Wednesday, March 21, 2012

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?

Wednesday, March 14, 2012

Hair or No Hair?

Since you in the US must be dying for a look at me, here's a photo I took this morning on the way to the gym. Note:
- stick conveniently parked in pocket,
- left lens still occluded,
- paunch taking its time to diminish,
- forearms showing a bit of the weight loss, and
- hair. I am not a fan of this latter. Agree/disagree in comments, please.

(I ended up keeping the hair because shaving it takes too long and is too dodgy with a tremor.)

Tuesday, March 13, 2012

Why Today Sucks

Why today doesn't suck: there's a very long list of reasons why I've been lucky, I'm making progress, and so on. None of which matter because today sucks.

Why today sucks: 
1. It just does. I started the day grouchy and it didn't get any better.
2. I could see improvement in my morning exercise, but didn't care becausethat one exercise is still hard. It's extra-frustrating because it involves not falling over, and I suck at the 'not' part.
3. My disabled railcard application was rejected because I accidentally checked Mastercard (like my Citi card), not Visa (like my UK bank). This is doubly egregious because next Tuesday's trip to London will now be even more expensive, and the number of a card defines the card type. Any system or form that requires card type has a lazy, ignorant or stupid programmer at the end of it. Damn them all to hell.
4. I have to jailbreak my iPhone to be able to use it in the UK and avoid the US telcos outrageous charges. It's bad enough that the monthly cost of using the phone is between three and four times as expensive in the US, it's bad enough that roaming charges are a way for two telcos to fleece you where one would do, but it's unpardonable that AT&T refuse to unlock iPhones, even when they're out of contract. I feel a sternly worded letter to my congresscritter and senators coming on.
5. I'm sure there's other reasons, but that will do for now. I'm simply not in asweetness and light kind of mood.

All in all, I'm fed up today, but dark chocolate is making things better. Also some judicious shouting on the telephone.

Monday, March 12, 2012

Daily Routine

This is roughly what a typical day, looks like at the moment:

6:30-7:00 Wake up and get up. Time dictated by Sleep Cycle app. Take enormous quantities of drugs, mostly blood pressure meds. Getting up is slow, and I'm usually fairly unsteady first thing.
7:15-8:15 Physio and other exercises. I've started to include things like crunches and planks to further improve core strength. By the end, I am a bit more steady.
8:30-9:15 Shower, shave, dress. I'm back to wet shaving myself, and showering is much less of a chore than it was for a while. My balance while in the shower itself is good, and toweling off is easier. I use the whole shower through dressing experience as an opportunity to keep stretching myself. Mostly involving balancing on one leg for short controlled periods, which is now far from automatic.
9:15-9:30 Another exercise with the balance mat; a block of special foam that I have to stand on, or step onto and off. This thing becomes increasingly irritating, as it's very hard to see any progress. Of course, the reality is that I can do things on it now that I couldn't attempt six weeks ago, but it's still annoying.
9:30-10:00 Breakfast. Pineapple juice and cereal with milk. I get about 2 servings of fruit from the juice and dried fruit in the cereal. I should go back to making oatmeal because the soluble fibre is so good, but I've been a bit lazy.
10:11:30 Email, some writing, getting ready for the gym, a bit of G+, whatever. Touch typing is faster than it was 5 months ago, but definitely slower in the right hand than it was 6 months ago.
11:45-13:00 Gym. Typically 25-40 minutes of cardio, some weights and then finish off with some walking practice on the treadmill. Everything now gets logged in Fitocracy, except the walking, since I tend not to get my heart rate high enough.
13:00-13:30 Swim. I'm up to 600m breast stroke, and I'm working on extending that. I stretch between each set of 4 or 2 25m lengths, counting the stretch in breaths.
14:00-14:30 Lunch. I've usually had some fruit before going to the gym, but I'm often quite hungry by now. Fortunately (?) I can only eat slowly.
14:30-18:30 "Work" which is variously email, writing. dealing with whatever's come up. Most recently converted my sister's old laptop to dual-boot ubuntu as a first step to weaning the family off Windows, which I may have mentioned is inherently bad for my blood pressure.
18:30-19:00 Some more physio on the wretched balance cushion.
19:00-20:00 Watch my excellent cousin Cathy read the news on Channel 4. There are other people, too, but she's the best, obviously. Try not to stab their culture correspondent in the neck.
20:00-21:00 Dinner. Om nom nom. Again, I've often snacked on fruit at about 5 or 6 pm, and drink plenty of water during the day.
21:00-22:00 Read, telly, or whatever; I'm not that taken by most telly, but I do like to read before...
22:00 Bedtime! This drifts out towards 23:00, but rarely much later than that.

I also work face, mouth and hand exercise into there, whenever I remember to have a spare moment. Often while lying in bed.

I'm working on speeding up some of the slownesses, so that it will become feasible to be rising early and going to the gym, having a full day's work, and a bit of evening time, but I reckon my working day is going to be pretty full when I do get back to work. That's OK, some of the crazier expectations of US working practice can be managed away with hard work. 

There's gaps because sometimes things just take longer than they used to (or ought to), and that's the way it goes. I keep telling myself it's getting better, and I'm sure it is, but probably too slowly to notice.

Sunday, March 11, 2012

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.

Wednesday, March 7, 2012

A Tale from Stroke-Land

A tale from stroke-land. I went for a coffee after a very long and slightly tedious induction into a research study*, and got it in a cup to go. Now I'm sure you all know this, since you don't live under rocks, but a typical sippy cup lid has two openings: one large one at the edge for the coffee to come out of, and a smaller one, often in the middle of a recycling logo, for air to flow into while coffee flows out. If the lid is properly constructed, air and coffee both flow smoothly, rather than having jerky splashes of scalding fluid and the like.

Alas, the second, air aperture was, as it so often is, completely inadequate, and thanks to coffee splashing against it from the inside was quite closed. No problem! Take the cup back to the counter, which was otherwise unoccupied, and ask to borrow a pen or pencil to poke a bigger hole. I have done this many times.

What's new is that now one of my glasses lenses is occluded, the left side of my face is still largely palsied, although no longer actually droopy, and I walk with a stick.

"This hole here is where the coffee comes out."

I shit you not. The young lady in question assumed I was too stupid or brain damaged to know which end the coffee came out. There followed, to the amusement of a nurse who had appeared wanting a coffee, a rapid discourse on elementary fluid dynamics, the correct application of the pencil, and a satisfying coffee.

To be fairer than I feel warranted, it's entirely possible she's encountered a whole string of patients incapable of drinking coffee, but it dismays me that her automatic response was to assume that I was loopy, rather than making sense. I went away with my objective achieved and a tasty coffee, but the lingering sense that she thought I was crazy for wanting a bigger air hole, and that she was used to dealing with all sorts of hospital crazies, so whatever. Before I looked the way I currently do, her assumptions would likely have been different.

* A study into the effects of adding use of the Wii to regular physio for stroke sufferers who have dominant side deficits. I don't find out until next Tuesday whether I get a Wii for six weeks, or I'm in the control group.

Tuesday, March 6, 2012

Perchance To Dream

One of the most common effects of stroke is that you sleep more. At least that's the received wisdom. And for a while after I first had the stroke, I certainly did, as some of the wonderful visitors I had can attest: At least one person shlepped up to Mt. Sinai to find me slumbering beatifically (I assume), and went away again without me waking for an hour or more. Kudos to them.

However, as I progressed through rehab, my sleep was disturbed. Part of the problem is that my left eye (still) won't rest closed. If I jam my face into the pillow just right then it closes properly, but while in the pleasantly dark in-patient rehab facility, I was considered at risk of falling, which apparently included falling out of bed, so someone would poke their head around the door softly to check that I wasn't flailing about on the floor. No matter how quiet they were (which was variable), they admitted light to the room, and my brain, receiving the light from the open eye, would wake me up. Usually after the offending dutiful carers were gone, making shouted remonstrations impractical as well as ill-mannered.

This contributed to what I now think of as "my bad week" when I was tired, irascible, depressed, reluctant to do exercises and generally unpleasant. Or even more unpleasant than usual depending on how well you know me, and your perspective. 

As time has progressed, however, I haven't had any external factors to blame for interrupted sleep, and I realise that unlike every other stroke sufferer I've met or read about, I sleep less than I did before. Or at least I think I sleep less, but maybe the reality is that I sleep about the same, but became hyper-aware of being awake for the brief moments I was awake.

Over a few weeks it became clear that, although I was aware of being awake for short periods, this seemed to have no bearing on how tired I actually felt,how much I could do in the gym, or anything else except my mood. The very idea that I had slept poorly made me grouchy. I decided to relax a bit about being awake whenever I was awake, and remember that I was getting several chunks of good sleep anyway, and made the 'problem' just go away by thinking about it differently.

Now, I don't stress out when I'm awake in the middle of the night, I just turn on the light and read for an hour or two, then go back to sleep. The timely article about historical second sleeps helped me not care about being awake, too.

Recently I found a way to be a bit more empirical about how long I'm actually sleeping, using the Sleep Cycle alarm clock app. Its daily graph of when I was awake or asleep (using the iPhone's accelerometer and how much I move about) is not enormously accurate, or particularly scientific, but it works well enough for me. It's confirmed that I'm sleeping less than I used to, but also that I'm getting more sleep than my awareness of being awake would lead me to believe. 

TL;DR: My brain (and brain injury) are weird, I sleep less than before my stroke, but more than I think.

Thursday, March 1, 2012


I've been wondering for a while why my right leg has been all crook (beneath the obvious you had a stroke surface, of course), and I think I've figured it out and started to correct the problem: it certainly feels like I'm walking better.

When I first started to recover, the muscles of my right pelvis and butt weren't strong enough to support my weight naturally, so they would kind of lock, leading to a sort of stiff-legged limp. They're stronger now, but my gait was still stiff and weird.

I knew that my pelvis was sort of tight, rather than loose and fluid, so I figured that was related. I knew also that my glutes had got a lot of work, and should be comfortably strong enough to support me, but that when I stagger or stumble, it's usually to the right, and my right glute max seemed to be failing.

The problem seems to be that I lacked swish. Although it's not typically obvious in WASPy men (unless we're also streetwalkers), everyone's butt swishes from side to side a bit as they walk. Because at some point I hadn't had the strength to do so, I learned unconsciously to protect against that motion, and never un-learned the rigid protection when I finally had the strength for my pelvis to move.

So, by putting what feels like an exaggerated swish in my gait, I am quite a lot more stable. As I lose the automatic protection, the feeling of exaggeration will mostly diminish, but like with a lot of things, my brain is having to re-learn what to expect from my right side as 'normal,' so it may take a while.