Bleak

Physical progress continues slowly, but the real news is the 99% certain rejection of my Medicaid claim on essentially entirely spurious grounds. Ergono rehab. Such is life. The view is a little bleak today.

In Which I Channel Amy Winehouse

They tried to make me go to rehab...

...and I said "yes, yes, yes!" Unfortunately, although we've spent a week with Medicaid paperwork (thanks, Dad!), it looks like tomorrow is the earliest I could get there, and it feels slow, slow, slow.

Apart from that, some progress continues (part of this post was touch-typed and laboriously corrected), so it's all good. Last night was bedlam between the snowstorm and Hallowe'en.

Toodle-pip!

(Hallowe'en was, indeed crazy. Don't get Hospital-sick on Hallowe'en.)

In Which I Channel Shakespeare

I am feeling contained today.

The excellent Mt. Sinai's rules have expanded to match my abilities as they increase, but it is my very abilities that constrain me.

My words rattle at the bars presented by my hands and voice. My world is cabinned by the box of my buggered vision; my mobility is cribb'd by the limits of my balance; my emotional repertoire is confined by my facial paralysis.

But I am straining at the fetters, and I can feel them creak.

Plus my pretension is unchanged!

Commentary

Still in 107, 8W, now waiting for medicaid approval and rehab. RH dexterity improved since yesterday: typing is almost possible on this MacBook! I think my vision .has slightly improved as well, which would be fantastic.
Thank you for all wondrous offers; my needs are currently few and remarkably well met!

(Comment to the "Stroke With Me" post.)

Stroke With Me

Alexander's Stroke With Me update: 2 weeks on!

A couple of weeks ago, I had three strokes. Two were very small ones in the white matter (sod you, Poirot), but one was a bit of a larger bleed in the brainstem. The latter was cause for considerable concern, but has not bled further (yay!), however over the following two days I had half a dozen or so more tiny strokes which have been a bit of a mystery.

The mystery has lain in the apparent lack of a reason why a 40-year-old should have multiple strokes like this. 

The excellent doctors have spent upwards of a million bucks trying to figure it out, to no avail, but do now know that my heart is in fine shape, I don't have cancer of the guts or nuts, nor an unusual Herpes variant or HIV. Much of which I could have told them for free. Still, I suppose one must get spinal tap practice where you can!


In all this I have been epically lucky: first, B--- was still home when my little adventure began. Second, while I am still waiting for super-powers to emerge, B---'s have just been revealed: he's been a total hero.

Third, while it's impossible to deny that there has been some nerve damage, apart from a bit of facial paralysis, it all seems to be fine motor control, which has improved daily.

Finally, I have had many calls and visits and bananas and much tea from friends and family, which have all been remarkably therapeutic.
Next stop is rehab, once the insurance cones through, which is a little bit of a concern, but I remain sure that all wil be well

- Alexander

(It took most of the day to write this Google+ post)

Fancy new room!

New room, Central Park view, and best of all, a shower have left me feeling chipper.

Improved:walking, sitting and standing. RH cooordination
No Detectable change: vision.

Social Obligations Persist

Hey! Thanks for all the comments. They are much appreciated. Eventually, i wii\ll get to each of them in turn, but I am without my personal secretary, this morning, so it may take a while,

Iam walking, rather unsteadily, and with a frame, but much progress there.
I can feed and water myself with unsurprisingly no difficulty swallowing..

Last night, I played hot to _Spinal Tap,_who were less amusing than advertised,
The big news from yesterday was from thr neuro-opthalmologist: i expect to recover fully *eventually.

That's it for now, it took about an hour to type this!

(This was a comment on a G+ post, and I am normally very persnickety about spelling and grammar, so typing "hot" for "host" when joking about lumbar punctures gives you an idea of the damage at the time.)

Chat is also hard

(Chat transcript with a friend out of town. I was typing as fast as I could.)

11:06 AM me: yo

 K----: HEY!!!!!!

  I hate that I have to ask this, but how are you doing buddy? J-- and I are worried sick

 me: so this sucks ass

11:07 AM K----: lol, not in a good way at least

 me: so-so...

  ssme things

11:08 AM are coming back

  quuite quickly

 K----: that is good. from what everyone says your cognitive skills haven't been hit by the stroke

11:09 AM me: lycky in that

 K----: they know what caused it or the docs still in the dark?

 me: there is stiill the potential

11:10 AM for thr brain stem to bleed more

  which would likely be bad

11:11 AM cause: unknown, but

  NOT HIV

 K----: that is good

 me: NOT nut cancer

 K----: too much WoW?

11:12 AM me: lots of NOT, not much THIS

11:13 AM K----: do they consider you stable at this point or are they concerned for smaller strokes?

8 minutes

11:22 AM me: Sorry doc break

  yes, they now have

 K----: no problem

11:23 AM me: no treatment options excepy rehab

11:24 AM which will start as soon as the insurance is sorted

 K----: yeah, what is up with that? Do you have any options?

11:25 AM me: rehab or insurance?

11:26 AM rehab: bring it

11:27 AM K----: insurance

11:28 AM me: ins: not thinking about it

11:29 AM lcan barely read, so it's too much to wotty about

 K----: understandable

 me: worry

 K----: if you need to flee creditors, you have a place in Chicago :)

11:30 AM me: thanks <3

11:31 AM g2g tired head now!

 K----: get your rest brother. J-- and I love ya :)

11:32 AM me: tale care!

Email is hard

oops. hard to tyype and easy to send too soon.

Speech is intelligible and clearing daily.

iam walking but wobbly from both minor nerve damage and the damn bedresst.

I am sure in a few weeks this will seem an unpleasant dream, although for now, it''s rather hard work.

love, always,

AJllent.

st

Most worrying were my eyes, which have some motor muscle damage and double vision which makes reading very very hard
. The neuroopthalmologist assures me that aall that damage is recoverable, and if not, treatable, which is exce

(Email reply to my mother. At the time I could not read well enough to see that the cursor had moved,)

Email failure

ghnkja

That was Alexander's attempt at writing. The rest is dictated to me (B---) and he promises to write as soon as he's less of a gimp, and he's grateful to hear from you.

(Email attempt)

First Google+ Update (Dictated)

Hello friends. Sorry I've been somewhat absent here. I've been slightly busy having strokes all over New York. A week ago in a stroke of genius I started in my apartment, then was at Mt. Sinai Queens by a stroke of luck when the next round happened and have since been transferred to Mt. Sinai Manhattan. Visitors are very welcome to come and laugh at me as I spill tea and flail with a walker. I'm currently in room 101A in ward 8W in the Guggenheim Pavilion. I'm not certain what the visiting hours are but I believe they should be on the Mt. Sinai website.

P.S. - Percoset is really good stuff.

Love,
Alexander

Email to Dad and Stepmom

Dear Dad,

Had a few small strokes a week ago. No need to panic. Damage mostly recoverable. Comfortable in Mt. Sinai Hospital. Excellent roommate B--- has been a hero. Life goes on. Will call when it's easier to do so.

Lots of love,

AJ

(Email, dictated. I had kept quiet to the UK while in the ICU)

Email to Mom

Hi darling,

Sorry for taking so long to reply. Only just got connected again. Circumstances have been a little challenging. A week ago I had a few small strokes, and I'm currently recovering in comfort at Mt. Sinai hospital. Recovery is going very well, heart is in top health. No need to rush over here or anything silly, mostly a question of rest, recovery, and rehab right now. Love you always. Will speak when it's easier to phone.

AJ

(Email to my mom, dictated.)

One Life Ends

At about 7:30am EST on Tuesday 11th October, 2011, I had the first of many strokes. These posts are the messages I first sent friends and then made public, and then my further journey into recovery. Discovering mental strength and physical weakness, learning about anatomy and neurology, experiencing determination and depression.

I'm this blog in the hope that my journey will be of some use to other sufferers of stroke, their carers, and their friends.

- Alexander

Some posts that might be interesting for the first-time visitor:

• The ultimate urine victory (cross your legs now).
• My three month update, which paints a pretty accurate picture.
• A post I wrote about exercise, which is good for you.
• The first Tale from Stroke-land that I wrote. These are all a laugh riot.
• A post about fear and compassion which ends with another Tale.
• When some friends had success with it, I wrote about exercise made easy.
• I got depressed. Then I got better. Then I fell over!
• How the world looks to me. It's not great.