TWO OF YOU TOLD MY NEIGHBOR ABOUT THIS BLOG. STOP IT!

i am only able to type this because Paulina is holding up my head

my main issue is that i cannt lift my head... the collar and forehead strap are n o good, trust me.

help me find a olution please. it hurts a lot.

as to the bed, my left shoulder colllapses and helps none. if you could pu t it inside a rigid frame,, it might make thigs ok.

heead fallls forward b/c rear neck muscles weak and front muscles tight after icu trauma. need GENTLE hanfs to lift it up ehich will streych and relax frontals paulina huty me when i asked her

most regretably, i will need your help to pee

i knoe -- yuk

not yet but soon, lock the door and i will lever up on the seat, then you pull down my shorts and hand me the plastic jug, thrn when i am donr, HOLD IT IN PLACE while i shake out, then hand me klleenex and pull up shorts

very weak. watch my closely and support, but never try to move my right limbs

p time

SNOT BLOCKS LEFT NOSTRIL -- HELP! SCARY IF THROAT CLOSES

have tried
no

tweezers

no

it is near edge

do not hold my head

20 percent still in there

not far, at edge

THANKS

no longer safe to stand and pee.

urinal please -- dont pull it away until i shake out the last drops

i'd like to teell you th details of my ICU stay, but i'm too exhausted still.

i was in the icu after a thrush-induced choking. o2 sat declined to 63 percent, heart rate 130, blood pressure 150.

but the next day, my blood gas analysis was normal, even for a healthy person.

should i go on a vent now?

so much love in the comments. thank you.

i put the suction device so far back in my mouth because it brings up more gunk and if someone else did it i would gag sooner

UPDATE:

a famous baseball player who tries to help fight ALS commented to this post. i blame magnetbabe. i don't follow baseball, but i bet that this is the pitcher who wore an ALS-related tag on his shoe once. that was a classy move. it's true that i wrote this update because of his celebrity (and to blame magnetbabe), but i ignore that and look on as yet another comment from a caring reader, a working stiff, who didn't ask to be athletic, or famous -- just like i never asked to be stricken, or so lucky.

u most hold it e/ onr hanf anf pudh eitj other

i am basically just protoplasm now, a carcass trying to breathe.

very hard to set me in bed properly

drape drool towel over and BEHIND pillow to anchor it, and give me another towel too, plus 2 ushirts

suction me first

LIFT my head, don't shove it

totally peed in my shorts while 'standing' in bathroom to pee. only my sister was here. that's not modesty, that taboo. my talk page:

you can help me using THIS PLAN:
all this in bathroom
put on plastic gloves
give me another towel
remove shoes, socks
i shove towel in crotch
you pull off shorts,
p ut onn socks not shoes
then pull new shorts up to knees
then you leave and i pull u p shorts

MOP AND BUCKET -- USE SHOWER DRAIN

don't mop 'up' - - just evict

bucket to s pread water

...then, the next day, with my sister again caring for me, i made a point to go pee early and often. that worked. but because they worried that the saliva-reduction drug would constipate me, they put me on Mirilax. when my sainted wife came home i again 'stood' to pee, and made a big incontinent poop on the floor. my voluntary muscles must be too weak to stop it. guess who cleaned it up.

it gets worse. two days later, around 5 pm, i was again peeing, and again could not hold back the poop. i think it was the miralax again -- though my final dose was monday. i hope i'm not incontinent now. (good news: i pooped in the toilet yesterday.) my heroic wife dealt with it, AGAIN. this is so unfair to her.

then that night at bedtime she had to call 911 because i could not get air.

very much hard slog, but my dear wife and our friends were SO helpful it was amazing. details later.

huge choking fit and LOTS of suctioning on rising yesterday, but none yet today and looking good.

i almost died. the 911 EMT saved me with 'jaw thrust.' choking to death is alarming but not scary. i have grace under pressure.

there is a black nose hair dangling from right nostril -- grab with tweezers and jerk SUDDENLY not slowly?

my left shoulder cup aches again

just where the ball joint is, towards the back

infussion drain time was 13 minutes, from 8:45 8:58

typical human stance: 'what i did was reasonable, as i've explained. when you do it back to me, it's angry revenge.'

And...

when i was at the campus newspaper at MPU (major, prestious university), we would vote on what columns and cartoons to run. the managing editor, a nice guy, had gotten his poorly-drawn, immature cartoon of which he was very fond approved the prior semester. this time, we all voted on it, and i was pleased to see it rejected. we all got up to leave. most did. suddenly one editor said the cartoon meant a lot to the M.E., and we should all vote again. we did, and with most of the staff gone and merely the editors remaining, it was voted back in. i don't like it when people mess with the agreed process on behalf of their perception of others' emotional needs.

it turns out that i thought that the proper process regarding writing was that anything was ok for others to write, but that they should then apologize for it, explain it, or stand by it. publication includes anything you write and show to someone else -- including private mail. one time a photographer snapped an unflattering shot of drunken local pols. this was in the days of film cameras, and the pols leaned hard on our top editor to get the negative -- lest the opposition could use the shot as ammo. top editor then sweated the photog. i told photog not to give in. i believed in truth.

he gave in, and the top editor gave the negative to the pols. i have contempt for those types of behaviors. i'm a marketplace-of-ideas guy. but most people do not have faith in open debate, they'd rather avoid honesty.

please open the clamp and pull it toward the end about 5 inches, but don't pull on my stomach...

My right arm is getting worse, and I often could not reach the clamp to operate it.

911 was here AGAIN yesterday. was 'standing' against wall in bathroom to pee. some poop came partly out. tried to sit. started gagging on sudden thick saliva. dear wife came in, pulled shorts up. big mistake. sat on toilet. sitting and leaning forward is my method of emergency breathing. the shorts were too slick and i could not sit up. try explaining this when you cannot talk or move or breathe. not her fault. she brought the suction machine, which helped. i leaned forehead sideways against sink, found that nostrils worked. 911 came. kids were so excited to learn and play. one EMT spent his whole time answering their questions about the equipment. after a long time, 45 minutes, i could breathe clearly again and they left. i am now on a saliva-reduction drug. i hope it doesn't thicken it. after an hour's effort, saintly wife had me in clean dry clothes again.

The ALS clinic says my weight is down 0.7 pounds to 130. Last time, my FVC was up from 59 to 76. This time, they said it was down to 50. I never feel short of breah. They say they're puzzled why I don't have more breathing distress. They want me to have a test involving 'discomfort:' a needle in an artery to monitor my CO2 and 02 levels. They are not interested that my 02 saturation is 98 to 99 percent. They measured my heart rate at 83, typical since my 20s.

i 'bounce' in the shower chair to get the soap off of my back -- and the chair back, because it makes me slide

i like it when you use the kleenex to dry the outer folds of my ear

Copied a saved game twice: to A and B. Opened B, deleted axeman, saved to B.

Compared A and B. 31 deltas: vast and verbose. I think that they deliberately introduce lots of chaff to make it hard to hack.

my left shoulder joint hurts, could you rub it? i can press your shoulder to show you where mine hurts

thanks

please hold up the food line so that the fluid flows to the end

higher

I moan and groan -- a lot, and loudly -- each time I shift position in bed. Guess who has to endure it.

You a stronger than me; Please don't crank down the valve on the food line so hard that I can't open it.

Three things prepare for a successful stand from the bed:

1. Bend my left leg under the bed DURING the lift, not after, as happened today.
2. Lean me forward. This was good.
3. Drape my right arm over the u-bar, as if over someone's shoulder.

Don't be so fierce about holding me in place that I can not move, can not shift my feet, can not drape my right arm over the u-bar.

If these three things are done, then stop talking, stop suggesting and worrying, and wait for my signal.

Thank you for your patience and love.

Bad episode choking on thick saliva yesterday, but usually had some air coming in. Dear wife had to call 911, but when they got here she'd already saved me. The EMT said my blood oxygen level was 98 percent. My talk page:

as soon as i used the yank¹, my mouth cd breathe -- thanks!

that bulb wd only be effective swept side to side on back of tongue

you are so good and i love you so much

She's been my comrade several times in struggles where life and death hung in the balance.



__________________
1. The suction machine.