Stick it where the sun...

I have been known to dream of walking: just strolling, unaided. Not a very exciting dream, but still something beyond reach, for now. When I first had the strokes, I was a falling risk. Then I graduated to a walking (Zimmer) frame, which was ghastly. After a brief period with a quad-stick (also ghastly), I got a walking stick of plain wood.

The stick came with license to walk without company, and serves two purposes: it helps me support weight on the brain damaged and then atrophied right side (which is why I sport the stick in my left hand), and second, it provides a steady point of reference for balance. The first function gets steadily less important as I exercise, my right side grows stronger, and my brain relearns control of the muscles.

Two years ago, when walking any distance was hard, my physical therapist set goals for walking to the pub. I wanted to set the goal of walking that far, sooner, and without the stick. She was sceptical. With some work, I was able to walk at least that far, and sooner. I've just bought a new stick, though. 

My old stick had a split, the new one is a lovely dark chestnut one, with some heft to it. To get a new stick I had to accept that the rate of recovery for the two main functions of the stick is different. I barely need the stick to support my weight any more, but I still need it to keep my balance. Acknowledging that compensating for my lack of balance required the stick, was not easy.

What makes it easier is knowing that although I am compensating now, I do not expect to do so forever. It may be slow to do so, but I will recover my balance eventually. In the meantime, my new stick is handsome (thanks to the excellent Stick Man), and the one I get in June will be excellent, handsome and rather fancy.

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.

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.)

Dreams

I dream of walking.

There are days when it feels like the last two months have been spent trying, and failing, to walk. I long to amble on a clear cold day like today, to stride manfully somewhere, to stroll casually through the Union Square Christmas Crapvillage (pronounced with a French accent, of course). Just to wander up the street for a coffee would make my day, but it's currently beyond me.

The problem is no longer my weakened right side which has greatly improved since I started in rehab. Nor is it that I've forgotten how to walk; my dreams make it quite clear that I remember how. The problem is, and remains one of balance: mine is terrible, and there nothing I can do about it. My lack of balance is essentially unchanged from eight weeks ago. The symptoms are better: I have better control of my musculature and both my right leg and my core are stronger than they were. But the cause is unchanged and I'm still liable to fall over in a stiff breeze.

I can only really describe the sensation to those of you who drink, and who recall drinking to excess. There comes a stage in drunkenness where the imbiber staggers around, the room reels, and he (or she) lurches in the general direction of travel from (presumably) steady point to steady point. When you're that plastered, you are also feeling little or no pain, and have such diminished faculties that the prospect of falling over doesn't really bother you.

Not so with me: The sensation I live with is almost exactly like being drunk, but without the fringe benefits. I am acutely aware how catastrophic a fall would be for me, and I'm very capable of feeling pain. No matter how hard I try, though, my brain is ignoring the message.

The challenge is an all-consuming one. When I stand on a gently sloping surface, I have the very strong sensation that I'm falling in that direction, and unless I actively engage some muscles, I soon will be. This effect has improved with my ankle, leg and midriff strength, but it's still there; I just handle it better.

Sidewalks are not level, and worse they are all new to me and my brain. This is where the hassle of my eyesight comes in: I simply can't assess a potential walking surface at a glance. My one unoccluded eye skitters over the vista jerkily, and my brain forms an image as fast as it can with as much inferred depth information as possible. On a typical sidewalk this is as close to no information as makes no practical difference. The process is also slow, so my two short walks on unfamiliar surfaces were as cautious as a tortoise's.

On Saturday night, I dreamt of walking: I had a new doctor who insisted I wear a suit and dress shoes. I could tell he was an American doctor by the white coat and the gaggle of be-coated students and acolytes. He bade me walk, and I did, relishing the feeling of a good stride and the leather soles of dress shoes on stone flags. I realized suddenly that I was walking with ease, and that this was because I could see with binocular vision. Then I realized that I could see again because the occluding film had been removed from my left lens. Finally I realized that I could not remember removing the film, and must therefore have been dreaming. I woke, and checked to see if my vision was working, again.

Last night, I dreamt of walking: just walking. I guess it was a boring dream, but I loved it. Of course I checked my eyes when I woke.

Today I was allowed to walk a little, unaided.