Monday, April 30, 2012

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.

Friday, April 27, 2012

Sucker for Movies

I went to the cinema today (after a follow-up to one of the research studies I volunteered for), and saw the Avengers movie.

Now I've enjoyed the recent spate of comic book adaptations quite a bit, I liked Thor and Iron Man, I really didn't hate most of the Hulk attempts, and although I think they missed making the end of Captain America almost unbearably poignant, it was a jolly good movie.

Also, I'm not approaching this particular oeuvre with an eye to high art; I'm looking to suspend a bit of disbelief and relax while people smash things up and quip and get a bit angsty. I'm also not completely without critical faculties, though: Ryan Reynolds sold me on the GL movie with his panel oath at Comic-con (look it up on YouTube, he makes some kid's year), but the movie was still bad.

Cut back to me watching the Avengers today, armed with some Maltesers (one of the few things I miss by comparison with going up the block to a movie back home), and the effect of the stroke is quite profound. I'm suddenly a total sucker, in the best way possible.

I've mentioned before that some months ago I thought I had some emotional lability that meant I laughed uncontrollably at the most childish of things. Well it turns out that the effect is not lability at all, in my case, it's a lack of motor control to suppress the laughter. In other words, just as I did when I was six years old, I think unexpected farting is hilarious, and I always did, I just learned not to laugh out loud at it sometime before adulthood.

Some of that impulse to control my laughter has returned: There are things that I find amusing that it's really not OK for other people around me know that I find them giggle-worthy. But I am often caught off guard, and I suppose I generally laugh a bit more than before my stroke.

A movie like the Avengers film is engineered to provoke responses from us, especially if we read a bunch of comic books. I mean, it's a classic hero team story: The protagonists spend about 2/3 of the time fighting each other, then team up to kick ass for the last third. There are beats of pathos, beats of humour, moments where we're supposed to respond to Robert Downey Jr.'s glib responses, to Chris Hemsworth's studly godliness, to Mark Ruffalo's fist, and to Chris Evans' old-fashioned morality. 

Those emotional responses have a physical component that adults usually dampen, but I still don't do. The brain and mind respond to the body, and whether that's always the case, or as adults we associate more extreme physical response with more heightened emotion, it's hard to say, but the end result was that I really enjoyed the Avengers movie, to the point that I can't tell if I squealed out loud or not. (I'm pretty sure that I didn't, but maybe everyone was super-polite to the disabled guy.)

I'm all in favour of this return to the child-like pleasure of going to the movies. Even considering the exorbitant cost of Maltesers, I so got my money's worth from it. I'm not sure I would ever take movie recommendations from me ever again, but I would go with myself to see something stupid and explode-y.

Saturday, April 21, 2012

A Small Victory

Another small victory, completely unrelated to boring stroke recovery:

I went, after the gym while waiting for the infrequent Saturday bus, to a book fair being held lethargically in the Digby Memorial Church Hall (coincidentally where I've started practicing Tai Chi). There was a Blake's 7annual I considered picking up, but it was a bit steep at £7 (about $11-12), especially for little more than a joke gift (sorry Joe).

My eyes wandered over the selection of children's books, all at 50p apiece, and what should I see but the Earthsea trilogy in the same editions that I read to death thirty years ago, or more. All in perfect (by comparison) condition. Sure the covers are whitewashed and the artist didn't read the books, but the interiors of the paperbacks include the fabulous original woodcut chapter illustrations. I would have paid rather more than the £1.50 I did, but mostly out of sentimentality. A victory!

Friday, April 20, 2012

The Brain That Changes Itself

At +Ralph Mazza's suggestion I recently read The Brain That Changes Itself, which sings a paean to the wonders of modern neuroscience, and in particular neural plasticity, which would seem to offer, say, someone who had a stroke, cause for optimism.

To get the bad out of the way, I didn't like at all the chapters that were thin on science, or relied to much on the author's experience as a psychoanalyst. The conclusions may be accurate, but the chapter on Internet porn came across to me like the author banging a well-worn sensationalist drum of titillation and puritanical propriety. Also, I haven't waded through the annotations, which seem to take up half the eBook, since reading is a bit slower at the moment, and I couldn't be bothered at the time. I still have them to read at my leisure, though.

Other than that, I thought it was an excellent book whose implications matched my personal experience very well. For example, the first chapter described a woman who--due to a poorly prescribed antibiotic and an almost total loss of vestibular function--had had the sensation of falling for five years, even suffering the same sensation when she had already fallen over. Miserable. The chapter describes how she was successfully treated using principles of neural plasticity.

Using the ideas in the first chapter (but lacking expensive equipment) I derived a way to experiment upon myself, potentially improving my own poor balance; it could do little harm. It worked. My balance improved noticeably. Score one for the principles the author was describing.

As I read more, it became clearer that everything I knew about neurology from high school (my A-level Biology 20-odd years ago) was wrong, or at best an inaccurate approximation. The implication for me is evident: recovery is not only possible, but attainable; it takes time and hard work, it will often be boring. My relative youth and the quite small amount of lost brain matter are an advantage. I suspect that never learning to drive will also help.

Yesterday, I was asked to speak as the "expert patient" or graduate of the ASPIRE program I mentioned in an earlier post and I found that I was unable to be as coddling as some medics seem to be. Sure it's horrible having a stroke, and sure it's tough, and for sure sometimes there's so much damage that recovery is going to take decades at best, if it's possible at all, but given all that we have a conscious choice to make, and we should be damn sure we make that choice consciously: Do I want to sit in an armchair and fester for the rest of my life, or do I want to get better? If the answer is "get better" then we do the hard work. 

The book lays out some of the principles and, I think, gives a pretty coherent and sensible view of how our neural matter really works, why localization made sense at the time, and most importantly for me, some ideas about how best to use those principles to effect a faster recovery. As an example, I now go to the gym quite a bit, and I was already concentrating on form over apparent brute strength, but understanding more about plasticity has meant that I pay more attention to my right leg while cycling, for example.

Another example that cuts to the heart of the recovery vs rehab dilemma, is that it matters when my left hand compensates for my right hand. Early on, I was compensating enormously and didn't know it, which partly accounts for my wildly over-optimistic expectations of how long it would take to recover. Now, I work hard to notice when my left hand has quietly assumed an automatic task that my right hand should be doing, and force myself to use my right. Even though it's often much slower. When I pay attention to forcing my right hand to do the things it used to, it improves. Any other improvement is as good as accidental.

If you've read the book and have thoughts or questions or whatever about chapters in it, let's talk about it! (Except the internet one. Can't be bothered. Not relevant to me.)

(Originally posted on Google+ with some commentary.)

Thursday, April 19, 2012

Becoming Superhuman

There's no question that I lost some brain matter: that's what having a stroke and having brain damage entails. But as I work to get fitter and stronger and to recover (which is going at least as well as expected because I work hard) I have also been reading about neural plasticity and learning a bit how the brain works.

To that end, I decided that, if I'm going to get fit (and I am), then there's really no reason not to get flexible at the same time. I mean, fifteen years ago, I could walk on my hands, and I was fairly gymnastic. Since I do physio exercises 6 days out of 7, I add to that a bit of work stretching the muscles themselves, and re-educating my stretch reflexes.

Recovery is a slow process; at six months muscles in my leg that were paralysed quite suddenly started to work again. Since I'm in it for the long haul, I shall remake myself into a flexible person. I've got time.

I even went out and got a copy of the 4th ed. of Stretching Scientifically, not because I expect to be able to (or want to) do the splits, which I think are pretty gruesome on a guy, but because I want to learn about the brain-muscle interactions as much as I want to learn about good form for the exercises I do.

On which, more anon...

Wednesday, April 11, 2012

Six Months

Hard to believe, but it's six months today since I began* the morning withBret, I would you mind calling an ambulance, I think I'm having a stroke. To his credit and, I think everyone's relief, he called the ambulance first before exchanging his bath towel for clothes. It's a strange thing to be that indebted to someone, but not a bad thing.

Since then, it's been a series of shocks and surprises, occasional dark clouds of depression, frequent silver linings, great warmth from friends, family and many acquaintances, but largely cold indifference from strangers and the universe at large. The uphill path of recovery, a slow road of repetitive result-less futility is punctuated with shining moments of success, and with each little victory I drag myself a little closer to rehabilitation.

It has made, and continues to make, a difference knowing that I have supporters on the way. From the friends who came by my hospital room at Mt. Sinai, or trekked out to the Median Road rehab unit, conveniently located in what cabbies called "Murder Row," to family who have moved mountains to see that I got treatment and rehab, even to those acquaintances or strangers who are just interested in reading about a stroke from my perspective. Just knowing you are all out there, even if you're bored by what I'm writing and too polite (or guilty) to get my drivel out of your stream, goes part of the way to getting me moving each day.

Ultimately, though, my recovery is my job; nobody else can make it happen but me. No known treatment will get my brain to handle the jobs once done by the few cc of neural matter I obliterated when I had my strokes: I have to make my brain do that. No doctor can give me a pill to make it all better, or cut the wrongness away: I have to make it better, and either accept the wrong, or work to make it right. No physiotherapist can improve my walking, or get my shoulder muscles to work: I have to do those exercises, I have to pay attention, and I have to repeat them it seems endlessly.

Poor me.

Well, bollocks to that. "Poor" nothing. That's life, and that's living for you.

I'm learning about my body, my brain, my mind all the time, and I'm growing. Until recently I had no real idea what it is like to have disabilities, and now I do, I don't like it, I'm working hard to get rid of my deficits, but some of them may be permanent, and I can never look at the able-bodied world in the same way again (you wouldn't believe some of the websites out there).

All of which is to say, I'm not done, yet. Before I had my strokes, I had noted from the movie Milk that Harvey Milk was forty before he moved to San Francisco. Everything he did to change the world didn't start until he was forty. I was optimistic that there was plenty of life still to left to live when I turned forty, and when I then had a bevy of strokes less than five months later, I made the choice to remain optimistic. I mean, what's the worst that could happen? Short of death, it already happened, and if I die, it's someone else's problem.

Six months on, I don't consciously remember what it was like to walk, read, write or type before I had the strokes, but the sense that my right side is not right is still strong, and I know that persistent use will bring function back. It's hard to not do things with my left hand, to stop myself compensating, to force my brain to rewire the right hand as it once was, but unless I do that, it will never recover. It's frustrating to tie my shoelaces slower, but it's worth it to me to take longer and make my right hand do what it used to, so that eventually it will be fast again.

Some good news: since Monday, I've had a sensation in my right leg akin to having rubbed Bengay (Deep Heat) into my calf and glute. This has come with an increase in control of the 10 degrees of motion as I extend my leg and lock my knee, if I concentrate and isolate it on a leg press. It has meant I'm a little bit more stable, and a little bit more able. This at the exact moment where many will tell a stroke sufferer that effective rehab is done, or that further gains are unlikely. Screw that. 

If I wasn't wired for determination before this experience, I sure as hell will be when I'm done.

*OK, I'd been up for a couple of hours in a writing hangout with someone else, but that feels like before not the beginning.

Tuesday, April 10, 2012


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.

Tuesday, April 3, 2012


I have much I've been meaning to write about, but the days have been simply packed. In no particular order the stuff I'm mulling:
  • The ASPIRE post-stroke program that I concluded a few weeks back.
  • More on exercise in general and stretching in particular.
  • Thoughts on neuroplasticity and the book that +Ralph Mazza recommended a while back.
  • Further thoughts on neuroplasticity and stroke recovery, or more general brain injury recovery.
  • Yet more on neuroplasticity and stretching and "Stretching Scientifically" by Thomas Kurz (a.k.a. How The Eastern Bloc Won So Many Medals For So Long).
  • My grandmother's funeral last Friday, attending it, and crashing hard on Saturday.
  • A better visit with eye doctors this morning.
When, how, and whether I write about any of this stuff may get subsumed again in the day-to-day of recovery, though. Shit happens.