Eighteen Months

It's odd that my SSDI assessment is today, exactly 18 months since I had a series of strokes. I often play down the difficulties I have - I don't want to be a whiner - and I'm trying to concentrate on the ability part of disability, inspired by this year's Paralympics amongst other things.

Today, though, I have to look medical orthodoxy in the eye and believe its depressing conclusions: I won't get any better from here. I think that's not true, but I am aiming to give orthodoxy the finger by continuing to improve, and in the meanwhile it's better not to be deluded (as they might think). So, reality check update.

Mental
As I will repeat to anyone that will listen, there is no sign of cognitive impairment. I think there is some damage, though, but I was smart enough before the damage that it's not measurable afterwards. It isn't major, but I am just not as sharp as I was. Maybe that's just because my brain is busy. Depression has been more significant since the stroke. It's hard to see a future being this crocked. It will be somewhat easier if the SSDI is approved because then I can make getting better a full-time occupation.

Facial
The palsy is slowly lifting, but the left corner of my mouth remains stubbornly inert, which means lopsided smiling and I have to be careful laughing and eating. I suspect some friends try to make me laugh when my mouth is full, but I'm OK with that. Bastards. I can just barely close my left eye, at night my eyes roll up a bit to get darkness.

Visual
This is the worst area, with least improvement. Specialists think there will be none. I believe my double vision is getting better, but it is glacially slow, and I still have double vision. I also have One and a Half Syndrome, and that may never go away, especially the nystagmus in the right eye. Harder to see from the outside, but pretty obvious to me is the oscillopsia, which is best illustrated in my post on how the world looks to me. It still looks like that.

Balance
I wobble and stagger, and occasionally fall down. I wrote about falling outside, which was the first time I went arse over tit outside in New York City, but a couple of weeks ago I fell in my own apartment, and every day I stop myself falling through conscious acts. I sway forwards and back without any apparent rhyme or reason when I don't have anything anchored (a hand or my ever-present stick). Honestly I can't tell if my fundamental ataxia has improved or as I suspect, my ability to handle it..

Tremor
The dysmetria continues in my right side. You should see me try to pick up dice. Or a pencil. It's pretty funny. Except that it isn't; I still can't carry fluids in my right hand without spilling them, eating is an adventure, cooking is a challenge, and folding clothes is a punishment worthy of the ancient Greeks.

Weakness
There's no doubt that I've got stronger. When I did the standard neurological test of squeezing pairs of my doctor's fingers, my grip is pretty strong. But the test is useless at determining how strong I was before, particularly relative to the left side. That's where much of my problem lies with strength, that, the tremor and the fact that stabilization muscles have got weaker.

So, that's the month's round-up of woes. It doesn't cover where I think I've improved, and nothing really explains how tiny the incremental improvements are. But I don't recommend having a stroke to find out. I'm about to set off for this assessment; I will probably be very early, but I'm still pretty bad at estimating travel times, so I hope the waiting room is nice.

Spring 2013 Monthly Update

It's time for another monthly update, and I looked back at my first March update for an idea of how I've progressed. In one thing, my weight, I've taken a step backwards, since I'm heavier now than I was then, but my pants (trousers) still fit, and I'm pretty sure some of that weight is muscle mass, since I am stronger now than I was then: I have the record from the last ASPIRE session, and where I was doing a lat pulldown of about 35lb (it was all in kg), now I do them at 140lb. Also, I'm pretty sure I couldn't do two sets of eight pull-ups then, so by that simple measure things have improved.

A friend pointed out at a birthday party on Saturday that I seem to do much better on pull exercises than on push ones. Apart from the fact that we were talking about fitness at a pancake party, this makes a lot of sense: the push exercises I do are almost all dumbbell exercises that take more stabilization than the pull exercises which tend towards raw strength. If I can strengthen the stabilizing muscles with pull exercise, then I might be able to accelerate recovery of the pushing motions. The push is already improving though; a 20lb dumbbell bench press is now as stable as a 10lb once was, and a 30lb dumbbell press as stable as a 20 used to be (not very).

I used to be able to bench over 200lb, but barbell exercises tend to use more weight, anyway, and I went and had a bunch of strokes, so it's no great surprise that I'm just managing 30% of that weight with dumbbells. Another reminder that comparing my performance to that of 20 years ago is stupid, futile, and a sure way to be disheartened. Now, I just make sure I'm improving week on week.

When I wrote an update a year ago, it was before the neuro-ophthalmologist said my eyesight and balance wouldn't improve and I said that:

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.

I still think I am right and the neurologist wrong, because my balance has improved, and my diplopia is gradually improving, contradicting him. The diplopia is muscular, so I still see no reason why it shouldn't continue to get better. Unfortunately it's pretty binary, like the tremor: it can improve lots, but until it's gone, it's as wretched as ever. I'm going to try to post soon about how I see the world at the moment, which might explain why, although these posts seem cogent enough (I hope!), working is extremely hard. I wouldn't hire me!

The irritation with nomenclature must be seasonal, because it bugged me a year ago, too. I still think it matters, though: once you've established the cause of a stroke, and are treating it, the person concerned is left dealing with the brain damage, and that's the more significant long-term thing. It also means that we can recover. As I've said before, if I'm outpacing a baby born when I had the stroke, I'm happy.

I'm doing less physically than I was a year ago, on paper, but at the same time I'm trying to lead a regular New York City life. It turns out that my life back in Dorset relied very heavily on other people doing things for me, and a lot of sitting down recuperating. Here in NYC, I've found that I don't yet have the endurance to lead a full, busy existence, so I'm getting used to leaving early, caffeinating with care and exercising a bit less, while working a bit harder generally.

On the material plane, things are rough. I just heard it's going to be at least a month before I get any Disability Insurance loot, and even then it's not certain. That means its normal for the process to last nearly a year after an event. (Six months before you can apply, then four months processing, then at least a month handling, plus go-see-our-doctor trips.) This is insurance for people who can't work; I have no idea how anyone is expected to go a year without income. I've survived through the generosity and kindness of family and friends, I don't know how else one does it.

The wait puts me in a strange sort of Schrödinger's Cat state of being broke now, but potentially fine in a month or so, which is weird and uncomfortable. I hate not being able to get my metaphorical round in, but I have to accept my reality at the moment, just as I accept that I can't go out without a stick, my fight hand sends coffee flying, and my eyes are weird. For now!

8 Month Downer

Eight months and counting, and I am at something of a low ebb.

Physically, I can point to the progress I've made, which is consistent but slow. My eyes continue to improve, although I sometimes worry that I'm deluding myself; it's worth it to remember that it takes babies a good six months to get their eye musculature coordinated, and that my diplopia is unlikely to resolve faster than that. Stroke is making me patient.

Sadly, I've confirmed that I have an intention tremor in my right arm and hand. and to date there's been nothing much that western medicine could do about it. Acupuncture has been generally good, though, and I try to remain optimistic that the needles will beat the tremor. There are worse things to suffer, of course, and learning to be left-handed wouldn't be the end of the world.

My left face is still palsied, and my left eye doesn't shut on its own still, but both are improving. Again, slowly.

I don't understand why my blood pressure remains so high without medication; I've added a beta blocker to the mix to the other three pills that are there to manage my hypertension. It seems unreal that, when I am fitter and healthier than I have been in many years, something so primitive and fundamental is beyond my power to affect without medicine.

As I improve physically, though, the brutal reality of life comes on the horizon; to date my focus has been on recovery. It is hard to laugh when every positive sign is met with yet another failure. It's been days since I last fell over, and at least then I didn't hurt myself at all, but any time I'm feeling a bit more deft, I can expect to land on my ass soon enough.

Excellent as it has been to recover in Dorset, I miss New York keenly, more for the friends I haven't seen in so long than anything else. 

This depression is no stranger, and even less a surprise now that I have brain damage. I know it will pass, and until then I just need to keep soldiering on towards recovery. Today, though, it feels like hard work.

Tremors

Ironically since I just decried most post-stroke tiredness as a learned behaviour, I had to take a rest this afternoon; I was just physically beat. 

I've been taking it fairly easy, given that I've had this chest bug: early nights, slow starts, no swimming, but I've still been exercising and stretching in the morning, and going to the gym. I guess I found out where my limits are at the moment; they keep getting better, which is good. 

I read recently, in a volume about stretching scientifically, that "flexibility improves from day to day, strength from week to week, speed from month to month, endurance from year to year." Now the person quoted (Ozolin) was talking about training Olympic athletes, but the biology is basically the same: it's going to take me a while to get my endurance back.

It has been something of a surprise, nevertheless, just how much having a relatively minor bug can take out of you. Normally, we'd mostly just shrug it off with some paracetamol and brazen it out. I count myself lucky that at present that's not an option for me: I get to experience full well how much effort we have to put in to fighting off an infection. I'm reminded that it really wasn't that long ago that a good bout of influenza could devastate a population.

All of which goes to say that my former employer, Google, had it right: when you have a bug, stay at home and get better. Don't bring it to the office to share, and don't go nuts working from home.

Which has nothing to do with what I wanted to talk about: myself, obviously. I have a tremor, and it seems to be getting worse (or not changing). It's in my right arm and hand, and I think it can be traced to muscle fibres in the bicep, forearm and hand that just won't relax. It's a pain in the neck because it means I can't hold a cup of fluid steady in my right hand (and guess where my stick is), and my writing is a lot worse than it would be without the tremor. 

It's clearly neurological; my guess is that those muscles were either contracted at a crucial moment of brain damage, which bites, or that they were not affected by the stroke, took on a lot of responsibility for making my hand and arm functional, and are now stuck, while the other muscles around fill in, and are acting against them (causing the intermittent tremor).

The biggest pain about the whole thing is that I have yet to come up with a strategy to fix this neural malfunction. I don't even know if my handwriting practice is actually reinforcing the tremor, which would be bad. Ditto with touch-typing, which has greatly improved, but the tremor renders slow.

I have an appointment with an acupuncturist, I'm continuing to learn and practice Tai Chi, I have another massage on Friday a foam roller (for self-myofascial release) arriving soon, and I continue to strengthen the muscles around the ones that are stuck, but I wonder if I just need time?