I Have No Idea Who You Are

My eyesight has not improved perceptibly; the current strategy of bringing both fields of view into closer vertical alignment is better than nothing, but not as good as obscuring one eye, and a lot bigger pain in the neck. I'm going to change, but not until I'm back in the UK for good… I have too much to do before then.

One of the ways in which my vision sucks is the effective lag I have in forming a picture and passing it on for recognition. My eyeballs are fine. The muscles controlling my eyeballs are not. So the visual data I send to my brain is in constant motion. It's a lot like having a shaky cam on each eye and trying to make sense out of the picture when they're combined with built-in displacement and shaking inconsistently.

I can do it; I form an image. It's slow though: it takes me seconds, not milliseconds. In practice, that means I have no idea who I'm passing on the street until they are past me, unless there is some other input. To give you an idea how bad it can be, I didn't recognize my own father on the street until he spoke.

It's easier when people speak: there's nothing wrong with my hearing, nor with the recognition itself, just the basis for recognition. Context can make it easier, too: if I'm expecting to see a certain person in a given place, then I can more quickly fill in the visual gaps to confirm that I'm actually seeing that person not someone roughly similar.

Happily for everyone else, there is no need to cross the street to avoid me: I won't recognize you. Sadly, the pleasure of running into someone and chatting is lost to me: I can't see who you are, let alone pick up the subtle cues that tell me if you want to chat.

On balance, I think this has made me more gregarious. I'll talk to pretty much anyone, but it's probably because I have no idea who they are.

Sore Eyes For Sight

I wrote a while ago with an illustrated guide to how the world looks to me. That has changed recently. Two and a half years after having the strokes, I'm not occluding my left eye. The change is more dramatic for observers than for me: it looks a lot better, but it doesn't by any means 'fix' my sight. 

One of the lingering effects of my brain damage has been diplopia, double vision. My problem is not in the visual cortex (where knocks to the noggin can cause double vision), but in the muscles around my left eye. My brain might want to have my eyes line up correctly, but the neurons that controlled eye movement are gone.

Worse, as other neurons take over the tasks of activation, the muscles themselves have atrophied. My left eyelids have not worked for over two years, and I can feel the difference: they are thinner. So, even as my brain recovers heretofore lost function, my body wants to make life difficult.
To make matters more fun, my double vision is diagonal; there is both horizontal and vertical displacement of the images from each eye. (This might make more sense when you know that three pairs of muscles control the movement of each eyeball, not two nor four.) Add in the oscillopsia in each eye, with independent period, and it's a laugh riot.
What has changed is that my eyes are now stable enough that it is now worth correcting the vertical displacement instead of occluding the left eye. I have double vision, still (and, honestly, that sucks harder than I can describe), but it is more-or-less level. It turns out that vertical displacement is a lot harder to manage than horizontal, a fact I would have been interested to learn two years ago.
Experiments have shown that most people cannot tolerate a vertical displacement of 1 but it takes a horizontal displacement of 12* to have the same effect. This helps me understand why the diagonal diplopia was so debilitating; the Fresnel lens I'm wearing corrects for 3 or 4. I don't remember which. The correction is not 1, it's taken over two years to get this far, and the prism lens will not change for another year at best, so whether it's 3 or 4 doesn't really matter.

The downside, since there has to be one, is that the muscles around my left eye are often working harder. That's a good thing! The headaches that ensue, however, are not.
My double vision is better, despite what the expert said, because I have worked on it every day. That is boring, difficult, and imperceptible day by day, but it is necessary. My vision is still objectively terrible, but it is improving.
* No, I don't know what units are being used, but the difference is an order of magnitude. 

Moving Pictures

Recently I've seen Hunger Games 2, Thor 2, Hobbit 2, Filth and last night, The Night of the Hunter. I'm lucky to live very close to the American Museum of the Moving Image, and a 10-screen cinema. The museum's website is shit for mobile and accessibility by the way, but the movies are good.

One of the features of my brain damage is that some level of critical faculty, or some intellectual processing is absent. So, I respond to things rapidly and honestly. This often means that I am easily manipulated by movies, but has another side effect: I can't rationalize a movie I'm finding dull with intellect.

As a case in point I was very engaged by Catching Fire, Thor and Filth least, perhaps the Thor movie, but Chris Hemsworth is yummy. I was so engaged by The Night of the Hunter, which has child actors who could be replaced by wooden blocks with little loss, that I am still thinking about it and its imagery today.

I thought the Hobbit was a bit dull. For all its flair, stellar effects and so on, I was bored. More Smaug, less New Zealand, and get a sodding move on.

Of them all, if you're looking for a good movie to take tweens and up to, then I would recommend The Hunger Games: Catching Fire. While you're there ask yourself who you are most like in real life. Snow's granddaughter? Effie? Senna? Be honest. I dare you.

The effect of the damage is interesting; it makes me a pretty cheap date: if a movie's well enough made, I will enjoy it regardless. It does have something of an emperor's new clothes effect though. You can't hide boring behind glitz. 

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. 

Teardrops Keep Falling

A single tear rolls down my still-slack cheek, and falls from my poorly shaven jaw. I wipe away the telltale track swiftly; it wouldn't do to be seen to weep in public.

Am I mourning the loss of mobility, of vision, of ability? Do I constantly cry inside at my infirmity, these single tears the only expression of a strangled emotion kept buried? Perhaps I lament the boy I was, the man I have been, and the shadow of humanity I have become, is that what these tears represent?

No. Both my eyes tear normally, but my left eyelids don't close fully yet, and so the natural lubricant of the eye—tears—accumulates on the left and sometimes rolls down my cheek. I make sure my left eye is moist enough, but other than that, these drops are a minor inconvenience at worst. That is all.

I may have regrets, but I am far from unhappy. Sure, there's a lot of hard work ahead, compounded, no doubt, by hideous bureaucracy, but life is working hard, and anyone who tells you otherwise is deluded or lying. 

How the world looks to me.

Normal vision

Since pictures substitute for words in many cases, I thought I would try to illustrate how I'm seeing at the moment. I'll build up separate images with each effect of the brain damage, so you can get an idea of how things look to me. I'll stick to the images that my eyes are sending back to my brain, which perceives the world slightly better, but works poorly with text.

First, here's the image I'm going to work from. Bear in mind that most of you would see this in 3D, but I don't. It's the cabinet in my living room that's full of games and game books. Notice that it's not hard to read Hoity Toity or Goa, and many of you will recognise Settlers of Catan.

Myopic version

I have been myopic (short-sighted) for over 30 years, so without glasses, the view would be blurred. I am very myopic so things are very fuzzy. Not so bad that my glasses look like the bottoms of milk bottles, but headed in that direction, for sure.

Of course I wear glasses, and used to wear contact lenses, so the world is not so blurry until bedtime, but since the strokes, I have had double vision (diplopia) which confuses things. I have diagonal diplopia, which is oddly more confusing than just horizontal or vertical displacement. Because my diplopia is rooted in the coordination and function of my oculomotor muscles, the muscles that move my eyeball, rather than in the visual cortex, the displacement is not fixed, it swims around.

Diplopia version

I also have 1.5 syndrome, which for our purposes here means that the displacement differs depending on where an object is in my field of vision. The syndrome has affected my left laterus rectus primarily, but some of the other muscles too, so the doubled image is both translated diagonally, and slightly rotated. The image to the right is a reasonable approximation to what I would see wearing glasses, almost. Read on for more wrinkles! It's not quite accurate because my image manipulation skills are not mad enough to convey the contention of the two images. You can clearly see the Goa there, but the picture doesn't give a sense of the other Goa wanting to be read first and foremost.

To manage the diplopia by reducing my visual signal to a single useful image, I have an occluding filter on the left lens of my glasses. Or, in English, I have a disc of translucent plastic that sticks to the inside of my left lens and makes it all blurry. Peripherally, my left eye has the benefit of my glasses without the filter, which should be of some use looking down, but because of the 1.5 syndrome, is not much cop on the left side. Dashing as a patch might make me, keeping my left eye essentially uncovered like this keeps it moving in (broken) concert with my right eye, and can only help with recovery. The effect of the filter is that I see something like the image below.

Occluded version

The irony of making one side of my vision so useless that my brain ignores its input is not lost on me. It's not always effective, either; sometimes, especially when I am tired, my brain seems more interested in the garbage coming from my left eye than the more useful stuff from my right.

The final, and frankly most debilitating visual deficit I have is oscillopsia; my right eyeball moves up and down a little, rapidly and regularly. As the size of the movement is usually at least a line of regular text at my comfortable reading distance, this makes reading difficult. It's also better or worse variably, but it's never better than below in terms of distance moved. The jitter is also quite a bit faster in my eye than in the animation.

Of course, it's not the eyes that do the seeing, it's the brain. What I've tried to illustrate is what  my eyes are sending on to the brain. What I actually perceive has changed over the last seventeen months, so I'm better at seeing a steady field of view, especially for rooms that are familiar. It's worth noting that I'm discarding the information from one eye completely, so I don't have binocular vision. I can't tell how far away things are, how fast they are moving, or how flat they are. Sidewalks are exciting! One of the notable effects is that the brain evidently retains a working model of the world, and uses that when there's no depth or distance information available: I can reach for a glass that I put down recently, but if you move it, I will miss.

Oscillopsia version

I seem to have learnt that the world is not constantly shaking, so the oscillopsia is usually (but not always) ignored in familiar spaces, but it is in full effect when I try to read. One trick I have used to read signage or subway advertising and the like is not to try to read a line of text from, say, a poster, but to allow the image of the text to be assembled coherently in my brain, and to read it from there. This trick is fiddly to execute!

One other thing I have learned from my ocular odyssey is that I infer a lot of the actual text in many novels; the word choices are so often obvious that I don't actually read them, but assume the word given the context. This is less easy with non-fiction, and I find any reading tiring regardless.

EDIT: Over on Google+ a friend was asking how I could even prepare these images given the way my eyesight is at the moment. I've had longer for my brain to get used to the way my eyes behave, I know what my eyes do, and I'm pretty familiar with my computer. The image manipulation is fairly simple. It still took more than a day, mostly because I was tired. Looking at unfamiliar things is most like the last image. 

Later, I likened it to looking at things from a very rattly moving vehicle. Distance stuff is easier and more solid, because the brain is used to the eye moving rapidly over near things and assembling a distant image. That image is not always correct, because the brain interpolates things (one of the reasons that a lot of eye-witness testimony is bollocks), and sometimes it fills in the gaps with things that should or might be there, but aren't.

Nearer stuff is impossible to perceive at a glance because I am having to do pretty much the same thing for near vision as the brain does for distance perception, and that's not instantaneous. It takes me enough time to check cross streets for oncoming traffic that I might as well just wait for the lights. I almost never jaywalk alone. Similarly, as I'm typing, I know what words should appear, and in what font, so my brain has an easier time of adding new words to a page of typing. Reading a previous paragraph, though, sets me back again. END OF EDIT

As usual, questions are welcome!

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.

Seeing From Eyes to Mind

Many years ago, I was taught in biology class that, while the eyes register visual stimuli, it is the brain that actually sees. I dutifully learnt the fact, but didn't ever truly believe it, or rather didn't really understand it. Experientially, as someone growing up with gradually worsening myopia (short sight), it seemed that my eyes were doing all the work, and I didn't comprehend how the brain was really involved.

Sure, I understood about binocular vision and depth perception and all that stuff, but it wasn't until I damaged my brain and suffered some visual problems as a result that it became much clearer. I now understand better than ever that the eyes 'merely' process visual information, the brain sees.

To explain how this has worked for me, I'm going to bore you with my current deficits again. As you may have gathered, 'deficit' is the charming circumlocution used to destigmatise phrases like 'brain damage' and 'disability' that nevertheless makes it pretty clear to me that I am less than once I was. While unfortunately I recall what it was like not having deficits, fortunately I also stand to recover the damage done; I prefer to focus on recovery than damage.

Anyway I have two or three deficits to contend with at the moment: double vision (diplopia) and one and a half syndrome, which may be the cause of the third, oscillopsia. My diplopia is diagonal, with the left eye image up and to the left of the right eye image. The oscillopsia I've had in both eyes, and is worse first thing in the morning, or late at night if I'm tired. I'm generally worse in all respects at those two times: Starting the day with a mug of tea seems to help.

One and a half syndrome is sufficiently rare that it causes excitement bordering on glee when experienced stroke neurologists encounter it. I'm often the first case they'll have seen outside of an exam question, and have in fact been asked if I would mind being an exam question (I don't mind at all: I'm game for anything that involves students in neurology and all research studies along the way). The wikipedia article describes the syndrome well, and I won't repeat that here, but you might want to have a read: one and a half syndrome.

What it means from the inside is that my eyesight is kind of screwed for the time being.

The most debilitating effect has been the diagonal diplopia. Soon after my stroke I found that it was practically impossible to operate with both eyes uncovered. My brain could make almost no sense of the competing visual fields offered by my eyes. This was quite peculiar, because although at a higher level I am able to recognise intellectually that I am only holding up a single right hand, my brain cannot rationalise the two hand images into a singular binocular image and insists on 'showing' both. The data one part of my brain is receiving can not be processed into the type of image another part of my brain is used to receiving, so it just gives up and passes on the two superimposed images.

The vertical offset in the diagonal plays havoc with my balance. Although proprioception is the lion's share of balance, there's a considerable visual component as well, and having one eye tell me that the floor is this way, while the other assures me that, no, the floor is that way is a surefire way to keep falling over. My proprioception was shot, too, so all in all the most convenient way to help my brain pick one image over the other and stick to it was to occlude one of my eyes. Since my left eye is the one that doesn't track to the left, and had developed a squint (which I thought was unspeakably ugly and made me more likely to be treated like a fool), I covered the left lens of my glasses with a special frosted covering, and tried to get on with it.

Operating with only one eye is more challenging than I had thought. I had an idea that it would be awkward, but had no idea quite how bad. My undying admiration goes to my friend with a glass eye. I have no idea how she makes everything appear so fluid and easy. Regardless, lack of depth perception has been unpleasant in many ways, and I'm reasonably confident in saying you will have no idea how unpleasant it is until you try it while your balance is already off.

Occluding my left eye made the diplopia manageable, so I can do things like use my laptop and read a book at all (slower, of course, but luckily I can still read), but it highlighted one of the features of one and a half syndrome: nystagmus in my right eye. When I look to the right, I'm able to do so with both eyeballs, but the right eyeball flicks rapidly to the center and back again. To add to this is the experience of oscillopsia: When I focus my gaze on a single point, my eyeballs wobble up and down a little..

These deficits are what has made it very clear that my brain is doing theseeing part. Most of my deficits are in fact neuro-muscular: There's nothing wrong with my eyeballs that wasn't wrong with them beforehand, instead it's the connection between my brain and my left lateral rectus that's been most clearly damaged (the VIth cranial nerve), and my brain's fine control over the whole extra-ocular musculature that has also suffered. 

To form a binocular image, the brain instructs the eyeballs to keep a single object focused on the macula, and combines the data that the two eyes present into a single image with depth This is something we learn as babies: Watch a six-month-old's eyes wander around and the focus sometime. Lacking the muscular control to move my left eye so that it focuses on the same spot as my right (remember the squint I mentioned?) my brain ends up with the double vision. With one eye effectively taken out of the picture, it should have been plain sailing, but it wasn't.

It soon became apparent to me that my right is moving involuntarily. Not much, but if I focus on one word on a page or screen, the motion is obvious to me. Despite this, though, I perceive a largely steady, static world around me. My eye is jiggling around a bit (not enough for truly comic effect, although I do have moments of feeling like Mad Eye Moody), but the world is still. This is the brain seeing. In effect, it's learned to recognise the jiggle as a kind of scanning of the world, and maintains a static image for me to use, because the alternative is chaos.

In effect, my brain is discarding the fuzzy occluded data from my left eye, then applying Occam's Razor to the data it's getting from my right eye, and providing me with that filtered perception. It makes a lot more sense that the world is not constantly jumping up and down, so my eyes' raw data has been subjected to reason at a very low level.

All of which is my own understanding of what's happening in my brain and eyes. Neurologists and ophthalmologists who actually want to talk to stroke patients about their vision are few and far between, and their message has been consistent on both continents: wait four to six months, eye problems with stroke usually clear up on their own. Given how terribly debilitating the visual problems I have are, and how depressing the apparent lack of change in my vision has occasionally been, it's a little surprising and a lot disappointing how little information was available to me. I guess four months doesn't seem that long when you're a clinician looking at a long stream of stroke sufferers ready to start their recovery (or decline), but it has felt like an age to me.

Happily, a few weeks ago I started to suspect that the diploplia was steadily resolving, and that seems to have continued. Like everything else with stroke recovery after the very early stages, it's abominably slow, but I think it's real. The difficulty is that my eyes don't get a lot of time to practice looking at stuff and being wrong and being corrected by my brain: That feedback loop that's been unused since I was a babe in arms needs some exercise. Fortunately there are two times when I take my glasses off, and I'm used to being unable to see (really strong myopia): in the shower and in the pool.

In both cases, I'm usually thinking about something else, so my eyes have free rein to do whatever they want; I put very few demands on them. In the shower, I'm focused on the mechanics of getting clean; in the pool, I'm concentrating mostly on the form of my breast stroke and being as even as possible. Hitting the end of the pool isn't really a problem. So it looks like, with the swimming in particular giving my eyes a bit of a workout, and with the exercise I've been forcing my extra-ocular muscles to take, the double vision is on a path to recovery.

The one and a half syndrome may be with me for good, but the squint is gone, my left eye is tracking in tandem with the right (mostly) now, and itseems to track to the left past the midline. Which is either a positive sign that I may recover from the syndrome, or evidence that the extra-ocular muscles are compensating cunningly. Finally, I have hope (but nothing else) that the oscillopsia is related to the double vision, with both eyes trying to find a common focus, and so far failing. If that's the case, all to the good. If not, well it could have been a whole lot worse.

State of the Newman

I had my strokes starting four months ago today; time for a round-up of what I think is happening in my brain and body at the moment.

Apart from, the problems common to most strokes, I have three principal deficits: left side facial paralysis, vision and right side weakness. The change in side (at the base of my neck) is because I had several strokes: different strokes, different deficits.

The left side facial paralysis has undoubtedly improved since I was last in New York, nearly three months ago, but slower than it did initially. I expect it to keep improving, but over months, rather than weeks, and it would not surprise me (and no longer horrifies me) that it might take years to effectively eliminate. One of the difficulties is in activating the many muscles of the face. I find I focus on muscles that I feel responding, often long before they visibly respond, and exercise those, there being no other way to get facial muscles to move independently.

One thing that helps get the paralyzed side moving unconsciously is conversation. Although it is hard to get stuck in to a good chat when much of my side is limited to the somewhat boring topic of me, my stroke, and my recovery. Anyway, if you see me in a hangout, or with video chat enabled and have exciting news, are morbidly curious, or just feel like saying hello, then do so!

My vision can be broken, think, into two discrete deficits: double vision(diplopia) and "one and a half syndrome." They're obviously related, but from where I'm sitting, can be addressed separately. The diplopia has been enormously debilitating: unaltered, I can't see well enough to walk without falling over, or even read, which has been a keystone in my life. To function, I've had my left eye occluded for most of the last few months: I can see a blurred, misty version of the world form my left, which my brain has got quite comfortable at rejecting, in favour of the sharper, more consistent and usually more reliable image that my right eye generates.

I'm starting to see signs that the diagonal diplopia is resolving. With many brain-related injuries to the sight, though, it can be hard to tell. I have never understood quite so well that the brain sees, while the eyes provide data. Nevertheless, this is on target for the ophthalmologists, who essentially said"wait 4-6 months and call us after that." It turns out that most visual problems resulting from stroke resolve themselves, although that's not guaranteed. I should add that to say they "resolve themselves" is to ignore the fact that I have been exercising particularly my left eye as best I can: what recovery is possible is, in my opinion, accelerated by effort if not initiated by it. Note that it is quite difficult to engage paralyzed extra-ocular muscles.

Which brings me to the one and a half syndrome which turns out to be really quite rare. Rare enough that I was asked if I would mind being in a database of patients with conditions that could be used for live neurology exam questions! Again, this seems to be improving with hard work: my left eye tracks past the midline now, where once it did not at all. Even if it doesn't resolve, I now find that this isn't so bad a thing, by comparison to the diplopia. It's far easier to compensate for, and would be much easier to live with. In other words, my vision overall is troubling me a lot less.

Finally, there's my right-side weakness. Recovering from this goes hand-in-hand with gaining cardiovascular fitness, because it's impossible to do the strength and endurance work necessary without being a lot fitter than a stroke and hospitalization left me. For pure CV fitness, recumbent cycle, rowing machine and treadmill are my staples. The elliptical walker / cross trainer is too hard--for now. With the treadmill, I've been increasing the incline rather than the speed to get an increase in heart rate, keeping the machine at a pace where I can still concentrate on my gait, and not limping. Re-learning how to walk before I run.

Almost all of the work to date has been focusing on walking and balance, somewhat ignoring my right arm. Part of the problem is that my arm is fairly strong--or seems that way with a traditional neurological assessment. But it's not nearly as strong as my brain expects it to be, and it's not strong enough for me to write smoothly. Added to which, my grip strength is greatly reduced, and my fingers are still less sensitive, leaving me clumsy. It's a bit like having two left hands, only the right-hand one is feebler. I've added in seated row, shoulder press and chest press to start working on the arm and shoulder, and next week more grip exercises shall ensue.

Swimming seems to allow me to address the right-side more holistically. Maintaining even buoyancy is instinctive and uses many more muscles of my body than anything else. Added to which, it's almost impossible to hurt yourself just by swimming. So, lots of swimming which seems to be having a generally beneficial effect. 

All in all, I'm definitely feeling better. Today I felt, I think for the first time, more like someone recovering from a stroke, than like someone surviving after a stroke.

(For the non-USians, this was a heeeelarious pun on the President's State of the Union address. A pun I am likely to perpetrate again.)

General Transatlantic Update

Since I've been offline for just under two weeks, I think a general update is in order.

First thing, first: I weathered the flight pretty well, arrived around 7:00am, saw my GP at 10:15am, saw the excellent and charming consultant at Homerton Hospital at about 4pm, and was promptly admitted after a general chat. I stayed on ward for a couple of days, before being transferred to a dedicated short-stay rehab unit. I'll be here until just before Christmas, but rehab is for life, children, not just for the holidays.

Three major problems remain, coinciding with the three initial "brain events" I had: face, vision, right side. I have a left side Bell's Palsy: the left side of my face is paralyzed. It is slowly coming back to life with diligent work and lots of strenuous face-pulling, which is good. More troubling is the fact that the damage extends do the left side of my throat, and my left vocal fold. Listening to a recording of my voice as it now stands was distressing: there's no colour at all, and I've got less than an octave in range. Happily, the voice therapy protocol I'm using works, so with luck, time and effort all will be well again.

My vision is currently buggered: I have a squint in the left eye that makes me look like dribbling idiot--unfortunate because I dribble at the moment (see above re: palsy)--which concerns me only slightly less than the double vision I have when using both eyes. It turns out that my eyes will at some point magically fix themselves in the next 4-6 months, and in the meantime I should just STFU and deal. In practice this means I have put a frosty coating over the left eye lens in my spectacles, and go about my business, hoping each morning that I will miraculously be able to see again. If they don't fix themselves, there apparently reamins the knife. I shudder.

The physio here is excellent: strict, observant, accurate and persistent. It helps, I think, that I'm relatively young and determined to walk the hell out of here. RIght now I'm back to walking with a (Zimmer) frame, but I expect to graduate to a quad stick and then a walking stick before long. It may surprise some, but I'm working bloody hard to walk (properly) again. Although it felt initially like a step backwards from Mt. Sinai, it isn't: I'm getting to address the core problem, which is my balance. I still have a mild tendency to keel over.

I have my own room, with its own bathroom (about which more anon), and I'm now allowed to walk its confines unaccompanied (a joy!), although nowhere else. My day is packed with a schedule (of my own devising) of physio, voice, speech, writing and typing therapies. I have to be careful not to reach an unproductive level of exhaustion... with which I'll sign off!
Until the next update, I remain
Stroker Ace