worst, with another 20 to go. I am winning.

Also I put my boxers on after the gym without holding onto anything, or sitting down.

Small victories, but victories nonetheless, and I have found it worthwhile to record such victories, no matter how minor.

(1/15/2013 -- a few months of depression, and I ballooned back over this milestone. Such is life. I intend to be more wary of depression in the future!)

Saturday, February 18, 2012

Seeing From Eyes to Mind

Many years ago, I was taught in biology class that, while the eyes register visual stimuli, it is the brain that actually sees. I dutifully learnt the fact, but didn't ever truly believe it, or rather didn't really understand it. Experientially, as someone growing up with gradually worsening myopia (short sight), it seemed that my eyes were doing all the work, and I didn't comprehend how the brain was really involved.

Sure, I understood about binocular vision and depth perception and all that stuff, but it wasn't until I damaged my brain and suffered some visual problems as a result that it became much clearer. I now understand better than ever that the eyes 'merely' process visual information, the brain sees.

To explain how this has worked for me, I'm going to bore you with my current deficits again. As you may have gathered, 'deficit' is the charming circumlocution used to destigmatise phrases like 'brain damage' and 'disability' that nevertheless makes it pretty clear to me that I am less than once I was. While unfortunately I recall what it was like not having deficits, fortunately I also stand to recover the damage done; I prefer to focus on recovery than damage.

Anyway I have two or three deficits to contend with at the moment: double vision (diplopia) and one and a half syndrome, which may be the cause of the third, oscillopsia. My diplopia is diagonal, with the left eye image up and to the left of the right eye image. The oscillopsia I've had in both eyes, and is worse first thing in the morning, or late at night if I'm tired. I'm generally worse in all respects at those two times: Starting the day with a mug of tea seems to help.

One and a half syndrome is sufficiently rare that it causes excitement bordering on glee when experienced stroke neurologists encounter it. I'm often the first case they'll have seen outside of an exam question, and have in fact been asked if I would mind being an exam question (I don't mind at all: I'm game for anything that involves students in neurology and all research studies along the way). The wikipedia article describes the syndrome well, and I won't repeat that here, but you might want to have a read: one and a half syndrome.

What it means from the inside is that my eyesight is kind of screwed for the time being.

The most debilitating effect has been the diagonal diplopia. Soon after my stroke I found that it was practically impossible to operate with both eyes uncovered. My brain could make almost no sense of the competing visual fields offered by my eyes. This was quite peculiar, because although at a higher level I am able to recognise intellectually that I am only holding up a single right hand, my brain cannot rationalise the two hand images into a singular binocular image and insists on 'showing' both. The data one part of my brain is receiving can not be processed into the type of image another part of my brain is used to receiving, so it just gives up and passes on the two superimposed images.

The vertical offset in the diagonal plays havoc with my balance. Although proprioception is the lion's share of balance, there's a considerable visual component as well, and having one eye tell me that the floor is this way, while the other assures me that, no, the floor is that way is a surefire way to keep falling over. My proprioception was shot, too, so all in all the most convenient way to help my brain pick one image over the other and stick to it was to occlude one of my eyes. Since my left eye is the one that doesn't track to the left, and had developed a squint (which I thought was unspeakably ugly and made me more likely to be treated like a fool), I covered the left lens of my glasses with a special frosted covering, and tried to get on with it.

Operating with only one eye is more challenging than I had thought. I had an idea that it would be awkward, but had no idea quite how bad. My undying admiration goes to my friend with a glass eye. I have no idea how she makes everything appear so fluid and easy. Regardless, lack of depth perception has been unpleasant in many ways, and I'm reasonably confident in saying you will have no idea how unpleasant it is until you try it while your balance is already off.

Occluding my left eye made the diplopia manageable, so I can do things like use my laptop and read a book at all (slower, of course, but luckily I can still read), but it highlighted one of the features of one and a half syndrome: nystagmus in my right eye. When I look to the right, I'm able to do so with both eyeballs, but the right eyeball flicks rapidly to the center and back again. To add to this is the experience of oscillopsia: When I focus my gaze on a single point, my eyeballs wobble up and down a little..

These deficits are what has made it very clear that my brain is doing theseeing part. Most of my deficits are in fact neuro-muscular: There's nothing wrong with my eyeballs that wasn't wrong with them beforehand, instead it's the connection between my brain and my left lateral rectus that's been most clearly damaged (the VIth cranial nerve), and my brain's fine control over the whole extra-ocular musculature that has also suffered. 

To form a binocular image, the brain instructs the eyeballs to keep a single object focused on the macula, and combines the data that the two eyes present into a single image with depth This is something we learn as babies: Watch a six-month-old's eyes wander around and the focus sometime. Lacking the muscular control to move my left eye so that it focuses on the same spot as my right (remember the squint I mentioned?) my brain ends up with the double vision. With one eye effectively taken out of the picture, it should have been plain sailing, but it wasn't.

It soon became apparent to me that my right is moving involuntarily. Not much, but if I focus on one word on a page or screen, the motion is obvious to me. Despite this, though, I perceive a largely steady, static world around me. My eye is jiggling around a bit (not enough for truly comic effect, although I do have moments of feeling like Mad Eye Moody), but the world is still. This is the brain seeing. In effect, it's learned to recognise the jiggle as a kind of scanning of the world, and maintains a static image for me to use, because the alternative is chaos.

In effect, my brain is discarding the fuzzy occluded data from my left eye, then applying Occam's Razor to the data it's getting from my right eye, and providing me with that filtered perception. It makes a lot more sense that the world is not constantly jumping up and down, so my eyes' raw data has been subjected to reason at a very low level.

All of which is my own understanding of what's happening in my brain and eyes. Neurologists and ophthalmologists who actually want to talk to stroke patients about their vision are few and far between, and their message has been consistent on both continents: wait four to six months, eye problems with stroke usually clear up on their own. Given how terribly debilitating the visual problems I have are, and how depressing the apparent lack of change in my vision has occasionally been, it's a little surprising and a lot disappointing how little information was available to me. I guess four months doesn't seem that long when you're a clinician looking at a long stream of stroke sufferers ready to start their recovery (or decline), but it has felt like an age to me.

Happily, a few weeks ago I started to suspect that the diploplia was steadily resolving, and that seems to have continued. Like everything else with stroke recovery after the very early stages, it's abominably slow, but I think it's real. The difficulty is that my eyes don't get a lot of time to practice looking at stuff and being wrong and being corrected by my brain: That feedback loop that's been unused since I was a babe in arms needs some exercise. Fortunately there are two times when I take my glasses off, and I'm used to being unable to see (really strong myopia): in the shower and in the pool.

In both cases, I'm usually thinking about something else, so my eyes have free rein to do whatever they want; I put very few demands on them. In the shower, I'm focused on the mechanics of getting clean; in the pool, I'm concentrating mostly on the form of my breast stroke and being as even as possible. Hitting the end of the pool isn't really a problem. So it looks like, with the swimming in particular giving my eyes a bit of a workout, and with the exercise I've been forcing my extra-ocular muscles to take, the double vision is on a path to recovery.

The one and a half syndrome may be with me for good, but the squint is gone, my left eye is tracking in tandem with the right (mostly) now, and itseems to track to the left past the midline. Which is either a positive sign that I may recover from the syndrome, or evidence that the extra-ocular muscles are compensating cunningly. Finally, I have hope (but nothing else) that the oscillopsia is related to the double vision, with both eyes trying to find a common focus, and so far failing. If that's the case, all to the good. If not, well it could have been a whole lot worse.

Monday, February 13, 2012

Sage Advice

That thing that's got a bit harder because, maybe you're a bit older or a bit stiffer than you were? Notice it, stop avoiding it or working around it. Do it more. Embrace it, find out why it's that way, and work to undo that slowness or stiffness. Now is your only chance.

Saturday, February 11, 2012

State of the Newman

I had my strokes starting four months ago today; time for a round-up of what I think is happening in my brain and body at the moment.

Apart from, the problems common to most strokes, I have three principal deficits: left side facial paralysis, vision and right side weakness. The change in side (at the base of my neck) is because I had several strokes: different strokes, different deficits.

The left side facial paralysis has undoubtedly improved since I was last in New York, nearly three months ago, but slower than it did initially. I expect it to keep improving, but over months, rather than weeks, and it would not surprise me (and no longer horrifies me) that it might take years to effectively eliminate. One of the difficulties is in activating the many muscles of the face. I find I focus on muscles that I feel responding, often long before they visibly respond, and exercise those, there being no other way to get facial muscles to move independently.

One thing that helps get the paralyzed side moving unconsciously is conversation. Although it is hard to get stuck in to a good chat when much of my side is limited to the somewhat boring topic of me, my stroke, and my recovery. Anyway, if you see me in a hangout, or with video chat enabled and have exciting news, are morbidly curious, or just feel like saying hello, then do so!

My vision can be broken, think, into two discrete deficits: double vision(diplopia) and "one and a half syndrome." They're obviously related, but from where I'm sitting, can be addressed separately. The diplopia has been enormously debilitating: unaltered, I can't see well enough to walk without falling over, or even read, which has been a keystone in my life. To function, I've had my left eye occluded for most of the last few months: I can see a blurred, misty version of the world form my left, which my brain has got quite comfortable at rejecting, in favour of the sharper, more consistent and usually more reliable image that my right eye generates.

I'm starting to see signs that the diagonal diplopia is resolving. With many brain-related injuries to the sight, though, it can be hard to tell. I have never understood quite so well that the brain sees, while the eyes provide data. Nevertheless, this is on target for the ophthalmologists, who essentially said"wait 4-6 months and call us after that." It turns out that most visual problems resulting from stroke resolve themselves, although that's not guaranteed. I should add that to say they "resolve themselves" is to ignore the fact that I have been exercising particularly my left eye as best I can: what recovery is possible is, in my opinion, accelerated by effort if not initiated by it. Note that it is quite difficult to engage paralyzed extra-ocular muscles.

Which brings me to the one and a half syndrome which turns out to be really quite rare. Rare enough that I was asked if I would mind being in a database of patients with conditions that could be used for live neurology exam questions! Again, this seems to be improving with hard work: my left eye tracks past the midline now, where once it did not at all. Even if it doesn't resolve, I now find that this isn't so bad a thing, by comparison to the diplopia. It's far easier to compensate for, and would be much easier to live with. In other words, my vision overall is troubling me a lot less.

Finally, there's my right-side weakness. Recovering from this goes hand-in-hand with gaining cardiovascular fitness, because it's impossible to do the strength and endurance work necessary without being a lot fitter than a stroke and hospitalization left me. For pure CV fitness, recumbent cycle, rowing machine and treadmill are my staples. The elliptical walker / cross trainer is too hard--for now. With the treadmill, I've been increasing the incline rather than the speed to get an increase in heart rate, keeping the machine at a pace where I can still concentrate on my gait, and not limping. Re-learning how to walk before I run.

Almost all of the work to date has been focusing on walking and balance, somewhat ignoring my right arm. Part of the problem is that my arm is fairly strong--or seems that way with a traditional neurological assessment. But it's not nearly as strong as my brain expects it to be, and it's not strong enough for me to write smoothly. Added to which, my grip strength is greatly reduced, and my fingers are still less sensitive, leaving me clumsy. It's a bit like having two left hands, only the right-hand one is feebler. I've added in seated row, shoulder press and chest press to start working on the arm and shoulder, and next week more grip exercises shall ensue.

Swimming seems to allow me to address the right-side more holistically. Maintaining even buoyancy is instinctive and uses many more muscles of my body than anything else. Added to which, it's almost impossible to hurt yourself just by swimming. So, lots of swimming which seems to be having a generally beneficial effect. 

All in all, I'm definitely feeling better. Today I felt, I think for the first time, more like someone recovering from a stroke, than like someone surviving after a stroke.

(For the non-USians, this was a heeeelarious pun on the President's State of the Union address. A pun I am likely to perpetrate again.)

Thursday, February 9, 2012

Gym, swim and nap

Exercise after a stroke is a funny thing. Initially it's unbelievably tiring, quite literally: I found it very hard to believe how much a short walk would exhaust me, and often needed a nap shortly afterwards. Even in rehab (in Hackney), it turned out to be easy to do more than I was ready for or indeed capable of doing. This resulted in a period of exhaustion that provoked depression, which made it hard to do anything. Less than ideal.

Since then I've been more cautious, but I'm getting less and less so. At the moment I'm finding that the more I do, the more capable I become. Which is why it's even feasible that I've been to the gym four times and had a half hour exercise in the pool after each. This week, I'll comfortably meet the recommended minimum for getting fit (at least 30 minutes, 5 times a week, a little warm, a little sweaty throughout), and I'm no longer so concerned that I'll be a total wreck a day later.

Apart from the general goal of improving my cardiovascular fitness (and substantially reducing the chance of death), one of the challenges is making sure that my right side is doing at least its share of the work. This sometimes means using less weight than I can manage, because too much makes it too hard to get my left side to let the right do the work. It sometimes means painstaking adherence to form, as well: When walking on a treadmill, avoiding a limp; when in the pool rigorous symmetry in my breast stroke. 

For now, it always means that my right side has worked harder than my left, and aches because of it. And because the whole of my right side below the neck is weaker, it often aches in unusual and uncomfortable places. At some point, I'll be able to exercise hard enough that I ache evenly, but I expect it to be quite a while.

One of the oddest things I've found, though, is that my memory of myself in hospital three months ago doesn't include anything like the experience I now have of my hand's relative weakness; nor does my memory of being in rehab. I must have been compensating so thoroughly with my left hand and so far in denial about it, that I couldn't even see it. Just another weird experience from the land of brain events.

Wednesday, February 8, 2012

Most of the last few months I've been occupied with the work of functioning again. Doing things like learning to walk (still a bit iffy) and so on. It has been, I don't mind saying, quite hard work, mostly because my stamina went through the floor when I had those strokes. Two months ago, and I would need a sleep after half an hour's (with hindsight) light physiotherapy. 

Everything apart from the necessary pretty much went by the wayside. Of course, 'necessary' for me included hours spent painstakingly posting, but the damaged brain demands odd things of us after a stroke, and feeling connected can be as important as being able to stand unsupported for 60s.

Now, nearly four months after the "brain event" I can go to the gym and then swim and work up a sweat, be bushed, stiff and sore, but I don't usually just keel over and sleep (although it still happens). Similarly, writing this is a task measurable in minutes, not hours (or days), and won't leave me exhausted.

I figured it was about time I started to pick up some of the pieces that I left in New York, so life is a bit easier when I eventually get home. Unfortunately, less of the fun and interesting neglected friend-related pieces, and more of the AT&T and AmEx pieces. It did not go well.

My advice on the subject boils down to this: don't have a stroke, because most companies are simply not set up to understand the complete interruption to your life that a stroke entails. If you have to have a stroke, don't recover from it outside the US, because most companies--even the international ones--don't believe in addresses outside the US. Go ZIP or go home.

Despite the genuine concern and good wishes of all the human beings I spoke to, their companies' information systems seem designed to depress, threaten, distress, aggravate, and ideally kill anyone who's had a stroke.

Show me the designers, I need to work on the physical mechanics of kicking.

Monday, February 6, 2012

A Minor Mystery and a Small Success

It was slightly puzzling me why I tended to turn left. At the moment, the left lens of my glasses is obscured so I avoid the worst of my double vision. I would have thought I would instinctively turn the other way, rather than into what is, effectively a huge blind spot, but I observed the opposite. (Yes, incidentally, I can now turn around without immediately falling over!)

It transpires, quoth my physio, that the left eye and left inner ear are more associated with equilibrium as one turns right. Since that's the side that has damage (above the neck, at least), turning right is slightly harder and so I automatically turn left. Something more to work on, of course, but mystery solved.

The small success I have enjoyed today was getting into a swimming pool. I've been gradually increasing the amount of times I can go to a (first hospital, then regular) gym, but hadn't yet ventured into the pool. The problem was my balance: Apparently it would not have been surprising if I did a roll onto my side or back and then had enormous trouble with the relative buoyancy of my left and right side. Since I was really quite a good swimmer, I found the prospect of having it taken away from me quite frightening.

Fortunately, although I could clearly tell my equilibrium was off, I was able to swim several lengths learning interesting things. Not only are my right arm and leg obviously weaker, so maintaining good form and swimming in a straight line are hard, but my right hand struggles to make and hold a slightly cupped shape. As a result, I generate less lift (we're talking breast stroke), so it's harder work to breathe smoothly. All of which says that swimming is good exercise for parts that are not otherwise being worked.