Thursday, April 11, 2013

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.