Living with ALS

mommazooms (Feb 8, 2010 2:10:58 PM)
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mommazooms (Feb 8, 2010 2:11:29 PM)
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mommazooms (Feb 8, 2010 2:22:49 PM)
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mommazooms (Feb 8, 2010 2:41:51 PM)
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pete46 (Feb 8, 2010 3:13:05 PM)
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Jim_VA (Feb 8, 2010 3:15:48 PM)
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pete46 (Feb 8, 2010 3:17:55 PM)
hi jim

Jim_VA (Feb 8, 2010 3:20:14 PM)
hi pete

Jim_VA (Feb 8, 2010 3:20:55 PM)
how are you

pete46 (Feb 8, 2010 3:21:19 PM)
good jim, good game yesterday

Jim_VA (Feb 8, 2010 3:25:52 PM)
yes it was

Jim_VA (Feb 8, 2010 3:28:45 PM)
my brother is on the way here

westjlittle (Feb 8, 2010 3:33:44 PM)
(This user has entered Living with ALS)

pete46 (Feb 8, 2010 3:34:07 PM)
hey jim how are you feeling?

westjlittle (Feb 8, 2010 3:34:19 PM)
hi guys

pete46 (Feb 8, 2010 3:34:33 PM)
are you home?

westjlittle (Feb 8, 2010 3:35:15 PM)
still have runs,no,hospital wifi

westjlittle (Feb 8, 2010 3:35:49 PM)
they say friday

Jim_VA (Feb 8, 2010 3:35:57 PM)
his

pete46 (Feb 8, 2010 3:35:59 PM)
runs haven't slowed down?

westjlittle (Feb 8, 2010 3:36:00 PM)
home

pete46 (Feb 8, 2010 3:36:13 PM)
thats encouraging

Jim_VA (Feb 8, 2010 3:36:14 PM)
u6

westjlittle (Feb 8, 2010 3:36:24 PM)
slowed yes

pete46 (Feb 8, 2010 3:36:39 PM)
is that common jim?

pete46 (Feb 8, 2010 3:36:48 PM)
the diarrhea that is

Jim_VA (Feb 8, 2010 3:36:59 PM)
jim

westjlittle (Feb 8, 2010 3:37:05 PM)
no

pete46 (Feb 8, 2010 3:37:20 PM)
lucky you huh?

westjlittle (Feb 8, 2010 3:38:00 PM)
i got something nasty

westjlittle (Feb 8, 2010 3:38:23 PM)
at hospital

pete46 (Feb 8, 2010 3:38:27 PM)
but no probs with the trach

westjlittle (Feb 8, 2010 3:38:42 PM)
no

pete46 (Feb 8, 2010 3:38:52 PM)
i guess its easy to catch something there

pete46 (Feb 8, 2010 3:39:06 PM)
how is your breathing now?

Jim_VA (Feb 8, 2010 3:39:12 PM)
i have that problem

westjlittle (Feb 8, 2010 3:39:40 PM)
ltv 1000 vent delivered tomorrow

pete46 (Feb 8, 2010 3:40:30 PM)
so not vented yet? still on bipap?

westjlittle (Feb 8, 2010 3:41:46 PM)
breathing with vent I had trouble even initiating breath

pete46 (Feb 8, 2010 3:42:13 PM)
wow

westjlittle (Feb 8, 2010 3:42:52 PM)
It was time

pete46 (Feb 8, 2010 3:43:20 PM)
i saw on plm that your fvc was 5, so i guess it was

Jim_VA (Feb 8, 2010 3:44:10 PM)
jim are they using a single use catheters to suction you

westjlittle (Feb 8, 2010 3:44:27 PM)
no

westjlittle (Feb 8, 2010 3:45:29 PM)
i have it on all the time

pete46 (Feb 8, 2010 3:46:17 PM)
and this itv 1000 ?

westjlittle (Feb 8, 2010 3:47:03 PM)
that is the vent machine

pete46 (Feb 8, 2010 3:47:18 PM)
oh

Jim_VA (Feb 8, 2010 3:47:29 PM)
you can hook the cough assist to the side port

westjlittle (Feb 8, 2010 3:47:43 PM)
ok

westjlittle (Feb 8, 2010 3:48:21 PM)
is that what yu have?

Jim_VA (Feb 8, 2010 3:48:47 PM)
where the vent goes

Jim_VA (Feb 8, 2010 3:50:17 PM)
yes has a white button

pete46 (Feb 8, 2010 3:53:25 PM)
so you must be a bit sick of geing stuck in the hospital by now

pete46 (Feb 8, 2010 3:53:35 PM)
is it far from your home?

westjlittle (Feb 8, 2010 3:53:59 PM)
I missed the first half of the game hospital cable cut off

pete46 (Feb 8, 2010 3:54:45 PM)
too bad although the second half was exciting wasnt it?

westjlittle (Feb 8, 2010 3:55:45 PM)
I ASSUME THATWAS RHETORICAL1

westjlittle (Feb 8, 2010 3:56:11 PM)
15 minutes

westjlittle (Feb 8, 2010 3:56:33 PM)
good game

pete46 (Feb 8, 2010 3:57:07 PM)
unless your a colts fan, i liked it though

pete46 (Feb 8, 2010 3:57:22 PM)
did you ever get to the texas alabama game?

westjlittle (Feb 8, 2010 3:57:36 PM)
yes

pete46 (Feb 8, 2010 3:57:48 PM)
and jay leno?

westjlittle (Feb 8, 2010 3:57:53 PM)
and leno

pete46 (Feb 8, 2010 3:58:47 PM)
good time? although texas took it on the chin

westjlittle (Feb 8, 2010 3:58:55 PM)
you could see me on leno

pete46 (Feb 8, 2010 3:59:29 PM)
what week was it maybe its still showing on nbc.com

CRIS (Feb 8, 2010 4:00:07 PM)
(This user has entered Living with ALS)

westjlittle (Feb 8, 2010 4:00:22 PM)
huh? AL almost lost to a QB that hadnever playe

CRIS (Feb 8, 2010 4:00:54 PM)
hi fellas....talking football?

pete46 (Feb 8, 2010 4:01:00 PM)
very true, i was rooting for texas

westjlittle (Feb 8, 2010 4:01:03 PM)
jan 6

Jim_VA (Feb 8, 2010 4:01:15 PM)
1000 is compact top of the LTV line

pete46 (Feb 8, 2010 4:01:16 PM)
yup chris among other things

CRIS (Feb 8, 2010 4:01:31 PM)
are girls allowed....lol

pete46 (Feb 8, 2010 4:01:44 PM)
oh its you cris

pete46 (Feb 8, 2010 4:01:50 PM)
of course youre allowed

Jim_VA (Feb 8, 2010 4:02:20 PM)
hi cris

CRIS (Feb 8, 2010 4:02:22 PM)
you still think I am a fella

CRIS (Feb 8, 2010 4:02:52 PM)
hi jim...how are you feeling

Jim_VA (Feb 8, 2010 4:03:09 PM)
lol\

pete46 (Feb 8, 2010 4:03:16 PM)
i dont have my glasses on

Jim_VA (Feb 8, 2010 4:03:37 PM)
great ty

westjlittle (Feb 8, 2010 4:04:05 PM)
better

CRIS (Feb 8, 2010 4:04:18 PM)
where are you from, west?

pete46 (Feb 8, 2010 4:04:30 PM)
dinner time be back in about 20 minutes

CRIS (Feb 8, 2010 4:04:44 PM)
ok pete...hb

westjlittle (Feb 8, 2010 4:04:48 PM)
denver

Jim_VA (Feb 8, 2010 4:05:00 PM)
k

CRIS (Feb 8, 2010 4:05:02 PM)
how is the weather there?

westjlittle (Feb 8, 2010 4:05:16 PM)
snow

CRIS (Feb 8, 2010 4:05:45 PM)
oh dear....we had rain yesterday, but cleared up today....California here

westjlittle (Feb 8, 2010 4:08:11 PM)
I'm in hospital just got vent

CRIS (Feb 8, 2010 4:08:56 PM)
are you doing OK?

Jim_VA (Feb 8, 2010 4:09:03 PM)
jim is your cough assist at the hospital

westjlittle (Feb 8, 2010 4:10:39 PM)
i am fine but got nasty intestinal bug during st

westjlittle (Feb 8, 2010 4:11:06 PM)
no cough mach

CRIS (Feb 8, 2010 4:12:39 PM)
how long will you be in hospital? those intestinal bugs can really be hectic. are you over it now?

westjlittle (Feb 8, 2010 4:12:42 PM)
i have had diareaha for 16 days

CRIS (Feb 8, 2010 4:13:23 PM)
oh my gosh...not good

westjlittle (Feb 8, 2010 4:13:24 PM)
till Friday, no

CRIS (Feb 8, 2010 4:13:55 PM)
what if you are not over it?

westjlittle (Feb 8, 2010 4:14:25 PM)
??

Jim_VA (Feb 8, 2010 4:14:25 PM)
wow

CRIS (Feb 8, 2010 4:14:53 PM)
what if you are not over the bug...will they send you home?

westjlittle (Feb 8, 2010 4:15:08 PM)
lost 10 lbs

westjlittle (Feb 8, 2010 4:16:03 PM)
i think so it is almost gone

CRIS (Feb 8, 2010 4:17:20 PM)
thats good....brb

Jim_VA (Feb 8, 2010 4:17:33 PM)
probably fluid

westjlittle (Feb 8, 2010 4:18:47 PM)
I only had 2 episodes yesterday... at the worst it was every 2 hours'

westjlittle (Feb 8, 2010 4:20:24 PM)
worst thing i hae ever had

westjlittle (Feb 8, 2010 4:25:07 PM)
cris are you pals

pete46 (Feb 8, 2010 4:25:27 PM)
back

westjlittle (Feb 8, 2010 4:27:23 PM)
what was dinner

pete46 (Feb 8, 2010 4:27:57 PM)
crab cakes, homemade veg soup, brownies

westjlittle (Feb 8, 2010 4:28:13 PM)
im having blue can

pete46 (Feb 8, 2010 4:28:20 PM)
a cold weather meal

pete46 (Feb 8, 2010 4:28:23 PM)
lol

westjlittle (Feb 8, 2010 4:29:41 PM)
yum

pete46 (Feb 8, 2010 4:30:20 PM)
i can still eat everything although appetite is dwaining

pete46 (Feb 8, 2010 4:30:47 PM)
probably eat half as much as i did last year at this time, although i was a glutton then. :)

CRIS (Feb 8, 2010 4:31:18 PM)
hi all...back

pete46 (Feb 8, 2010 4:31:26 PM)
wb cris

westjlittle (Feb 8, 2010 4:31:36 PM)
hard to chew? swallow?

pete46 (Feb 8, 2010 4:31:44 PM)
not at all

westjlittle (Feb 8, 2010 4:32:06 PM)
good

pete46 (Feb 8, 2010 4:32:19 PM)
yes while it lasts

CRIS (Feb 8, 2010 4:32:32 PM)
have you lost weight, pete?

pete46 (Feb 8, 2010 4:32:58 PM)
fvc has dropped some and upper body strength is lessening

westjlittle (Feb 8, 2010 4:33:25 PM)
I did my FRS on PLM and got 1

pete46 (Feb 8, 2010 4:33:47 PM)
i am sure i have cris, hacent been weighed for at least three months and then ti wasn;t that accurate

pete46 (Feb 8, 2010 4:34:01 PM)
1 ?

pete46 (Feb 8, 2010 4:34:37 PM)
but you still type dont you?

westjlittle (Feb 8, 2010 4:34:37 PM)
1 out of 40

westjlittle (Feb 8, 2010 4:34:46 PM)
no

pete46 (Feb 8, 2010 4:35:12 PM)
no more typing?

westjlittle (Feb 8, 2010 4:35:50 PM)
dasher and on screen KB

CRIS (Feb 8, 2010 4:36:00 PM)
is there someone to take care of you when you go home?

westjlittle (Feb 8, 2010 4:36:14 PM)
yes

CRIS (Feb 8, 2010 4:36:25 PM)
I am glad

westjlittle (Feb 8, 2010 4:37:29 PM)
family is in town and hired

westjlittle (Feb 8, 2010 4:39:34 PM)
i stillwork a software engnineer

pete46 (Feb 8, 2010 4:40:20 PM)
are you working from home jim?

CRIS (Feb 8, 2010 4:40:27 PM)
wonderful....

Jim_VA (Feb 8, 2010 4:40:40 PM)
i found my paper on cough assist it isn't much but i will send it

CRIS (Feb 8, 2010 4:41:24 PM)
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westjlittle (Feb 8, 2010 4:41:26 PM)
cris do you hae ALS?

pete46 (Feb 8, 2010 4:43:57 PM)
did i tell you jim i'm trying to move to the als residence in chelsea ma?

pete46 (Feb 8, 2010 4:44:09 PM)
the one being built

westjlittle (Feb 8, 2010 4:45:32 PM)
if TX hadn't done that bonehead shuffepass we oldhave won

westjlittle (Feb 8, 2010 4:45:42 PM)
yes

westjlittle (Feb 8, 2010 4:46:19 PM)
are you in?

pete46 (Feb 8, 2010 4:46:21 PM)
if mcCoy hadnt got hurt

pete46 (Feb 8, 2010 4:46:40 PM)
if i get masshealth approval i am

westjlittle (Feb 8, 2010 4:47:00 PM)
good

Jim_VA (Feb 8, 2010 4:47:29 PM)
i think she has LGMD jim

westjlittle (Feb 8, 2010 4:47:43 PM)
ok

pete46 (Feb 8, 2010 4:47:50 PM)
yes she does

westjlittle (Feb 8, 2010 4:49:43 PM)
i will say they won fair squre

pete46 (Feb 8, 2010 4:50:05 PM)
a lot of ifs though

Jim_VA (Feb 8, 2010 4:51:23 PM)
i will sending you some papers

westjlittle (Feb 8, 2010 4:51:36 PM)
ok

Jim_VA (Feb 8, 2010 4:54:13 PM)
you can use or trash

pete46 (Feb 8, 2010 4:57:00 PM)
any new meds because of trach jim?

westjlittle (Feb 8, 2010 4:57:18 PM)
no

westjlittle (Feb 8, 2010 4:57:56 PM)
its just a hole

Jim_VA (Feb 8, 2010 5:00:13 PM)
when do they do trach care

westjlittle (Feb 8, 2010 5:06:07 PM)
tommorrow

westjlittle (Feb 8, 2010 5:06:34 PM)
and all wee

westjlittle (Feb 8, 2010 5:06:52 PM)
week

Jim_VA (Feb 8, 2010 5:07:38 PM)
stoma

westjlittle (Feb 8, 2010 5:08:20 PM)
they have class here

Jim_VA (Feb 8, 2010 5:08:40 PM)
the AM

westjlittle (Feb 8, 2010 5:10:50 PM)
i need to change position so no computer, later

pete46 (Feb 8, 2010 5:11:10 PM)
ok

westjlittle (Feb 8, 2010 5:11:29 PM)
bye

westjlittle (Feb 8, 2010 5:11:39 PM)
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pete46 (Feb 8, 2010 5:11:56 PM)
it was nice hearing from jim wasnt it

Jim_VA (Feb 8, 2010 5:16:04 PM)
yes it was

pete46 (Feb 8, 2010 5:17:28 PM)
jim i am going, will talk tonight if you are on chatline

Jim_VA (Feb 8, 2010 5:17:58 PM)
yes

pete46 (Feb 8, 2010 5:18:06 PM)
bye

pete46 (Feb 8, 2010 5:18:08 PM)
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Jim_VA (Feb 8, 2010 5:18:21 PM)
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