Friday, February 23, 2007

I came with the family to a support group they go to that the kids really enjoy. The crips gather in a room away from the kids. Aside from the moderatress, there was only one other person there besides me. At first I assumed he was staff. What follows is MY half on the conversation, saved to my talk document on my laptop.

i am brainhell. i came with my wife and our kids son and daughter

1st time

i will now dance and sing

i have (please be discreet and do not frightken my kids) ALS which is supposedly fatal and incurable

progressive degenerative neuromuscular disorder

i guess i am tonight’s only crip

more kleenex?

trash can?

glioma -- cripes. how old are you?

i guess i am not tonight’s only crip


was diagnosed at 41

your job?

tough physical work? skill though like

programmer ... any

retired immediately

gradual decline started using only wc in june

my neuro said ‘at least you didn’t have a glioma!’

repeat please

gallows humor

‘retire’ is just mwhat i call it. am on LTD and SS disb

longterm dis

my two cents: ‘retire’ and then get better and you can work then

i liked my work too

favor? can you adjust this headrest and then tighten it

your kids’ ages?

7, 4


they say he has ALS but he was 20 when he got it so it is likely PLS which is why he’s survived

probably yes

you need a wireless hotspot here for internet

i do not detect one here

off at night

my death, feh! what matters is the kids ... and i chose to be with them

true good point but they come home at 3? you at 6?

my very thin sister beat me at arm wrestling in the ER

i was ok but my feeding tube was blocked so they fixed it

2 mins to fix 3 hours afterwards waiting to be released

why scare a 7 and 4 year old? you have kids? ok
you have your schooling and opinions but i have kids. respectfully i say that

first house yep

a syptom of als is uncontrolled laughing and crying. i am lucky that mostly i laf. but sometimes...

u had brain surgery!?!??

shit oh dear

so i have had what you least want and perhaps vice versa

i know but i met another als guy (he’s happy too) but physically we’re so different

hot in here


nice meeting you both
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