Dreaming of Walking, Act II

Monday night I dreamt I could walk again. Last time I dreamt of walking so vividly, I was still being assisted with every step, and the independence I have now was distant.

This time, it was part-way into the dream that someone noticed that I had left my stick behind, but I was walking anyway. The dream was a hodge-podge of Sherborne Boys' gym, and walking (interminably) to see my sister at Sherborne Girls' but the context doesn't matter: I was walking!

At some level, I remember how it feels to walk casually, although my daily experience is of the effort it takes to walk at all, and to analyze which muscles on the right side are not working right, or enough, or at all.

The dream had a cruel irony: on Sunday night, I was too physically tired to walk the 25 minutes it takes to get to a friend's house, and I definitely couldn't have made it back. It was a shame, because playing D&D instead of watching the Superbowl would have been extra-fun. The tiredness was because, on top of doing a lower body workout in the morning, I had labored through the snow to brunch and back.

Lest I give the wrong impression, it has not snowed very much yet in New York; but the little there was made walking treacherous for me, and nearly doubled how long it took me to get to brunch. It was also exhausting. So, no D&D for me on Sunday. Worse still, although I went swimming on Monday morning, I was still bone weary by Monday night, and only just able to function.

It was clear that I needed a day off, and that I need to rethink my schedule to rebalance the exercise that steadily makes me better with the activities that enrich my life. Like seeing friends, playing games, and eating brunch. So I took Tuesday off almost completely, and I'm switching my upper and lower body workouts, so that I'm more likely to be able to walk far enough when I most want to.

Unlike last time, there's no upbeat coda; I'm seeing steady progress, but no great leaps forward. It was a good dream, though.

Swish

I've been wondering for a while why my right leg has been all crook (beneath the obvious you had a stroke surface, of course), and I think I've figured it out and started to correct the problem: it certainly feels like I'm walking better.

When I first started to recover, the muscles of my right pelvis and butt weren't strong enough to support my weight naturally, so they would kind of lock, leading to a sort of stiff-legged limp. They're stronger now, but my gait was still stiff and weird.

I knew that my pelvis was sort of tight, rather than loose and fluid, so I figured that was related. I knew also that my glutes had got a lot of work, and should be comfortably strong enough to support me, but that when I stagger or stumble, it's usually to the right, and my right glute max seemed to be failing.

The problem seems to be that I lacked swish. Although it's not typically obvious in WASPy men (unless we're also streetwalkers), everyone's butt swishes from side to side a bit as they walk. Because at some point I hadn't had the strength to do so, I learned unconsciously to protect against that motion, and never un-learned the rigid protection when I finally had the strength for my pelvis to move.

So, by putting what feels like an exaggerated swish in my gait, I am quite a lot more stable. As I lose the automatic protection, the feeling of exaggeration will mostly diminish, but like with a lot of things, my brain is having to re-learn what to expect from my right side as 'normal,' so it may take a while.

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.

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.)

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.