Fear is the Recovery Killer

For most of the last three years, since I first got brain damage, I have lived with fear. It's a fear that is not likely to go away in a hurry either.

It isn't the fear of having more strokes; I certainly don't want any more, but I am not afraid of more strokes, and they're pretty unlikely.

I'm not often afraid of my vulnerability, either. I am an easy target: I can't run away, and can't defend myself, except to flail with my walking stick, which is as risky for me as anyone else. I have been*, but tend to avoid any situation where I might be again, so it's not a constant issue for me.

Most of the time, I'm afraid of falling. Whenever I get up, walk, climb a stair, step over a leaf, turn around, carry anything or take almost any action, I'm afraid. It's hardly paralyzing, but it is always there. I can avoid it by swimming, or sitting and lying in one place. I do plenty of those things.

The fear is based in rational thought, too: I'm 5'8" and weigh over 180lb**, and if I fall poorly it is going to hurt, even if nothing gets broken. Small children with the same level of coordination as I have enjoy a much lower center of gravity, more padding, and less mass. Gits.

Poor me, right? Sod that. What's worse is that the fear inhibits me. I'm afraid that if I walk up a stair with nothing to hold on to, then I'll fall over, or be at risk of falling, so I hold a rail or touch the wall and don't take the risk.

As I get better, and my motor control improves, though, the danger is that I still take the safer path. That I take the lower risk path with compensatory motion, rather than the more challenging, but ultimately more rewarding, high risk path of recovering function.

I have definitely noticed a tendency to safety that sometimes exceeds my ability. To keep getting better, I have to keep pushing myself in awkward ways. I can't let the fear rule me, because it isn't going away in a hurry, and it shouldn't, but it's not the boss of me.

* I was threatened anonymously. The risk to me that the threat was real, no matter how risible, was too great. I had to remove myself. He won, by threatening violence.

** For now.

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.

Scoring Goals

Two years ago and change, I had a clear goal: I wanted to get home. It was not very generous to the home I had lived in for most of the recovery until then, my father, stepmother and sister's home. Nor very generous to them, or the many people around me who were invested in my recovery. Nevertheless I wanted to be well enough to go home to New York City, where I've lived all millennium.

Without realizing, I had a clear and attainable goal for exercise, and through exercise, recovery. Returning home, though, has been a problem. Sure I have a ton of friends here, and a great support network, but my goals for recovery have been too distant, and I have often failed completely and fallen into a mire of doubt, depression and inactivity. My goal to walk on my hands again is too far away to be useful.

I also have a different perception of expectations here in New York. When I don't go to the gym or pool, then I feel as though I'm the only person who suffers. Back in England, I feel more keenly that I am disappointing the people around me. It doesn't make a lot of sense: people in the US are just as invested in my recovery, and people in the UK are invested regardless of where I am (not to mention those elsewhere). It may not be wholly rational, but I find it easier to exercise in the UK than in the US.

Of course, since I'm aware of the problem, I'm trying to fix it, but setting a goal that makes sense is hard. Right now, I'm lucky: I have a definite date by which I want to be in as good shape as possible. That means swimming 3-4 times a week, and going to the gym 1-3 times weekly. Or I fail. No excuses, no alternative.

Come January, though, what then? Goals to lift weights aren't very useful to me. I already swim for at least an hour and a half, non-stop. What next? Something attainable, achievable through diligence, beneficial. If I think of something, I'll let you know.

Received Wisdom of Doctors

Don't believe it.

Some of the earliest advice given to me after the strokes* was to doubt received wisdom. I have found that advice to be good, for several reasons.

First, most people don't really get probability; that's why casinos work.  When something is classified as "very unlikely," it is important that the possibility still obtains: "very unlikely" is NOT "impossible." Recovery is possible.

Second, doctors don't know everything about the brain, although they are usually in authoritative positions. As much as we would like to get answers about our brain damage, and as much as we expect doctors to have those answers, they don't. I'm not saying that they're not experts, but research into the fundamentals of the brain is still happening. They don't have all the answers; nobody does.

Third, the physical brain and the insubstantial mind are related. They are not separate nor separable things. Some brain damage causes changes in personally, beyond the behavioral changes that are an inevitable consequence of having brain damage.

Fourth, recovery takes a long damn time. A lot happens that doctors never see, and rarely perceive. They often have too many patients, and are not geared to detect the slow, steady improvements that are a feature of brain recovery. By and large, our changes are not going to appear in blood, urine or even spinal fluid samples. A specialist might see you once in the first six months and never see the small daily improvements, or the hard work that goes with them.

Thus far, it is not possible to deny anything I've said. That truth should be enough for anyone. I'll speculate: The thought that recovery is possible is necessary, but not sufficient, for recovery to occur.

When we do not think recovery is possible, it is unlikely to occur. The brain evolved for efficiency: use as little energy as possible to perform tasks. Don't train both hands to be deft, stick with a dominant side, for example. This is antithetical to recovery** which requires that we do things poorly again, clumsily , slowly and awkwardly to learn how to do them competently and even well once more. When we don't think there's any point to doing things the hard way, then we don't and an opportunity for recovery, instead becomes further reinforcement for compensation. The thought that recovery is possible is necessary.

It is not enough, though, just to sit on your tush and think "I can recover!" to yourself. You have to do something about it. If you have brain damage, somebody, somewhere has said "use it or lose it" to you***. Recovery goes further than that, it requires that you force yourself to do things the difficult way, it is often tedious, and it mostly sucks. The alternative, inaction and stagnation, is worse. I'm lucky: the damage I have is not cognitive. I can fix physical things comparatively simply. I must do the work, though.  The thought that recovery is possible is not sufficient.

Medical professionals use phrases like 'very unlikely' with experience, compassion and precision. It was unlikely. Believe that very unlikely means impossible, and it will stay unlikely. I dare you, instead to give them the lie, be the exception, and change the statistics, because recovery is possible.

In an upcoming post, I'll give you more personal anecdotal evidence of recovery. It surprised me, three years on.

* By Nigel, who had had his stroke six years before. He'd left in-patient rehab (and been written off by insurance, therefore) able only to wriggle the toes of his afflicted side. He walked into my hospital room.

** Although it is consistent with compensation, the side of rehabilitation I largely reject.

*** If they haven't yet, they will.

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.

Rehab, recovery, compensation

When a brain is damaged on one side, as is often the case with stroke, there are two routes to rehabilitation: compensation and recovery. I'm trying to compensate as little as possible, and recover where I can.

In either case, the goal is essentially the same: for the person with the damage to regain some lost function. For example, I have a tremor on my right side, my right side is also weaker and less coordinated, and I am right side dominant: this makes writing difficult and slow. (Typing, too, since I've been touch-typing for over 20 years ) So one goal of rehabilitation is to be able to write swiftly and legibly again.

I could compensate by learning to write with my left hand. That would not help with typing, but in time I could probably make my left hand as adroit as my right was, despite its ingrained gaucheness. I don't want to do that at all, and not just because it is likely to be a huge pain, and learning to write the first time was boring enough.

The path of recovery that I've taken instead means getting my remaining brain to assume the functions that the damaged (dead) bits used to (a lot easier for neuromuscular issues than cognitive ones). Given how tedious it was to learn to write in the first place, and that I already know how*, recovering my hand and arm function by writing repeatedly would be dull and not very productive. Writing is a relatively fine motor skill. Not as fine as sculpture, say, but finer than I am capable of performing without trembling.

To eliminate the tremor, I need to train my brain to use new pathways that activate the muscles smoothly, rather than rely on existing neural pathways that try to use absent brain matter, and by overcompensating set up the tremor. That means doing things slowly, even for my right side, which is already visibly slower than the left. All of which comes down to doing exercises in the gym that work the muscles that correspond to missing brain tissue, and working slowly, with attention to the form more than the weight and to not trembling.

Happily, it is possible (though likely harder) to recover after many years of compensation. So it is hardly the end of the world when I decide to 'just do' something. It is, however, very easy to slip into a habit of compensation when recovery would be preferable. A change of scene, going out of any familiar environment, serves well to remind me when I am 'just doing' more than I thought.

One of the shortfalls in many approaches to rehabilitation is the desire to get patients to the next place as fast as possible, ultimately to get them home a.s.a.p., where we become someone else's problem. In my case, although I met (just) the physical requirements of being able to wash myself and to get upstairs, my balance was so poor that I could not be discharged from hospital, since I remained a falling risk. In the UK, the physical requirements include the ability to make a cup of tea, and then to carry it. In both cases, while physical and occupational therapists might want a patient to recover, compensation is so much faster and often easier, that is the only option in the time or budget available.

This approach sets up a number of inaccurate and unhelpful expectations in the person who has brain damage. I believe in an honest approach, no matter how uncomfortable. Too often, the reality of recovery is concealed: it is possible, but it takes work, and it is often imperceptibly slow. 

But recovery is possible.

* Not guaranteed after a stroke: I met someone who had spent much of her life teaching kids to read and write, then teaching others how to teach kids, who lost the knowledge of how to write. I can't imagine how appalling that must have been.

Small Changes, Big Difference

One of the difficulties of neural recovery is that it is excruciatingly slow. The moments of sudden or dramatic change are behind me, I suspect, although there's one area that could mean a big difference. On a day-to-day basis, though, and I have no choice but to live with myself daily, I see no change.

Of course, the reality is different: every day there are minuscule improvements in my brain, which means I'm slightly better at walking, or talking, using my right hand, or my left eye. Unfortunately, they're so tiny that they are practically immeasurable. I mean that specifically: it is not practical to measure the changes. I don't have an fMRI handy, and I don't want to spend time each day hooked up to one, thanks.

Being unable to see any progress (even when it's happening) is a bit of a downer. More often than not it is frustrating to the point of depression. That's when I'm most likely to disappear down a hole of video games and comic books, only to realize three months later that I've swelled by 40 lb. and it gains me little to have epic mastery of Mass Effect and fearsome skill at Dwarf Fortress. (It doesn't gain me nothing in recovery terms, but more on that anon.) I wish I were joking, but that's precisely what happens when I suddenly go quiet for a while. I have not run out of things to say, believe me.

What I have tried to do, instead, is measure things that are related to, and promote recovery, but whose results are not directly correlated with my brain working things out. Gym and pool exercise is measurable, and exercising regularly has other benefits, like living longer, and having your later years not be so miserable.

Nothing is as effective as time, though: a change of environment to somewhere I've been before, after months away, throws the changes in my ability into relief. It may be slow, but improvement has happened, and continues to happen. The trick to staying sane is remembering that change, however glacial, is constant, and that it's up to me to make sure it's change for the better.

Reading For Pleasure

I learned to read when I was 2: my Mom was pregnant with my younger brother and bed-bound for much of the pregnancy. By the time I was 6, I could read a story-book upside-done, to the "little" kids, so they could still see the pictures. I read The Lord of the Rings when I was 10, after being told i was too young; I brought my Dad's volumes to school, since I couldn't take a copy out of the library. After that, I was allowed to read anything I wanted. 

In the same library, before I was 13, I was the first person to read the multiple volumes of the "Tales of 1,001 Arabian Nights" that had been gathering dust for about 80 years. I know, because I had to cut some of the pages (after I learned why some of the pages needed cutting, and why it was OK). 

By the time I was 17, I would re-read The Lord of the Rings in a weekend, though not sleeping much on the Friday and Saturday nights. I didn't know it then, but the escape that book offered was a coping mechanism of sorts. On a long train journey from Bangkok, I read War and Peace; I had to spend a few hours finishing it (and I skipped the second epilogue, which is too obvious if you read the book in one sitting). 

As an adult, I would read light fiction in an afternoon, anything more complex in no more than a week. Interrupting me while engrossed in a book was a good way to shorten my temper, if not make me lose it altogether. Books were a pleasure to be savor end and relished. I was almost never without one.

I've read Dickens, Chaucer and Milton, but not Joyce or Spencer; Tolstoy, Chekov, Solzhenitsyn and Dostoevsky, but not all of their great works; Rousseau, Diderot, and de Sade. I have read reams and reams of 'junk' some of it good, some of it utter crap, but I have stopped reading very few books in my lifetime. I own thousands of books, and have given away or left behind thousands more.

So, I think it is fair to say that reading has been a significant part of my life. 

That all changed when I had the strokes. I've written about and illustrated the visual deficits before, but never really detailed why they make reading so much harder. The diplopia doesn't make a lot of difference, since I'm occluding one eye. However, with One-and-a-half Syndrome it means that now I move my whole head more than just my eyes.

The biggest challenge comes from oscillopsia. Because my eyeballs move up and down rapidly, it has become very hard to read a longer line of text unaided. Larger text (available from libraries or eReaders) is less useful than greater leading (not usually an option), although it is a bit better. Small, dense print is effectively illegible.

Unfortunately, reading is now much harder work than it used to be.  Before, I might comfortably read a quarter of a book at night, now I'm lucky to read a chapter before becoming too tired. Audiobooks offer a solution for new books, but my pleasure has been in the reading itself, and hearing someone else's voice interpret text is no fun.

With either an eReader or an audiobook, there is also the problem of the thousands of books I already own, and can't afford to replace in other formats. Reading one of the books I've kept allows me to experience the world in a particular way, to enjoy a certain tasty idea or be thrilled by crunchy repulsion again, or just to find something new there that I hadn't perceived before.

The difficulty I have with reading is all about the physicality of the process. It will improve with time and practice. For the moment, though, it pretty much blows, and I've seen no way to restore what was lost. It's one of the areas where my stubborn insistence on recovery over compensation costs me most. TV isn't as good. 

Recovery Blues

About two weeks ago, I swam 4km, without pause, in just under a couple of hours. I was pleased with myself. Then a conflation of circumstance provided a good excuse not to go to the pool or gym for about two weeks, setting me on a vicious circle that I will try to illuminate. Our demons have less power over us in the light of day.

There seems to be no escaping the fact that recovery is so slow most of the time, that it feels as though I'm making no progress. Nearly two years after the strokes, I feel, if anything, in a worse place physically than a year ago. This is objectively false. A year ago, I could not swim for two solid hours. That doesn't alter how I feel about it though: my brain is pretty stupid and impatient. Unless I actively work to contradict this feeling, it reigns. 

Then there the deficits that are most debilitating, whose changes are so slow that I have to wonder whether I'm improving or delusional. Physical strength is relatively easy, wobbling eyeballs and shaking arms are hard. I have to sustain a high level of trust that these things are improving, and will continue to do so, although there's no way to verify that there is any change. 

So, I'm already facing a struggle up a slow hill. Add in the unfortunate reality that it takes about three days of rest before I have deteriorated enough physically to notice a reduction in function, and the struggle is Sisyhpean. The memory of how easy things used to be, the casual eptitude of the people around me is Tantalizing. To stretch this analogy, whenever I feel like I have accomplished something, the eagles of depression come and feast on the liver of my optimism. Prometheus-like, it regrows, but not overnight. 

When I take a longer rest from exercise, as little as a few days, I don't want to start again because my progress is so slow, and so easily reversible that it feels pointless. Worse, I know that starting again means never stopping. Not, at least for more years than I can effectively compass. There is no end state. I can tie my activity to other goals, but recovery itself is too elusive to have meaningful expectations. 

The only refuge, it seems, is to be bloody, bold and resolute. Rationally, I know that I am better now than I was a year ago, and so I must let Reason dominate while Emotion endures. Boo-hoo.

Taking Fatigue In My Stride

Last week, I worked quite hard: I swam on the five weekdays, for a total of a hair under 10km, and then went to the gym at the weekend. I went to acupuncture twice, and managed a few social engagements as well. After each bout of exercise, I felt 'good' tired; my muscles felt like they had done some work, but not sore. I might be a bit achy the next day, but I hadn't overstressed anything.

I have to watch my overall level of tiredness as well as, though. If I do too much on one day, then I'm often much less effective the next day, sometimes to the point of being a total spud.

Having to watch my fatigue is often counterintuitive, because I'm gauging neurological tiredness, and we've evolved to be better judges of muscular states. Pumping a bunch more adrenaline out is not going to help me escape the hungry lion, if it's my brain that is not going; my legs are still going to flail about.

The problem with taking too much rest is figuring out how much is 'too much'. If I don't stress my system just the right amount, then it will take longer to recover. I am already comfortable with the notion that it will take years of work to get better, but if I can shave months off that time, I want to.

So, yesterday, on Monday, I had to decide whether to go swimming or not. It was a crappy rainy morning, which definitely influenced my mood, but rain often makes the pool less busy. Muscularly, I was a little sore, but I expected that after working out my upper body on Sunday. However, I felt tired yesterday morning, and decided not to go, full of misgiving that I was just being lazy and self-indulgent. I spent much of the day feeling itchy to go swimming, but tired enough to take a short nap.

It was the right call. I'm sore today from the Tui Na massage I had yesterday, but I just swam two and a half kilometers, and I feel 'good' tired again. Sore, but ready to go again tomorrow. It wasn't the first time I've had to make that call, it wasn't even the first time I made the right call, and it won't be the last. I'll be making those calls for years to come. I just hope that I get a little better at balancing efficient recovery with living a real life.

What Video Games Taught Me About Brains

I used to play World of Warcraft. It's a long story and all Justine Larbalestier's fault but by the end I was raiding seriously four times a week, and casually a couple of times, too. I quit when I'd got a world ranking in a fight, but was bored and offended by Blizzard's content in the Cataclysm expansion.

I killed this guy. A lot. Took his stuff, too.

For my current purposes it doesn't matter why I quit, only that I played the game seriously, and I was good at it. I used a mouse that had 8 or so buttons, and combined with Shift, Ctrl, and Alt keys could cast spells and run commands with a combination of my left hand on the keyboard and my right on the mouse.

Long before I quit, I was not thinking "I should cast this spell, so I should click that button with my right thumb while holding down Ctrl with my left pinky." Instead, I was just thinking "cast this spell," and the rest was taken care of by muscle memory.

The idea of muscle memory is familiar to most people: musicians drill scales, dancers learn sequences of moves, gymnasts learn floor routines, and video gamers learn to do what the game asks of them with their controllers. Whether it's casting spells or driving cars, at some point players go from thinking "press X" to thinking "accelerate" because muscle memory takes over.

Driving a car is a good example of this process, whether in the virtual or physical worlds. Drivers' responses become automatic, eventually. You notice this in new drivers when you stop crapping your pants every time they get behind the wheel.

Of course "muscle memory" is utter bollocks. Your muscles don't remember anything. That's not how they're put together, not how they work, and not what they do. It's not the nerves activating the muscles that remember, either. It's your brain that's doing the magic, and it's a bit more involved than just remembering how to do something.

It turns out that there are several layers of intention and execution between thought and act. At a high level, the mind is thinking "reach for that glass" and that impulse is translated into arm and hand movements, and thence into the appropriate muscle contractions. If reaching for glasses is something you do often enough, then the whole process gets optimized by the brain. You really notice this in driving when not only have you optimized the various actions of driving, but you have travelled the same route so often that the whole journey is an automatic sequence that you don't remember carrying out.

Who cares? I do. Because as well as remembering keyboard fingerings from my teenage years (I'm sure I could still dock in a Dodec at full speed), my brain learned how to be very good at WoW in my late 30s. In other words, far from the idea that our brains are done with developing in late adolescence, they still go on adapting and making physical changes to optimize our performance against the outside world far into adulthood. A leopard may not be able to change his spots, but a human can change his brain.

This matters to me because it means that recovery is not only possible, but inevitable given the right conditions. My job at the moment is finding those conditions and ruthlessly pursuing them. Games are part of the solution, too: they are a compelling medium in which the player frequently repeats physical action intently, has to get them right, and has to pay attention to the action and the result.

Sadly, this is where my frustration with the video game industry and the medical industry lie: for opposite sides of the same coin. Recovery games are shit as games. They're boring. Normal games miss the opportunity to make their players interact in ways that make them more physically active in good ways.

I'm still not going to touch WoW again with a 10' pole, though.

Stroke Survivor? Victim? Sufferer? None of the above.

Within a week of having the first stroke, the nomenclature around it vexed me. "Stroke patient" worked while I was in hospital, but that was it, and the terms that replace it are rubbish.

I can't abide "stroke victim." The brain event I had didn't select me for victimisation, and I'm not now, nor have I ever been, a victim of any singularly malign force. I had the stroke because I was fat, lazy and have a genetic predisposition to high blood pressure that, coupled with my obesity and sedentary indolence made my head explode. No victimisation there.

Whenever I hear "stroke victim" I am reminded of a scene in the movie Addams Family Values, where Wednesday is trapped at summer camp and is enduring a swimming rescue lesson. She's shown on the end of a pier in a black Victorian bathing costume, next to her tween nemesis, the preppy, peppy, pretty bland and blond girl. The instructor asks for a volunteer to be the victim. The blond girl's hand shoots up and she squeals "me, me, me." The camera cuts to a close-up of Christina Ricci deadpanning "all your life."

The popular alternative is "stroke survivor." I reject this because it's tautological. I'm either a stroke survivor, or I'm dead, and if I were a corpse, you wouldn't be reading my writing. "Survivor" is way better than "victim" but it's  still rubbish, because it adds nothing to the conversation.

Until recently, I had settled on "stroke sufferer." There's certainly been some suffering involved; recovery isn't really that fun. The term is at least accurate, but a problem still obtains: the word "stroke." Having a stroke is significant, and it matters a lot when the underlying cause is strange and unusual. But seventeen months later, I find 'stroke' as a magic word troublesome. Sure, I will use it to my advantage whenever I can, because frankly, I need the help and consideration, but it implies that there is something particular and unusual about my condition, and I see that as more of a problem than a perquisite.

I'm not recovering from strokes, you see. They were what caused it, but what vexes me now is simply brain damage. Differentiating stroke from being shot in the head or getting your brain damage some other way serves only to make excuses for not recovering, and sod that.

So, I'm left without a snappy term, and default to "stroke sufferer" for the time being, until I  can think of a good way to encapsulate "ordinary guy recovering from brain damage."

Acupuncture and Stroke

Why I Pay To Have Over 50 Needles Shoved in Me Every Week

It works.

I go to the gym, go to the pool, and go to acupuncture, all things I have to pay for, and all things that involve varying degrees of discomfort, because they are all working, demonstrably, to hasten my recovery from brain damage.

To get why they are having a positive effect, I think it helps to understand what's going on with me. When I had the strokes, bits of my brain died. The bits that died mostly controlled motor function: the movement of muscles. In some cases, like the left side of  my face, although sensation remained, I lost all the brain matter that was sent signals to move the muscles. In other cases I lost sensation and control, like in part of my right butt; it felt like I was sitting on something in my back pocket, but in fact I was just sitting on my ass, and couldn't feel it (I can now, no need to kick me). In most cases, I lost some of the brain matter controlling some of the muscle, with the result of making almost every part of my right side below the neck weaker and less coordinated. The secondary problem, in some cases, is that of atrophy: it's been a long time since some muscles saw use. My right hand is visibly thinner than my left, and there are muscles in my face that can only be felt on the right side.

At this point, some seventeen months after the strokes, to recover, I have to get other parts of my brain to do the jobs that the dead bits used to do. This is a process that is similar to a baby learning to use its body, a process that takes many years, and is eventually optimized in adolescence, which is why teenagers can be great klutzes, but suddenly graceful by their late teens. I'm hoping it doesn't take me as long as a decade, but it might.

Using the brain's plasticity to get live bits to do the work of dead can only happen when there is stimulus in the brain in the live bits. That's why function now improves slowly, and improvement only happens in muscles whose controlling brain parts were adjacent to living brain tissue. Their signals were reaching still-living brain matter, but it has to learn not to ignore the signals as irrelevant, and take responsibility for new muscle.

Gym work both requires muscles to work, and the brain to control them, more often than not in the stabilisation; that's why I do mostly dumbbell work. In the pool, I'm requiring muscular control and coordination, and also parenthetically working on my endurance which is pretty low. The benefits are clearly noticeable: despite being tired after swimming, I walk better. So, what does acupuncture do?

Here's what an acupuncture session is like, if you've never had one. You take off varying amounts of clothing, sometimes  lie face up, sometimes face down, and the acupuncturist puts a bunch of needles in you. Then you rest for a while, often falling asleep. Finally the acupuncturist removes all the needles and you're done. Yes, some of the needles hurt some of the time, but usually for no more than a second or two. Also, I've had a lumbar puncture (a.k.a. spinal tap), and these are nothing in comparison.

Often, you're booked in for an hour's session, and the acupuncturist will come and wake you up so they can get the needles out and get you dressed before their next client. I've been going to a great place called Olo Acupuncture in New York, that practices community acupuncture: the treatment happens in a communal space with a bunch of table and chairs to lie in. Apart from the price, the best thing for me is that they let you rest (or snooze) for as long as the treatment takes. On a recent trip, when one of the needles was damn sore, I slept for over two hours, and it's not like I'm running a sleep deficit.

There's a lot about traditional Chinese medicine that is alien to my skeptical self, and as a result I find it useful to think of much of the approach as having a very good, but rather peculiar, working metaphor. Frankly, I don't care if a practitioner is balancing my chi, clearing wind from my trembling limb, or just poking me with needles: it works. I feel better afterwards, more even, more symmetrical.

What about the placebo effect? Perhaps it's just me thinking that acupuncture is going to work, and so it does. For many of the benefits I perceive that could be the case, and the mind is certainly significant in changing the brain, but not all. The left side of my face has gradually been moving thanks to acupuncture. I have no doubt about it. Before I had needles in my face and left orbit, my left side did not visibly move. It does now.

What I think is going on is that the needles are stimulating the atrophied muscles, or nerves into those muscles, and my brain is recognising that stimulation as requiring response. Perhaps it's as simple as the needle being fine enough to be an irritant without causing damage. Perhaps it's something else: acupuncture anesthesia seems to work on a different principle. No matter, I can't stimulate those muscles any other way; believe me, I've tried.

In the end, what matters to me, is that acupuncture is helping me to recover, and to recover faster from the brain damage caused by stroke. It works.

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

Boobs, Balls and Lumps

Last night, after acupuncture, I went to some friends' new place ostensibly to play board games, but more accurately to celebrate the successful removal of a cancerous lump from Bitsy's boob. She wrote about how she saved her own life with a good tit-grope in the shower, and continues to write amusing and engaging things about something that is scary.

Bitsy's medical fun-ride took just under three weeks; mine has taken just under sixteen months, but we found something we have in common that people don't really get: it never ends. There are questions that simply cannot be answered accurately, or even approximately. Humans do not like this truth. Western medicine hates to have to admit it, also. This is more evident, perhaps, with neurology, but it's just as true with oncology.

When will my brain learn to use my right side? No idea.
Are you going to need chemotherapy? Dunno. Ask later.
Will you have double vision for ever? SCIENCE says probably, but not certainly.
The lump is out and you caught it early, so you're all clear, right? SCIENCE says probably, but not certainly.

The lack of a finite endpoint could be disheartening, and I think it is to many, but I like being a rational person, I like to understand things, and I like logic. I will get better if (and only if) I work hard. I don't know when I'll get better, but it will happen. So I work hard. There's no point worrying about unknowns, when the known path is right there, and clear.

What's your next step? Take that. Don't worry about the chasm down the road, you can build that bridge if you have to, but unless you take the next step, you'll never find out if there's already a way across.

Starting Strength and Stroke

Lest you think I know what I'm talking about (or that anybody does when it comes to non-geriatric stroke recovery): This dude had a stroke with similar gross effects to mine, and has made similar gains using Starting Strength. In fact in some areas he's done better: his balance has improved more than mine. Probably because I am very bored by many of the balance exercises (which is why Tai Chi works well... not boring). Anyway, I was interested.

Can Do vs. Can't Do

I focus a lot on what I can do, and try to stretch that every day. Interacting with officialdom, like trying to fill out a Social Security application for disability insurance makes me pay attention to the ways I can't do stuff that is ordinary. It's a disheartening process to acknowledge that, sure, I can lift a 50lb dumbbell the couple of yards it takes to get it to a bench and back, but I couldn't carry it downstairs for love or money. Nor stand for six hours. Nor can I read long detailed text with ease. That last is the hardest admission to make at the moment.

I suspect there's a missed opportunity in the way the social security net is structured here. To be clear, I only pass the first hurdle because I paid a lot of tax when I was working. But the insurance incentivizes staying disabled, instead of rewarding recovery. This seems medically and economically dumb.

Whatever. The conflict between thinking optimistically about my capabilities and thinking realistically about my capacities is raw today.

9/11 Update

Monthly update time! It's 11 months since I had a stroke, and 11 years since I first wrote a piece called "Hello from a new New York" in the wake of the WTC destruction. The city is new again, but because my brain is damaged, not the city nor the psyche of the whole country.

I've written quite a lot about the progress I've been making in my effort to recover, and with the occasional exception, I hope I have been as positive as my recovery to date has merited. I return home to this city in a lot better shape than I left it, thanks in no small part to the friends and family who succoured me when I needed it most. But I realise that I have had a shorter-term goal over the last months: be well enough to return to New York.

That goal has been accomplished, but it has left a gap I didn't know had been filled until I felt the lack. I am not joking, nor lying when I say that I intend to walk on my hands again, but as a goal it is far more distant than I need, and although I can keep working towards it, it's not enough. Likewise get stronger, swim further, or walk better are too nebulous to be of much use. I'm working on all those things anyway, because I don't like the alternative.

I have an idea what the new goal should be, and it's almost orthogonal to recovery, but I suspect that if I fulfill that goal while doing all the other stuff I'm doing, then it will prove worthwhile. In the meantime, suggestions (facetious, fanciful or fantastic) on a postcard...

It's hard to judge my recovery compared to last month, since the context shift has been so huge. Not only, for example, have I had to deal with a new gym with weights in lb. not kg (arithmetic is hard!), but I have redesigned my workout to use more dumbbells,  which are more challenging to use anyway, go to Pilates three times a week with a much more fierce instructor, and make do with a murky, chemical-filled 22m pool. Who makes a 22m pool? People who hate, that's who.

Easier instead to look at some of the victories and challenges New York has had to offer in six days:
- I got around on the Subway, at first with a friend, but after the first day on my own. Victory! Some interchanges are hard (Canal St., 59th and Lex), and by and large people are even worse at offering me a seat than in London. I think I am not helped by the fact that I look in pretty good shape. Conversely the facial palsy helps here, as does the stick, but I find myself thinking "I'm not carrying this thing for fun, you know!" rather a lot. Perhaps I should get a t-shirt.
- I took my laundry in and collected it. Victory! The first non-food thing I purchased in NYC on my return was a laundry bag with shoulder straps, which I also used to pick up friends' CSA share. Both the veg and my laundry were bastard heavy. Much more so than a year ago. Manageable, but tough.
- I went shopping on my own to Pearl River, and got what I needed. Victory! I was so damned tired though, after Broadway and the Subway, and cooking myself dinner that I was in bed at 9:30pm, and asleep by 10pm. Not to mention the fact that I had had to resort to the Chinese emporium for white people because my vision was too poor to pick out a useful store when I had an hour to spend in Chinatown. That has a lot to do with the parlous state of my glasses (new ones arriving soon!) but the fact remains that my vision is pretty poor.
- I navigated a busy Brooklyn street in the dark and wet. Victory! I was with friends, and I nearly went over once, but caught myself before either face-planting or hitting anyone else. It was hard, and substantially harder after even one meagre glass of wine. I have become a very cheap date.

One of the things I have been wondering about has been prompted by the Paralympics, where there is a class for moderate impairment of the whole of one side. I have that. It remains to be seen whether I am sufficiently impaired to qualify for the actual Paralympics in RIo, and at 45 I shall likely be too old for any of the sports that interest me (i'll remain a spectator for the wheelchair rugby, thanks), but it has come as a surprise to me that I can work that hard. 

Qualification aside, what I have been wondering is essentially whether it gets any easier. When I walk, swim, or even sit upright I am consciously getting my right side to work. I am better at it, and am better at doing something else while spending some concentration on not falling over, but at a conscious level, I am working. This is visible in many ways, but two are most obvious: if I am distracted when walking, I look even more drunk than normal; when I'm eating, I tend to eat to the exclusion of all else: it is quite difficult to multitask when I'm cramming foodstuffs in my pie-hole. I don't yet know if any of the gains I have made so far will ever be automatic. I believe they will, but that it will take years, and I can't hide from the fact that I may be wrong.

This makes it occasionally galling to be in good shape. I have buffed up because I had to. If I hadn't, I would still be using a walking (Zimmer) frame, and labelled a falling risk. My legs look great because it takes a frankly ridiculous amount of effort to stand upright. Make no mistake: I am very happy to be in better shape than I have been for years, but to be in good shape and be disabled regardless challenges a lot of assumptions in the able-bodied, and I'm afraid that Americans, even New Yorkers, are pretty ignorant about disability, vide the almost complete lack of Paralymic coverage here..

So, New York is as challenging as I thought it would be. It's providing me with lots of opportunities to master my fears, both rational and irrational, as well as lots of opportunities to be humbled and grateful, both to strangers and to friends. Who could ask for anything more in life?

I'm sick at the moment with a chest bug. This is a pain, because it means I can do less, which hampers my recovery, and I feel crappy. It also illuminates for me something I have grown to suspect about stroke in general, or maybe just my stroke in particular.

A lot of people, from sufferers of stroke, to stroke doctors, nurses and physios have warned of the great tiredness that can come with stroke. Now, there's no doubt that in the first months of my recovery I tired very easily; anyone who came to Mt. Sinai and found me asleep in the middle of the day can attest to that. But I don't think that tiredness itself is symptomatic of the post-stroke experience.

Instead, I think that we sufferers of stroke are told that we'll get tired, we experience that overwhelming tiredness in the early days of recovery, and we then practice being tired. Our brains learn that being tired is an acceptable way to be, and it's pretty cool, because other people take care of stuff while we're snoozing. Being tired as a symptom of stroke is, in this case, pretty awesome, because most of the time "he had a stroke" is an adequate STFU to any question.

I'm left wondering, though, what's the biological cause of the tiredness? I mean, sure, when we're first recovering our brains take frequent times out to create new pathways, but six months later? Why would I be extra tired? The short answer is, "I'm not," but maybe that's peculiar to me, and there really is some reason why everyone else gets tired and sleeps more.

What I have found is that stroke is a sort of magnifier, but again that's not quite right. My response to emotional stimuli, for example, seems magnified, even in as trivial a case as really enjoying The Avengers movie. But that's more to do with the fact that my physical response is less muted, so my emotional response feels disproportionate for an adult. I'm actually pretty content with saying "adult with brain damage here" and enjoying a lot more bang for my exorbitant movie buck. Or at least, I shan't be working overly hard to recover from that particular change; I'm content adapting to it.

Ultimately, my experience is that I have little to no reserves. When I get tired, that's it, I'm done. This makes sense when you accept that I lost a few c.c.s of highly optimized motor control brain matter, and now the rest of my brain is having to pick up the slack. Unfamiliar parts of my brain are working to learn how to interpret signals and send meaningful responses to the bits of me that have been walking, seeing with binocular vision and being a face for forty odd years. My brain is still at it, it hasn't even finished just figuring that stuff out yet, let alone started to optimize it so that there's some left over capacity for me to draw on.

If this seems incomprehensible or far-fetched, let me put it to you that I now have a visceral understanding of why a child who's just become a toddler will rocket around, then keel over and fall asleep. Just the act of walking right as well as getting where I want to go can be exhausting. Or it was, it's getting easier with every passing day, because I'm working hard at the exercise I do.

Which brings me back to being sick, which is annoying because, although it's exactly the same as when you get sick, it seems to affect me more, because unlike you, I don't have anything to draw on in reserve. Of course you could just as easily have depleted your reserves burning the candle at both ends, but for me it means that I shan't get up tomorrow morning to go see the Queen toddle around Sherborne and I'll be asleep in about 20 minutes' time.

ASPIRE

I said I had a bunch of posts owing, and this is the first of them, about the ASPIRE program I was fortunate to take part in, at nearby Yeovil District Hospital.

ASPIRE stand for "Acute stroke Self-management support, secondary stroke Prevention, Information, Rehabilitation and Exercise" program. Too many letters, but trust me it looks better on the page, and you end up with ASPIRE. Which I thought was lame as all hell, but I was game to try anything to aid my recovery when I was assessed on Christmas Eve 2011.

As far as I know, it was the first and for a while the only such program in the country; I've not heard of anything like it in the US. It proved to be almost indescribably useful for me.

The program is simple enough to grasp: It runs for twelve weeks, and participants, who have all had strokes and are encouraged to attend with their primary carer if there is one, do an hour of exercise, choosing whether that's before or after the half-hour chat with a cup of tea and a biscuit.

The chats are directed, and cover the bases of providing information about stroke itself, as well as things like medication, nutrition, stress, exercise and relationships, and how they relate particularly to stroke. The conversation often drifted (particularly when I got involved).

The exercise was tailored to people's deficits, and always seemed included a combination of rehabilitation, simple cardio and strength. We were helped into machines if we needed it, encouraged and cheered on by the two stroke ward nurses who run the program, Debbie and Caroline, and a physiotherapist, Donna, as well as the volunteers, all of whom had had strokes in the past.

I never thought that I would be glad to get on a treadmill, but the feeling of being able to walk, even slowly, and even holding on desperately was magnificent. Being in the hospital gym gave me the confidence to start going to a regular gym again, and gave me measurable results for the work I was putting in (see below for details).

Both have proven very useful: I have been enjoying going to the gym and pool four times a week for a while now, and making measurable gains in fitness means I have something to point myself to when I feel like I'm making no progress. The pace of neurological change and recovery is sometimes so slow that the effort it requires seems almost not to be worth it. So I stagger, I think, is that so bad? Can I live with double vision, after all, I'm functioning? 

I refuse to accept neurological deficits, though, and making progress at the gym or pool, however small, gives me enough feedback to persist until my brain does a lot better job of recovery than just good enough.

At least as useful as the exercise, though, were the tea'n'biscuit (cookie!) chats. Less for their content, which was still excellent pragmatic advice of the sort you're more likely to get from a nurse or therapist than you are from a doctor. More for the fact of being in a room with a couple of dozen other people who had had strokes too.

I'm not much of one for support groups. I mean, sure, in theory, but for me? I would have said not, and I would have been wrong. I had underestimated how isolating my stay in the hospital and in-patient rehab facility had been. I think in the twelve weeks before ASPIRE I talked to maybe three people who had had strokes, and that just wasn't enough.

With ASPIRE we had people to share notes with, tips, gripes, and everything else. People who understood in a way that nobody who hasn't had a brain injury truly can what it is like to be recovering from neurological deficits. How it feels when you're worse at everything you put your hand to, if you can even do that. And more, the volunteers were two or three years past having had their strokes and were back doing some of the ordinary things that are still beyond me.

It's hard to say which aspect of the program benefited me the most; they worked together to set me on a solid path of recovery. I recognise that there's quite a way to go, but I'm far better equipped for the journey, now.

Penultimately, the posts I'm making about stroke recovery and so on are now public, whereas before you had to be a special flower just to see them. As soon as I figure out how to make the old ones public, even the Ultimate Urine Victory, I shall.

Addendum: boring progress part (weeks 1 -> 12)
Treadmill: 10mins @ 2kph, no incline -> 10mins @ 4.5kph, 5.0 incline.
Cycle: 10mins @ L2 flat, 58rpm, 5.88km -> 15mins @ L7 Hill, 80+rpm 8.07km
Rowing machine: 3.29m/500m for 500m R5 -> 2.09m/500m for 1500m, R7.
Trampette: 4'30" holding on for dear life -> 5m, no hands
Free weights: 3 x 10 x 1kg curls -> 10,8 x 8kg, super: hammer curls, raise, squat
Lat pull-down: 3 x 10 x 6.25kg -> 3 x 12 x 16.25kg
Weight: 91.4kg -> 85.7kg

I'm fitter and stronger now. Find me on Fitocracy.