Bloody Resolutions

For the first time, I've maintained a New Year's resolution for the whole year. I don't recall ever doing that before, certainly not for a resolution that was specific, rather than the "I will be a kinder person this year" type of vague promise that any lawyer could drive a truck through. No, for 2017 I resolved not to fall over, and I did it.

I've sat down quite heavily, but always on a chair and one I intended to occupy, if not so precipitously. My arm flies out often to help me keep my balance and I'm no stranger to the windmill flail of a gymnast trying to stick a landing, just with much less grace. Turning has meant some fancy footwork (from my left) when my right foot has decided to land in a very unhelpful spot, but for a whole year (and since then) I have not fallen.

This may not seem like a big deal, and for most, it isn't. Not falling is like breathing: something that we shouldn't have to think about in most circumstances; it's automatic. Over the last few years, however, gravity has taught me that I do need to concentrate, and for me, not falling will never again be automatic. Instead, the preparation and calculation when I stand up, turn or just walk must always happen, and that is on it's way to becoming automatic. It's faster now, but there will always be a delay when I get moving; I always have to think about it consciously.

"I am in blood stepped in so far that, should I wade no more, returning were as tedious as go oe'r." (Macbeth)

Making that mental preparation, rather than assuming that I can turn around without ending up on the ground, is boring. If moving can't be automatic again then the siren call of the sedentary response is even more alluring: if moving is a hassle, don't move. This has it's consequences, though. Brains develop by having to work, even with physical things (we just, mostly, get the boring repetitive stuff out of the way when we're little kids), so choosing not to move inherently limits healing. Also, doing nothing makes me fat and unhealthy. The very condition caused by having a stroke makes behaviours tempting that in turn increase the likelihood I'll have another. It's a trap!

A year ago, I had no expectation that I'd make it the whole year, just intentions. At some point, I'd gone so long without falling that merely having to start again would have been painful, as well as the physical discomfort of having fallen. By the last few days of the year, I was determined not to waste my efforts, although such 'waste' makes no objective sense. Now, a new year has begun, and I'm just as determined to maintain my resolve and not fall.

However, I've already made it a year, demonstrating to myself both that I am able to not fall for a whole year, and that I have the stubbornness to sustain a resolution. It would be foolish not to use the latter for further gain, especially to counteract pitfalls; resolving to eat a packet of biscuits (cookies) every week would easy, bad and delicious.

Last year was tough for me; I was depressed and news (local and international) has been appalling. I've found it hard to see anything ahead but doom and consequently had little motivation beyond the hedonistic. As a result, I find myself at the start of 2018 fat and unfit which is a downwards spiral, since exercise increases serotonin levels and makes one happier, as well as fitter and less likely to die.

So, for 2018, I've added to my resolution. I'm still adamant that I won't fall over, but in addition I've resolved to go to the gym at least three times a week and do some exercise. If I don't go three times and could have then my falling resolution is failed: I'm leveraging the tedium already spent to require further tedium. I am in blood so far stepped in... It helps to know that in a few months, going to the gym won't be a chore any more, but one of the ways I've failed before is when my routine has been disrupted; it's been trivial to routinely not go to the gym after a valid event to prevent me going. The resolution addendum, therefore, is not absolute: I know, for example, that I won't be able to go to the gym at the end of February because I'll be on a boat in Norway, but the addendum will require me to go back to the gym when I return.

This time next year we'll find out if my resolve is stronger than my indolence.

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.

I don't hate the snow, really.

Snowfall is a sign that my world is about to close in. I can do about a block radius, if I'm lucky. I live on a good block, so I can get to the gym or Starbucks, the pool, and the American Museum of the Moving Image, or the cineplex, usually within a day of the snow's arrival.

The subway is harder to get to at two blocks, especially since those bastards at the Salvation Army have never, ever cleared the snow. Once I'm on the subway, I'm probably going to be fine if I'm headed to Manhattan.

Walking any distance is difficult, tedious, tiring and frustrating. I'm in the coffee shop right now because it would take so long to go the one block home that my coffee would get cold. I'm not sure I could keep my balance while holding a cup either.

There's little point in asking anyone what the snow is like, either. They don't see the same things that I have learned to. Light snowfall is trivial to most, but hobbles me even more than I already have been.

I don't hate the snow, I still think it can be lovely, still love the idea of it. I despise, instead, what it does to me. 'Tis the season to be stuck at home, making rare forays into the world, remembering winters past. How jolly.

Spin The Cripple

My balance is still terrible. It takes conscious thought and some effort to just stand still, which of course I can't do. So it should be no surprise that the problem of relearning equilibrium has vexed me; I am heartily sick of being unstable.

As children we are wired to learn things that are so automatic that we don't even notice them as adults. Things like being able to slot blocks into holes, looking up when we walk, and being able to stand. Unfortunately adults are not wired to find learning such simple things interesting or fun. Such is life.

One activity that children seem to delight in at a certain age, and then no longer, is spinning around until dizziness overwhelms them. They often then fall over, regain their balance, and do it all again.

I wonder if that isn't training the brain to process the signals from the inner ear, and thus developing balance. Perhaps the key to fixing my balance is spinning like a dervish until I fall over. Of course, children have a much lower center of gravity, so this is just another reason to get access to a rubber room.

Balance

Balance has been on my mind a lot recently.

On an immediate and obvious level, my balance is very poor these days. Walking now is quite like walking while drunk off my ass; I stagger and weave and bump into things, especially if I'm not concentrating or I'm doing something extraordinary like talking. As an added bonus, I bruise easily, too (thanks, Aspirin!), so my upper arms are particularly beautiful. 

I can't tell why my balance is so poor (apart from the blindingly obvious because you have brain damage resulting from a stroke, dumbass). I maintain that my sense of balance is still good, that I know when I'm going over, but that it is muscular weakness on my right side and my brain still expecting dead bits to control my right side that fails to prevent the fall from happening. This is an optimistic view: it suggests that as I strengthen my right side and keep doing coordinated movement with it, my brain will gradually learn to use not-dead bits to control muscles that keep me upright, and maintaining balance will become less of a conscious activity.

This view might be wrong, and the neuroscience facts I learned 20-30 years ago would say that it is wrong. It's possible that I will always require conscious mental intervention to stay physically upright. Video game controls tend to give the lie to that thesis, though, if you've ever played a game obsessively enough.

Somewhere between the two is the possibility that it will take too long for an adult brain to sustain the level of intent attention that making balance automatic requires. In this view, I will reach a point where my walking is good enough for my brain to be satisfied, and it won't improve further. The trick to avoiding this seems to be to keep my mind dissatisfied and hope that it influences the brain to continue adapting. Same deal with my eyes: if ever I get too used to the double vision, the neurologists end up being right, and my vision stops improving.

All of which plays into another issue of balance: how much time do I spend on recover versus how much time do I spend just accomplishing the task at hand. I can stagger quickly, or walk more correctly slowly. This affects almost everything: when I use my right hand (for example typing this), am I doing so correctly or quickly? Correct doesn't become quick without time and effort, especially at 41. 

The intention tremor in my right arm and hand makes this choice even more pronounced: clearly, it's worth taking time to lift a glass or write with a fountain pen, concentrating on not having the tremor. Sometimes, though I'm just thirsty, or I just need to get a phone number down quickly and don't have a computer right there. That's when I have to compensate for the tremor, and hope that I'm not reinforcing it.

Furthermore, I think about work-life balance quite a lot. I am lucky to have the opportunity to focus on recovery, but soon I'll be looking for work (or student loans and work), and I wonder how I will ever have time to keep up the exercise I'm doing and sustain a paying job. Long before I had the stroke, I thought that American (and British) working practices were insane, and I think so even more now. Whatever work I do in the future must allow me enough time to return to full function.

Finally, I wonder about the balance to be struck between being disabled, and looking disabled. The facial palsy is a strange help here, as is the occlusion in one lens: I look as if I am disabled in the head somehow. That seems to be picked up on more than my walking stick, where although I look increasingly muscular and buff (huzzah!) I am actually more impaired by the physical than visual (probably; it's hard to quantify). The net result is that sometimes I do need help, but not necessarily where and when an observer might think. I'm new to the term and concept of invisible disability, and honestly never thought I'd be looking at it from this side. But then I never thought I was going to be disabled at all, more fool me!

Neurologist Visit

Yesterday, I took a trip up to London to see a consultant neurologist with a specialty in dealing with vision. I'm due to go up to the regular got-referred-in-early-December eye clinic in two weeks' time, but when I got the appointment for that clinic, nearly a month ago, I was desperate to see someone about my sight, and so I shelled out to see this guy privately. He's one of the pre-eminent neuro guys around, all the people at the eye clinic will know him, his name was given to me back when I was in hospital in the US, so he's definitely the right guy to go see.

Except I don't believe him, and I think he's wrong, and while I don't for a second feel like I wasted the money (on the order of $500, thank you disability allowance), I got more out of seeing old friends and teachers from drama school in the afternoon.

He was professional, thorough and on the ball, and thought that I'd probably seen all the improvement in my double vision that I was going to. The one and a half syndrome might improve. The oscillopsia (vertically wobbling eyes) could maybe be treated with a drug... that would have a deleterious effect on my stability, making it challenging at best. My balance issues are likely unrelated to my vision, but daily balance exercise for ever will help. So:

• Diplopia - tough shit, carry on.
• One and a half syndrome - tough shit, carry on.
• Oscillopsia - there's a drug, it sucks, probably tough shit, carry on.
• Balance - tough shit, carry on with your walking stick.

Also, since the one and a half syndrome is so rare these days would I mind coming up for a half day with some students... they'd reimburse travel. Of course.

Now, I'm in no rush to dismiss the expert opinion of an eminent neurologist (I'm still going to, it's coming), and I'm genuinely happy to have someone pay for me to go up to London and amuse medical students for SCIENCE, and I may just be in deep denial about the whole thing, but I respectfully decline to take his word for it, for two major reasons:

First, he quoted to me the neurological canard about there being negligible progress after about six months. Since I have seen walk into my hospital room (with a stick, and with difficulty, but walk) someone who could move only the toes of one side at six months, I consider this, on its face, false.

Second, I continue to see change and progress in my vision. Slow, for sure, and inconstant, but I am certain that the double vision is gradually improving, as I mentioned a week or so ago. My left eye can look slightly to the left of the midline which says either my left LR is weak but working, or the diagonal muscles are working hard to try and compensate.

Underlying my dissent from neurological orthodoxy is a question that remains unresolved for me, mostly because I'm not asking it hard enough, or of the right people, or because we just don't know. It is this: how are the nerves and muscles of my eye different to all the other damaged nerves?This is crucial. My eyeballs themselves are fine, it's the nerves connecting to and controlling the extra-ocular muscles that are damaged (or dead) and must be worked around. Going to the gym, as well as making me fitter and stronger, has improved the musculature, control and nerves of my right side.Why should it be somehow less effective to work the the muscles of the eye? Show me the science.

More nebulously, and rather irritatingly foo-foo-ey, I am arriving at another conclusion about our neurology and the brain's rather amazing ability to recover function: believing we can or should heal some part of the brain, or re-learn some useful skill makes it possible to recover that function or skill. I can't be doing with some of the deficits I have, and I'm determined to eliminate them, and I think that that choice, that mental direction, influences the actual neurology of recovery. Again, I want evidence beyond the anecdotal, and my personal, and again I have arrived at a question I would love answered:

Is there a significant difference between the expected and actual outcomes predicted and observed by neurologists when treating stroke patients as compared with treating victims of external brain injuries. Do we have higher expectations of, say, Gabrielle Giffords, who was shot in the head, than we do of a stroke sufferer, and does it make a difference?

March Update

It's five months to the day since I had my first strokes, including the big old brain stem bleed, so it's time for a round-up.

I'm down to 85kg / 187.5lb. and 32" waits pants (trousers!), I go to the gym and swim five times a week, on top of doing 45-60 minutes of physio and other exercise first thing in the morning. The effects are clearly showing (I peaked somewhere north of 230lb.), but the paunch and muffin-top will be the last to go. I'm in no rush, since I'm able to do a little bit more of somethingpretty much ever day. So, in general terms I'm fitter and healthier than I've been for a while, especially since my blood pressure is medicated under control, futzing with Windows not withstanding.

My walking has improved. I can get around more confidently without my stick, but still need it, especially when tired. I still lean to the right involuntarily, and have yet to get whatever musculature is lacking there to get a grip. It's quite likely to be a neurological problem, which just means it will take effort and time. Although I have plenty of both, it is frustrating in the extreme to be toppling to the right and both not know why and not be able to fix it. I concentrate as much as possible on what I can affect, which is mostly my general health and fitness. Fitocracy has been a boon there.

I believe the diplopia is resolving, but it's taking so long it remains hard to tell for sure. It's easy to doubt what I think I'm seeing. 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.

In real terms my ability to stay upright has improved, thanks to persistence with exercise, but I still don't think my actual balance has changed in months. I still fall over if I lose concentration or turn around too quickly, or just stand up forgetting that I had a stroke. Most recently, and rather embarrassingly, I fell in the hospital gym, scratching my elbow on a mirror. It was stupid, and really only partly my fault, and my pride (what little is left of it) was the most injured part of me, but it served to keep any hint of hubris at bay. I've retained much of my dexterity, though lacking the equilibrium to back it up sucks.

Since proprioception is such a large part of my working balance, low light doesn't actually make me less steady, although of course some other part of my brain thinks it should. I've recently got myself a pair of "VIVO Barefoot" shoes (I think sold as Vibrams in the US), which are designed for runners to have the proprioception of being barefoot, with thin, puncture-proof soles. I love them so much that I can't imagine wearing any other kind of shoe. It amazes me that there's no research study into using barefoot-style shoes for post-stroke (and other brain injury) balance. 

Since I'm in the mood, some fun statistics about haemorrhagic and other strokes:

• Survival rate for haemorrhagic stroke is 26.7% within a period of five years. [1997-2003 study] (Well, that sucks.)
• Survival rate for haemorrhagic stroke is 60.5% within a period of five years if you're 41-50 years old, though. [Same study.] (That sucks less.)
• 10 percent of stroke sufferers recover almost completely. (I'm aiming for this end of the bell curve)
• 10 percent of stroke sufferers require care in a nursing home or other long-term care facility. (Yeah, no thanks.)
• 15 percent die shortly after the stroke. (Dodged that one.)

• 14 percent of people who have a stroke or TIA will have another within a year. (I'll pass, thanks.)
• About 25 percent of stroke sufferers will have another within five years. (No, really, I'll pass.)
• People with uncontrolled high blood pressure are seven times more likely to have a stroke than people with controlled high blood pressure. (Ah. Good to know. Bit late.)
• Statin use before a haemorrhagic stroke improves short- and long-term survival rate. (Well, I'm taking some now.)
Statistics are, of course, for suckers. The best any of us can do is look at our major risk factors and eliminate them. My naturally high (and at the time unnaturally elevated) blood pressure is under control. I don't smoke, drink very little, and don't have diabetes mellitus. My weight is heading in the right direction (and you had better believe it's going to stay there), and I am going to stay fit. Beyond that, worrying about having another stroke is only going to make me more likely to have one... so why worry?
I still think 'victim' is preposterous, since no malicious agent victimized me, 'survivor' is entirely redundant, since I'm evidently not a corpse, so I've settled on 'sufferer.' Although any pain is related to exercise, typically, and hardly unpleasant, the experience has not been without anguish.

A Minor Mystery and a Small Success

It was slightly puzzling me why I tended to turn left. At the moment, the left lens of my glasses is obscured so I avoid the worst of my double vision. I would have thought I would instinctively turn the other way, rather than into what is, effectively a huge blind spot, but I observed the opposite. (Yes, incidentally, I can now turn around without immediately falling over!)

It transpires, quoth my physio, that the left eye and left inner ear are more associated with equilibrium as one turns right. Since that's the side that has damage (above the neck, at least), turning right is slightly harder and so I automatically turn left. Something more to work on, of course, but mystery solved.

The small success I have enjoyed today was getting into a swimming pool. I've been gradually increasing the amount of times I can go to a (first hospital, then regular) gym, but hadn't yet ventured into the pool. The problem was my balance: Apparently it would not have been surprising if I did a roll onto my side or back and then had enormous trouble with the relative buoyancy of my left and right side. Since I was really quite a good swimmer, I found the prospect of having it taken away from me quite frightening.

Fortunately, although I could clearly tell my equilibrium was off, I was able to swim several lengths learning interesting things. Not only are my right arm and leg obviously weaker, so maintaining good form and swimming in a straight line are hard, but my right hand struggles to make and hold a slightly cupped shape. As a result, I generate less lift (we're talking breast stroke), so it's harder work to breathe smoothly. All of which says that swimming is good exercise for parts that are not otherwise being worked.