Leaps and Metaphorical Bounds

In an earlier screed, about the received wisdom of doctors, I promised some personal anecdotal evidence of recovery.

Six months after having strokes I was told by an eminent neuro-opthalmologist that it was very unlikely that there would ever be a change in my eyesight or balance, and thus my walking. Happily, I thought "bollocks," and carried on (perhaps I should make that a t-shirt).

Over the last three years, recovery has been slow and, on a daily basis, imperceptible to me. I can look back a month or six, and see improvement, but yesterday usually looks just as crappy as today is and tomorrow will be. There have been a couple of times when something has changed in a noticeable way.

One such change happened a few weeks ago, about a fortnight before the third anniversary of my strokes. Let me be clear that this is not an instance of my suddenly noticing a slow change, but rather a dramatic—for me—shift, where I had to figure out what had changed and why it made things better. Again, this happened three years after my brain was first damaged.

Until then, I realized, although I have worked to make my affected right leg function well, it was not able to bear weight. My center of gravity, therefore was shifted left, and hard to control. Since then, my right leg is able to take my weight some of the time, and as a result I have greater control of my center of gravity, and my body.

For me, this is a huge change, with substantial benefits (I walk better, turn more easily, stagger like a drunk less), and it is not muscular: my musculature hasn't changed. The change was in my brain. Pathways were permanently dedicated to this function, doing the work of brain matter destroyed by the strokes.

The net result is that my balance has improved, at least as far as the outside world is concerned. It's hard to tell whether my sense of balance has improved, I think it has, but my effective balance has indubitably improved. This doesn't contradict what the eminent physician said, but I do not think I am physiologically exceptional, nor do I think that recovery is unlikely. Hard? Yes. Slow? Hell, yes! Unlikely? No.

I am lucky: physical impairments are more simply overcome than cognitive ones. The damage was also to my brain, not severing any nerve fibers, which is a hell of a lot harder to fix. Nevertheless, my point is this: recovery is possible. It continues to occur, and occasionally, it takes sudden leaps, long after any damage first occurs.

Three Years Not Dead

My first strokes were three years ago, today; it's time for an update. I'm not sure whether to lead with good or bad news, but here goes:

First, I'm not dead. I think that counts as good news. 

Then there's all the stuff that is still a problem: I have double vision, oscillopsia, weakness and a tremor on my right side, and a facial palsy. I may be forgetting something obvious to others, but regardless, that's some of the not-unexpected not-good news. 

A lot has improved. I walk better; I have to go outside with my stick, but I still walk better. I'm fitter: two and a half years ago I was hard pressed to swim 25m without a break. Yesterday I swam just under 3km without stopping. That's good.

Some things, it's hard to say either way. I've been very depressed at times over the last few years. Sometimes because I have been flat broke, more often because recovery is slow, unpredictable,and hard to measure without the right equipment (see: broke). Right now, though, I'm not depressed. I'm swimming and going to the gym, I'm getting out a bit more, and even going on some dates. 

Mostly, things are relatively good, for now.

I've been thinking recently about 3 years ago, and how bad I must have been. Bad enough that it's taken 3 years for some of the people who saw me right after the strokes to admit how terrible I looked. Bad enough that I signed a surgical release on the first day, because they were mooting surgery to stop the hemorrhage, and bad enough that I spent eight days in intensive care. I have bad enough brain damage that three years on, recovering from brain damage is my principal occupation. 

Oddly, I suppose, I don't think of the brain damage, and associated problems as health issues. Hypertension, which probably caused the strokes, is a health issue, and one I'm being medicated for, but the neurological damage just doesn't seem to fit in that box. If you set the brain aside, I'm healthier than I've been for ages. 

I'm used to being the guy with a stick. Used to having wretched balance, to avoiding crowds when I can, and to absenting myself when I must. The exhaustion that comes is not, I think, peculiar to stroke, but is instead a feature of the learning brain, and thus it is inevitable when your brain has been damaged and recovers. 

I care less about mores. Again, this is not an aspect of my particular damage, but rather behavioral: I don't talk as much as I want, so I talk more to strangers, I'm nosier, and I share my dubious wisdom liberally. Writing is hard, so I run my mouth, which is easier. Disabilities are a great cover for this new habit: strangers can safely assume that I'm funny in the head, and who would hit the crippled guy anyway?

I can't say that it's been a good year, but it has been about as good as it could have been. 

Spring 2013 Monthly Update

It's time for another monthly update, and I looked back at my first March update for an idea of how I've progressed. In one thing, my weight, I've taken a step backwards, since I'm heavier now than I was then, but my pants (trousers) still fit, and I'm pretty sure some of that weight is muscle mass, since I am stronger now than I was then: I have the record from the last ASPIRE session, and where I was doing a lat pulldown of about 35lb (it was all in kg), now I do them at 140lb. Also, I'm pretty sure I couldn't do two sets of eight pull-ups then, so by that simple measure things have improved.

A friend pointed out at a birthday party on Saturday that I seem to do much better on pull exercises than on push ones. Apart from the fact that we were talking about fitness at a pancake party, this makes a lot of sense: the push exercises I do are almost all dumbbell exercises that take more stabilization than the pull exercises which tend towards raw strength. If I can strengthen the stabilizing muscles with pull exercise, then I might be able to accelerate recovery of the pushing motions. The push is already improving though; a 20lb dumbbell bench press is now as stable as a 10lb once was, and a 30lb dumbbell press as stable as a 20 used to be (not very).

I used to be able to bench over 200lb, but barbell exercises tend to use more weight, anyway, and I went and had a bunch of strokes, so it's no great surprise that I'm just managing 30% of that weight with dumbbells. Another reminder that comparing my performance to that of 20 years ago is stupid, futile, and a sure way to be disheartened. Now, I just make sure I'm improving week on week.

When I wrote an update a year ago, it was before the neuro-ophthalmologist said my eyesight and balance wouldn't improve and I said that:

My guess is that the maculae will get lined up first, so I have binocular vision at the focal point, and then the eyes will work on twisting so they have the same horizon, and my hope is that somewhere in there, the oscillopsia will go away. Hope springs eternal.

I still think I am right and the neurologist wrong, because my balance has improved, and my diplopia is gradually improving, contradicting him. The diplopia is muscular, so I still see no reason why it shouldn't continue to get better. Unfortunately it's pretty binary, like the tremor: it can improve lots, but until it's gone, it's as wretched as ever. I'm going to try to post soon about how I see the world at the moment, which might explain why, although these posts seem cogent enough (I hope!), working is extremely hard. I wouldn't hire me!

The irritation with nomenclature must be seasonal, because it bugged me a year ago, too. I still think it matters, though: once you've established the cause of a stroke, and are treating it, the person concerned is left dealing with the brain damage, and that's the more significant long-term thing. It also means that we can recover. As I've said before, if I'm outpacing a baby born when I had the stroke, I'm happy.

I'm doing less physically than I was a year ago, on paper, but at the same time I'm trying to lead a regular New York City life. It turns out that my life back in Dorset relied very heavily on other people doing things for me, and a lot of sitting down recuperating. Here in NYC, I've found that I don't yet have the endurance to lead a full, busy existence, so I'm getting used to leaving early, caffeinating with care and exercising a bit less, while working a bit harder generally.

On the material plane, things are rough. I just heard it's going to be at least a month before I get any Disability Insurance loot, and even then it's not certain. That means its normal for the process to last nearly a year after an event. (Six months before you can apply, then four months processing, then at least a month handling, plus go-see-our-doctor trips.) This is insurance for people who can't work; I have no idea how anyone is expected to go a year without income. I've survived through the generosity and kindness of family and friends, I don't know how else one does it.

The wait puts me in a strange sort of Schrödinger's Cat state of being broke now, but potentially fine in a month or so, which is weird and uncomfortable. I hate not being able to get my metaphorical round in, but I have to accept my reality at the moment, just as I accept that I can't go out without a stick, my fight hand sends coffee flying, and my eyes are weird. For now!

Sucky Progress Report

Several weeks of progress report obviously went missing largely because they sucked. I've gained a bit of weight (which I don't care about that much), and just not been to the gym or swam enough, let alone written enough, and so on.

Part of the problem was undoubtedly that I was off my depression meds for about two weeks, which was plenty long enough to start feeling the effects. It was all due to a preposterous series of cocks-up between my nearest pharmacy (the slowest Rite Aid in the world) and my doctor, and is at last sorted out. In the meantime I discovered that, even knowing that short-term discomfort or not-fun was better for me long-term than short-term pleasure intellectually, without the anti-depressants I made the wrong choice every time. With them, I make better choices.

On the other hand, I've noticed several small improvements that tell me that, slowly but surely, I am recovering. They are all attributable to some activity on my part, about which more anon, but they are still happening.

Valentine Update

I'm combining this month's update with last week's goal report, both of which are late. Saturday and Sunday the snow kept me housebound: there was a lot of it, and it wasn't cleared enough for me to walk on without too great a risk to limbs, ass, and dignity. Not that I give much of a damn about my dignity any more. 

Monday, I thought it would be clear enough to go all of two blocks to pick up yet more drugs from Rite Aid. This thought was a mistaken one. The two blocks there and back were so wretched in the rain with uncleared sidewalks, half-block detours, near calamity and general precipitation induced misery that I gave up on the whole day and wrote it off. So three days of playing XCOM ensued. Not a complete loss, though, because I have discovered that console games improve my right hand's dexterity and sensitivity. Good thing, too, since XCOM is so damned good. 

Today, Tuesday, I was back at the gym, and stronger, if unsteadier. Before I went, I could hear the start of that siren call to indolence, but quashed it easily. I did wonder if that was how the depressive slump could start though: obsessive interest in something distracting, initially with a good reason, but soon disregarding the flimsy pretext for being sedentary. 

To the update:

Vision hasn't changed noticeably, but my left eye is coming closer to closing. There are signs of life in the lower lid, which seems to be closing at night. It doesn't blink so well, and it's a son of a bitch to get moving, but I'm certain it's attributable to acupuncture. No change in the oscillopsia yet, nor obvious change in the diplopia, but I'm seeing an ophthalmologist soon, so who knows what that may bring. It turns out the video of my one-and-a-half syndrome is still on tape on the neuro-ophthalmologist's desk, but when it's digitized, expect a link!

My left facial palsy is gradually lifting, again thanks to acupuncture. It's a bit weird having all those needles shoved in my face, but it's working. I still only smile with the right side of my mouth, but I'm confident that the left will join in soon.

Toiling away in the gym and pool has been improving my strength and endurance, but the right side weakness still exists. It's really noticeable doing something like a dumbbell chest press, where my left hand lifts the weight smoothly and cleanly, but the right hand wobbles and the arm begins to struggle sooner.

Balance has definitely improved, most clearly visibly at the gym, again, where I can now actually do standing dumbbell calf raises without falling over (mostly). I seem to be swaying backwards and forwards, though, even when I have a steadying point under my hand. This swaying explains a lot of the apparently random pitching forward and stepping back that I've been doing, but I'm currently at a loss to correct it. 

The period of the sway does not match the period of the tremor, which I think is improving, again thanks to acupuncture. One of the needles in particular hurt like hell in time with the impulse to twitch, so maybe the needles are reconditioning my arm not to move in a bad way. Who knows? I still slept for two hours solidly, pain or no pain, so the needles were doing something!

The exciting new discovery is that I'm slightly deaf in my left ear. Not enough for me to have noticed before now, but my snoozing alarm increases in volume, and I realized that I could hear it first through my right ear, even when it was closer to my left. It's not a huge deal, so I'm not worried about it, but it is consistent with the theory that I have some left side vestibular damage.

All in all, not too bad, considering that a year ago I was just starting to add some weight machines into my gym routine, and leaving my stick behind in the gym was pretty scary.

I should thank the anonymous benefactors who got me hand grip strengtheners and a pull-up bar from my Amazon wish list; I have used both and they are doing me good! I haven't figured out how to find out who was that kind from the interface, so they are anonymous pro tem.. 

Finally, here's the week's progress report. Three days off mean a big fail on most of the goals, but snowpocalypse and I saved humanity from an alien invasion, so I think I'm allowed.

Weight Goal: 170lb. Last week: 198lb, this week: 197lb.

Exercise Goal: gym 3-4x, swim 2-3x - This week: M:swim, T: day off!, W: Swim, Th: Upper, F: Swim, Sat/Sun: snow

Meditation: M, T, W, Th, F

Tai Chi: M, T, W, Th, F

Stretching Goal: after every gym - Th,

Writing Goal: write at least one word a day on Project #1: M: 42, T: 0, W: 68, Th: 46, F: 117

Superbowl Goals (Week 2)

So the stretching (which I didn't manage at all) last week, has been pretty lame. I need to get back to my regular routine. I deleted everything I wrote on Tuesday, and started again on Wednesday, and that's clearly visible in the numbers. But I had to do the frustrating experiment on Tuesday to find the clearer path for the rest of the week... and then I got XCOM, and Friday and Saturday went to hell, and Sunday is always a busy day. In fairness, what I am writing right now is very hard but at least I got my head down and did some.

Speaking of having my head down, it looks like my nose was well in the trough this week, making my weight goal the only one I failed. Eh, whatever. I gained muscle mass, and the weight will come off eventually. Stretching on Saturday was pretty perfunctory, but I did it. These goals will do for another week: If I can keep them up and play XCOM as well, I'll be in good shape.

Weight Goal: 170lb. Last week: 196lb, this week: 198lb.

Exercise Goal: gym 3-4x, swim 2-3x - This week: M:swim, T:Upper, W:swim, Th: Lower F: swim, Sat: upper, Sun:lower

Meditation: M, T, W, Th, F, Sat, Sun

Tai Chi: M,T,W,Th, F, Sat, Sun

Stretching Goal: after every gym - T, Th, Sat, Sun

Writing Goal: write at least one word a day on Project #1 - M: 377, T 83, W: 329, Th: some, F: 32, Sat: 34, Sun: 42. Total: 897+some.

Goooaaaal!

I met four out of five goals that I set myself this week. I lost 1lb, which is less than I'd like, but in the right direction, so it will do. I exercised every day this week, sat in meditation every day this week, and wrote some of Project #1 every day. I'm happy to have done all of those, but don't want to change them for next week, because although they are lowball goals, and I exceeded them, I would rather have a consistent, simple set of goals for several weeks running before making them any harder

The idea is to sustain what I'm doing, and sustaining these activities for a long time is more of a challenge to me than making them more challenging for the short term. In other words, I think I'm more likely to succeed over the long haul if I'm gentle to begin with.

Besides, there's the goal I didn't meet, which was to stretch after each gym session. I'm going to leave that where it is, and keep working towards it. I have an idea where the failure point is (it involves hot coffee and cold weather), and want to see if I can get back to making stretching regular.

UPDATE 1/28: I changed my mind. I'm going to add another lowball, easy target: do 5 minutes of Tai Chi every day. It's only 5 minutes, it's clearly beneficial, and I stopped doing it... why?

Weight Goal: 170lb. Last week: 197lb. This week: 196lb

Exercise Goal: gym 3-4x, swim 2-3x - This week: Monday: swim, Tuesday gym (upper body), Wednesday swim. Thursday gym (lower body), Friday: swim, Saturday: gym (upper body), Sunday: gym (lower body)

Meditation Goal: sit every day - Days sat: Every day this week!

Stretching Goal: after every gym - Tuesday

Writing Goal: write at least one word a day on Project #1 - Monday: 259, Tuesday: 297, Wednesday: 463, Thursday: 284, Friday: 303, Saturday: 14, Sunday:130. Total: 1750