Living with ALS
RavenP99 (Oct 4, 2009 1:57:35 PM)
RavenP99 (Oct 4, 2009 3:24:42 PM)
(This user has left DigiChat)
paper (Oct 4, 2009 3:47:24 PM)
(This user has entered Living with ALS)
paper (Oct 4, 2009 3:47:41 PM)
(This user has left DigiChat)
RavenP99 (Oct 4, 2009 3:47:59 PM)
(This user has entered Living with ALS)
westjlittle (Oct 4, 2009 3:58:24 PM)
(This user has entered Living with ALS)
RavenP99 (Oct 4, 2009 3:58:41 PM)
hi
westjlittle (Oct 4, 2009 3:58:54 PM)
hi
RavenP99 (Oct 4, 2009 3:59:04 PM)
how are you?
westjlittle (Oct 4, 2009 3:59:29 PM)
i'm fine and you?
RavenP99 (Oct 4, 2009 3:59:58 PM)
not too bad
RavenP99 (Oct 4, 2009 4:00:19 PM)
where are you?
westjlittle (Oct 4, 2009 4:00:29 PM)
denver
RavenP99 (Oct 4, 2009 4:00:50 PM)
watching the football game?
westjlittle (Oct 4, 2009 4:01:34 PM)
actually no, watching the ken burns park show
RavenP99 (Oct 4, 2009 4:02:01 PM)
cool
westjlittle (Oct 4, 2009 4:02:08 PM)
i like college football
westjlittle (Oct 4, 2009 4:02:17 PM)
not pro
RavenP99 (Oct 4, 2009 4:02:19 PM)
dallas is winning10-0
RavenP99 (Oct 4, 2009 4:02:29 PM)
k
westjlittle (Oct 4, 2009 4:02:38 PM)
where are you
RavenP99 (Oct 4, 2009 4:02:43 PM)
I'm more of a hockey fan
RavenP99 (Oct 4, 2009 4:02:52 PM)
Florida
westjlittle (Oct 4, 2009 4:03:16 PM)
do you know jim
RavenP99 (Oct 4, 2009 4:03:26 PM)
jimva?
westjlittle (Oct 4, 2009 4:03:33 PM)
yes
RavenP99 (Oct 4, 2009 4:03:37 PM)
yes
RavenP99 (Oct 4, 2009 4:04:03 PM)
hes coming down to Daytona
westjlittle (Oct 4, 2009 4:04:06 PM)
where in FL
RavenP99 (Oct 4, 2009 4:04:19 PM)
i'm in jacksonville
westjlittle (Oct 4, 2009 4:04:21 PM)
today?
RavenP99 (Oct 4, 2009 4:04:34 PM)
think the 17th
westjlittle (Oct 4, 2009 4:05:21 PM)
are you a PALS?
RavenP99 (Oct 4, 2009 4:05:36 PM)
no
westjlittle (Oct 4, 2009 4:05:55 PM)
caregiver?
RavenP99 (Oct 4, 2009 4:05:59 PM)
ALS
westjlittle (Oct 4, 2009 4:06:17 PM)
i was dx in 06
westjlittle (Oct 4, 2009 4:06:59 PM)
PALS = person with ALS
RavenP99 (Oct 4, 2009 4:07:56 PM)
feb this year,,but started last nov...was busy falling down breaking my legs..so had to wait to get them off before they could test me
RavenP99 (Oct 4, 2009 4:08:04 PM)
oh ok
westjlittle (Oct 4, 2009 4:08:54 PM)
i had foot drop first but it took slurred speech for dx
RavenP99 (Oct 4, 2009 4:10:08 PM)
my left foot started to drop first,,then fell broke my right leg..before cast came off fell broke left leg
westjlittle (Oct 4, 2009 4:10:20 PM)
ouch
RavenP99 (Oct 4, 2009 4:10:50 PM)
my father died over 34 years ago with als..so had a clue before drs told me
westjlittle (Oct 4, 2009 4:11:16 PM)
i am 44 and thought i twisted ankle while jogging
RavenP99 (Oct 4, 2009 4:11:32 PM)
im 46
RavenP99 (Oct 4, 2009 4:11:47 PM)
my father was 45 when he died
westjlittle (Oct 4, 2009 4:12:16 PM)
have you been tested for sod2?
RavenP99 (Oct 4, 2009 4:12:37 PM)
yes..twice
RavenP99 (Oct 4, 2009 4:13:01 PM)
said it was negative
westjlittle (Oct 4, 2009 4:13:10 PM)
hmmm
westjlittle (Oct 4, 2009 4:13:22 PM)
surprising
westjlittle (Oct 4, 2009 4:13:53 PM)
how old were you when d ad died?
RavenP99 (Oct 4, 2009 4:14:03 PM)
12
westjlittle (Oct 4, 2009 4:14:22 PM)
i have two boys 7 and 5
RavenP99 (Oct 4, 2009 4:14:55 PM)
2 boys 22-20 1 daughter 18
westjlittle (Oct 4, 2009 4:15:11 PM)
they are handling well so far but any advice?
RavenP99 (Oct 4, 2009 4:16:38 PM)
well they don't live by me..and must be very busy cause don't hear much from them
RavenP99 (Oct 4, 2009 4:17:42 PM)
but have custady of my great neice and nephew who are 13 and 7
RavenP99 (Oct 4, 2009 4:18:10 PM)
Gavin the 7 year hold helps me the most
RavenP99 (Oct 4, 2009 4:18:36 PM)
also live with my 81 year old mother
RavenP99 (Oct 4, 2009 4:18:50 PM)
am always on the go
westjlittle (Oct 4, 2009 4:19:06 PM)
i'm sure that's a long story
westjlittle (Oct 4, 2009 4:20:06 PM)
my boys can tie down wheelchair in van
westjlittle (Oct 4, 2009 4:20:43 PM)
but worry they don't get father play time
westjlittle (Oct 4, 2009 4:23:54 PM)
do you still work?
RavenP99 (Oct 4, 2009 4:23:58 PM)
no
westjlittle (Oct 4, 2009 4:24:14 PM)
i have keep working
westjlittle (Oct 4, 2009 4:24:35 PM)
i write software
RavenP99 (Oct 4, 2009 4:25:20 PM)
cool
westjlittle (Oct 4, 2009 4:26:41 PM)
what is your status? I'm in chair and use bipap all day
RavenP99 (Oct 4, 2009 4:26:59 PM)
I have 2 apo right now
RavenP99 (Oct 4, 2009 4:27:05 PM)
use a cane
westjlittle (Oct 4, 2009 4:27:09 PM)
i can type slowly
RavenP99 (Oct 4, 2009 4:27:39 PM)
just got my hospital bed..kinda sucks,,went from a queen to a twin
RavenP99 (Oct 4, 2009 4:27:54 PM)
think I'm going to fall off
westjlittle (Oct 4, 2009 4:28:28 PM)
really? i'm trying to get one now
RavenP99 (Oct 4, 2009 4:29:32 PM)
the kept calling me...till I finall said yes
RavenP99 (Oct 4, 2009 4:30:09 PM)
don;t really need it yet..but was making my room easier to live in so..
westjlittle (Oct 4, 2009 4:30:43 PM)
who called?
westjlittle (Oct 4, 2009 4:31:00 PM)
medicare?
RavenP99 (Oct 4, 2009 4:31:51 PM)
I have tricare prime,,,,medicare,,,and the MDA helps
RavenP99 (Oct 4, 2009 4:32:29 PM)
medicade.,,,,not medicare...sorry
westjlittle (Oct 4, 2009 4:33:18 PM)
i am trying to get everything while still wrking
westjlittle (Oct 4, 2009 4:34:02 PM)
what did you do?
westjlittle (Oct 4, 2009 4:34:39 PM)
i'm lucky i can still wrok
RavenP99 (Oct 4, 2009 4:34:54 PM)
I really never worked..was a housewife for 20 years,,,the hubby divorced me after 24 years,,
RavenP99 (Oct 4, 2009 4:35:25 PM)
the moved down here to take of my mom and the 2 kids..so little busy to work
westjlittle (Oct 4, 2009 4:36:06 PM)
what is plan for kids?
RavenP99 (Oct 4, 2009 4:36:15 PM)
I work with one of my sister,,,she is an artist and I do some of the glaze work and other things
westjlittle (Oct 4, 2009 4:37:48 PM)
my wife helps me do all things
RavenP99 (Oct 4, 2009 4:38:00 PM)
well hopefully their mother can get her act together and get them back,,,but looks bleak,,,so guees to the other grandmother, they have different fathers whom have never been in the picture
westjlittle (Oct 4, 2009 4:38:28 PM)
sigh
westjlittle (Oct 4, 2009 4:39:04 PM)
a lot to handle
RavenP99 (Oct 4, 2009 4:39:07 PM)
yup
RavenP99 (Oct 4, 2009 4:39:26 PM)
was only home for about 30 mins all day yesterday
westjlittle (Oct 4, 2009 4:40:27 PM)
i was fairly independent until a year ago
RavenP99 (Oct 4, 2009 4:40:57 PM)
Gavin and I went to yard sales startingat 8am,,,K-mart,,,then went to see toy story 1 and 2 in 3D which was 3 hours long....then around 4 went to my friends house was her birthday,,,got home around 11
westjlittle (Oct 4, 2009 4:41:08 PM)
now i can't really be left alone
RavenP99 (Oct 4, 2009 4:41:32 PM)
beat them all in nintindo wei...only bowling I can still do..
RavenP99 (Oct 4, 2009 4:41:35 PM)
:-)
RavenP99 (Oct 4, 2009 4:42:15 PM)
Im not there yet,,,somedays I wish I was alone just for a bit
westjlittle (Oct 4, 2009 4:42:38 PM)
that time is coming for you hopefully years from now but need to plan
RavenP99 (Oct 4, 2009 4:42:50 PM)
I know
RavenP99 (Oct 4, 2009 4:43:03 PM)
been though it all already
RavenP99 (Oct 4, 2009 4:43:14 PM)
my father stated the same way
RavenP99 (Oct 4, 2009 4:43:30 PM)
took care of him...so I know the end all too well
westjlittle (Oct 4, 2009 4:44:30 PM)
i'm going to vent and use retirement to pay
westjlittle (Oct 4, 2009 4:45:11 PM)
i figure i can pay a few years tehn medicaid
RavenP99 (Oct 4, 2009 4:46:07 PM)
so far haven't had to pay for anything....have MDA helped you yet?
westjlittle (Oct 4, 2009 4:46:53 PM)
i havent needed money since work insurance is good
RavenP99 (Oct 4, 2009 4:46:59 PM)
cool
RavenP99 (Oct 4, 2009 4:47:25 PM)
what upsets me...no insurans helps with bathroom stuff
RavenP99 (Oct 4, 2009 4:47:40 PM)
says it a luxary
RavenP99 (Oct 4, 2009 4:47:45 PM)
ya right
westjlittle (Oct 4, 2009 4:47:49 PM)
i may need grant for speech machine
RavenP99 (Oct 4, 2009 4:48:10 PM)
kinda like Steven hawkins?
westjlittle (Oct 4, 2009 4:48:21 PM)
yes
westjlittle (Oct 4, 2009 4:48:55 PM)
i need the eye gaze thing
RavenP99 (Oct 4, 2009 4:49:12 PM)
hmm
westjlittle (Oct 4, 2009 4:49:24 PM)
insurance wouldn't pay
westjlittle (Oct 4, 2009 4:49:41 PM)
7000
westjlittle (Oct 4, 2009 4:50:13 PM)
i have the talk part
westjlittle (Oct 4, 2009 4:50:31 PM)
dynavox vmax
RavenP99 (Oct 4, 2009 4:51:37 PM)
dang...the new breathing thing they showed us the last time at the support group..was 10.,000
westjlittle (Oct 4, 2009 4:52:16 PM)
watching game now
westjlittle (Oct 4, 2009 4:52:29 PM)
10-7
RavenP99 (Oct 4, 2009 4:52:40 PM)
yup
RavenP99 (Oct 4, 2009 4:52:48 PM)
oopps
westjlittle (Oct 4, 2009 4:52:51 PM)
fumble
RavenP99 (Oct 4, 2009 4:52:52 PM)
fumble
RavenP99 (Oct 4, 2009 4:53:43 PM)
what kind of software do you write?
westjlittle (Oct 4, 2009 4:54:40 PM)
it tests cellular phone networks.
RavenP99 (Oct 4, 2009 4:55:16 PM)
cool
westjlittle (Oct 4, 2009 4:55:28 PM)
sort of like the verizon comercial
westjlittle (Oct 4, 2009 4:55:57 PM)
but with instruments
RavenP99 (Oct 4, 2009 4:56:02 PM)
I got a free phone...not fancy,,,but free and free mins every month
westjlittle (Oct 4, 2009 4:56:19 PM)
how?
RavenP99 (Oct 4, 2009 4:56:50 PM)
It's called safelink,,,,since I have medicade,,,get it free
westjlittle (Oct 4, 2009 4:57:09 PM)
good to know
RavenP99 (Oct 4, 2009 4:57:36 PM)
ya..but like I said..not fancy....but I don;t need fancy
RavenP99 (Oct 4, 2009 4:59:00 PM)
denver got the ball back
westjlittle (Oct 4, 2009 4:59:10 PM)
i see
RavenP99 (Oct 4, 2009 4:59:38 PM)
I was a compter geek..but tech,,ran past me so quick
RavenP99 (Oct 4, 2009 5:00:50 PM)
way back,,I used to run a BBS,,,can buld my own desktop
westjlittle (Oct 4, 2009 5:01:03 PM)
i wrote my first softare in 10th grade on my apple II
westjlittle (Oct 4, 2009 5:01:13 PM)
82
RavenP99 (Oct 4, 2009 5:01:51 PM)
wow
westjlittle (Oct 4, 2009 5:02:11 PM)
remember when 56K was screaming fast
RavenP99 (Oct 4, 2009 5:02:18 PM)
hehehhheeh...ya
RavenP99 (Oct 4, 2009 5:02:57 PM)
90 gig hard drive was the bomb
westjlittle (Oct 4, 2009 5:02:59 PM)
i even did punch cards in physkics class
RavenP99 (Oct 4, 2009 5:03:14 PM)
pong
westjlittle (Oct 4, 2009 5:04:01 PM)
i have a 256 bit core memory. 14x14 invch circuit board
westjlittle (Oct 4, 2009 5:04:33 PM)
found in jjunk pile at work
RavenP99 (Oct 4, 2009 5:05:14 PM)
remember when cases had to be 3 feet tall
RavenP99 (Oct 4, 2009 5:05:36 PM)
now laptops are getting so tiny
westjlittle (Oct 4, 2009 5:05:45 PM)
5.25 floppy
RavenP99 (Oct 4, 2009 5:05:50 PM)
I bought a bigger laptop
RavenP99 (Oct 4, 2009 5:07:17 PM)
have yahoo chat?
westjlittle (Oct 4, 2009 5:07:43 PM)
i do but not on very often
RavenP99 (Oct 4, 2009 5:08:04 PM)
thought after the room closed we could still chat
westjlittle (Oct 4, 2009 5:08:38 PM)
it wont drop us
RavenP99 (Oct 4, 2009 5:08:46 PM)
oh..ok
RavenP99 (Oct 4, 2009 5:08:51 PM)
wasn;t sure
westjlittle (Oct 4, 2009 5:09:06 PM)
it will mobve to another room
RavenP99 (Oct 4, 2009 5:09:15 PM)
k
westjlittle (Oct 4, 2009 5:09:53 PM)
j.west at IEEE.ORG is my email
RavenP99 (Oct 4, 2009 5:10:03 PM)
k
RavenP99 (Oct 4, 2009 5:10:17 PM)
mary_aka_raven@yahoo.com
westjlittle (Oct 4, 2009 5:10:28 PM)
jim is my name
RavenP99 (Oct 4, 2009 5:10:34 PM)
Mary here
westjlittle (Oct 4, 2009 5:12:40 PM)
do you go to support group
RavenP99 (Oct 4, 2009 5:13:03 PM)
yes
RavenP99 (Oct 4, 2009 5:13:09 PM)
once a month
westjlittle (Oct 4, 2009 5:13:21 PM)
same here
RavenP99 (Oct 4, 2009 5:14:25 PM)
its kinda small one,,,thought there be more...
westjlittle (Oct 4, 2009 5:15:11 PM)
older PALS dont normaly go
RavenP99 (Oct 4, 2009 5:15:43 PM)
I think I;m the youngest one there
westjlittle (Oct 4, 2009 5:20:01 PM)
what i meant is most PALS are older and most dont go. ther are several hundred PALS in denver metro. i have met maybe 10
RavenP99 (Oct 4, 2009 5:20:44 PM)
ya...Jacksonville is pretty big....haven met that many
westjlittle (Oct 4, 2009 5:23:37 PM)
i'm pretty active raising money for mda
westjlittle (Oct 4, 2009 5:25:08 PM)
see http://www.9news.com/rss/article.aspx?storyid=109224
RavenP99 (Oct 4, 2009 5:28:44 PM)
wow...very cool
westjlittle (Oct 4, 2009 5:29:00 PM)
i was on local telethon too
RavenP99 (Oct 4, 2009 5:29:15 PM)
cool
RavenP99 (Oct 4, 2009 5:30:07 PM)
here the were talking about how much research cost...I call and told the how much the medicine cost...here..1,192.00
westjlittle (Oct 4, 2009 5:32:03 PM)
the event raised 300,000 last year
RavenP99 (Oct 4, 2009 5:32:20 PM)
:=)
RavenP99 (Oct 4, 2009 5:32:29 PM)
:-)
RavenP99 (Oct 4, 2009 5:34:33 PM)
I can get widows 7 free,,,think I should?
westjlittle (Oct 4, 2009 5:35:05 PM)
what are you using now
RavenP99 (Oct 4, 2009 5:35:22 PM)
vista
westjlittle (Oct 4, 2009 5:35:56 PM)
i would wait a few months
RavenP99 (Oct 4, 2009 5:36:01 PM)
k
westjlittle (Oct 4, 2009 5:36:23 PM)
i still use XP
westjlittle (Oct 4, 2009 5:36:47 PM)
work and home
RavenP99 (Oct 4, 2009 5:37:31 PM)
just bought this lap top about 2 months ago
westjlittle (Oct 4, 2009 5:38:28 PM)
we were forbidden to use vista at work
RavenP99 (Oct 4, 2009 5:40:58 PM)
hmmm
RavenP99 (Oct 4, 2009 5:41:58 PM)
wanna change places..85 here..54 there
westjlittle (Oct 4, 2009 5:42:11 PM)
no
westjlittle (Oct 4, 2009 5:43:10 PM)
i lived in gulfport ms for five years i understand
RavenP99 (Oct 4, 2009 5:43:23 PM)
ya...gonna be 90 again next week
westjlittle (Oct 4, 2009 5:43:54 PM)
humidity is the worst
RavenP99 (Oct 4, 2009 5:44:02 PM)
I lived in Maine,,,,loved it
westjlittle (Oct 4, 2009 5:45:55 PM)
did you go to acadia national park? it was on the show today
RavenP99 (Oct 4, 2009 5:46:34 PM)
yup
westjlittle (Oct 4, 2009 5:49:01 PM)
did you know it was privately financed?