Thursday, February 27, 2014

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.

Wednesday, February 26, 2014

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.

Friday, February 21, 2014

Eidetic Memory?

Since having the strokes, I have enjoyed joking about some of the aspects of brain damage. It has been amusing (to me, at least) to jest that I don't remember names because of my brain damage, rather than the truth that I have simply forgotten. The ironic humor for me is that most listeners don't know if I am lying or not. I could be telling the truth, after all.

The month or so before I had the strokes is gone. I have no memory of it at all. In fact, I have repeated almost verbatim discussions of great urgency that came to the same conclusion, and were thereby resolved, in the weeks before the strokes. I know because I have the email chains. Conversely, if you are expecting me to respond to email you sent in September or October 2011, good luck with that; you are going to be waiting for a long time.

The joke is on me, though. Two and a half years on, and I suspect that my memory has taken damage. It may just be that the relative monotony of my life at the moment makes things harder to remember, or that I am simply getting older, but I don't think so.

In some circles of friends, my memory is notorious for being poor. That's always been amusing but slightly unfair: it is the indexing that has failed me; once triggered, the memory itself is clear and thorough. This experience is different, though.

I've found to my surprise that there are events, places and even people that I have no memory of at all. I was quite comfortable with the idea of a lost month or so: there is no way to magically encode the events that are gone into long-term memory. The prospect of not recalling things apparently at random is unsettling.

Memory is unreliable. That's why I chose to record how I felt on 9th September 2001 that day (TL;DR: I was there). I knew that my impressions of the day would change in the years since, but they're still there. That is the novel sense for me: memory that is not necessarily merely unreliable, but wholly absent.

It would be much easier if only boring things were consigned to the mental black hole, but that doesn't seem to be the case. Interesting people, places or events are susceptible, too. It may be that I lose things when I'm tired, or when I'm paying particular attention to something else, I don't know.

The best I can manage is to be consistent in my behavior. Happily I am less fickle than ever, so when I think I wouldn't have done something that I don't recall, the chances are I didn't do it. Of course, those may be times that brain damage is making me behave erratically, but nobody has said anything yet, so I shall continue to assume that my mentality is essentially unaltered.

I'm still going to claim brain damage whenever I don't know your name, though.

Tuesday, February 18, 2014

Mind Matters

Brains are meat. Complex meat, but ultimately they are made of cells, fed by oxygenated, glucose-rich blood and as susceptible to damage or training as many other cell types. For example, when you train a muscle to stretch further, more than simply training the muscle fibers to extend further, you are training the stretch reflex in the brain to allow a deeper stretch. If the brain doesn't adapt at the same time as the muscle then you behave as though the muscle is shorter.

The mind is, according to many, harder to pin down, but I think it irrefutable that the brain is the substrate for the mind. It is easier, when practicing psychotherapy, for example, to consider the mind independently of the brain, but brain damage and psychopharmacology draw us back to the physicality of the brain, and the effect that changes to the brain have upon the mind. I think the converse is also true.*

The state of a mind affects the brain's behavior, that much is clear. When we're distracted, worried, or stressed, typically seen as conditions of the mind, we perform certain tasks less well; our brains work less well.  I contend that the mind affects brain (re)development in concrete biological ways. I think I'm living evidence that this is so, as is anyone who recovers from brain damage, whether from stroke, concussion, shrapnel, gunshot or any other cause.

There is a difficult line for neurologists to tread. On the one hand, recovery is possible in most cases if and only if a patient's mind believes that it is possible. On the other, even the most optimistic patient still has to put in a lot of effort over a long time to see results. I have tried to remain resolute, but I had little idea two years ago just how long it would take to recover. I think I have a better idea now, and it's a long time. 

Perhaps it is particular to stroke, or maybe it is just any brain damage that involves older people, but there is an infectious attitude of defeat to overcome. Add to that the depression that is a common result of brain damage and slow recovery, and it is difficult to break out of the pernicious state of mind that inhibits recovery.

The good news is that minds can, with difficulty, be controlled. We are conscious. We can make choices. We can recognize that the default despair is counter-productive. Above all, we can 'fake it, until we make it.' By doing so, we use our minds to control our actions until our brains encode that behavior as automatic. Anyone can do this. Those of us with brain damage must do this. 

* There is no inconsistency here with the belief of many that the mind has something like extra going on, call it a soul, divine spark, or what you will. I don't believe in anything supernatural, but my belief on the matter doesn't preclude that possibility.

Thursday, February 13, 2014

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. 

Sunday, February 9, 2014

A Drop in the Economic Bucket

This will not make sense if you don't live in the USA, or are unaware of one of the most extraordinary features of American life. Drug stores (pharmacies) sell tobacco and beer. If you grew up in the USA, that last sentence is deeply weird in the rest of the world. It's all part of what makes the USA exceptional, I guess.

When I get back to the USA, I shall change drug stores. Rite Aid has the closest pharmacy to me, and I would have switched long ago, since it is the slowest pharmacy, and the slowest drug store in the universe.

The next closest drug store to me is an additional long block away. That might not seem like much, but walking one more long block each way is a lot of work for me. Walking, and staying balanced, is still substantially harder than swimming.

What's prompted this change is the fact that CVS, the competing drug store, has announced that it will stop selling tobacco. The company will lose about $2B, which is less than 2% of their profit, but they have decided, as they treat more and more consumers with heart disease, high blood pressure, and other diseases linked to tobacco use, that the right thing to do is, in fact, the right thing to do.

I know that small incremental changes add up to large, visible effects. There may well be cases where individual action is good for nothing (although I can't think of one), but this is certainly not one of those cases. In a way, as in neurology, so in economics: I shall be making my own small difference.

Wednesday, February 5, 2014

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.