Living with ALS

ChatMaster (Nov 26, 2008 4:04:19 PM)
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Jim_VA (Nov 26, 2008 5:58:55 PM)
(This user has entered Living with ALS)

db273 (Nov 26, 2008 5:59:17 PM)
(This user has entered Living with ALS)

Jim_VA (Nov 26, 2008 6:00:16 PM)
Hi Dick

db273 (Nov 26, 2008 6:00:18 PM)
hi jim

db273 (Nov 26, 2008 6:00:33 PM)
rusty getting in

Jim_VA (Nov 26, 2008 6:01:02 PM)
how are you tonight

db273 (Nov 26, 2008 6:01:13 PM)
i am good and you

db273 (Nov 26, 2008 6:02:44 PM)
test

Jim_VA (Nov 26, 2008 6:04:34 PM)
I am fine ty

Jim_VA (Nov 26, 2008 6:05:13 PM)
I had to suction

db273 (Nov 26, 2008 6:05:35 PM)
ok thought i lost it

Jim_VA (Nov 26, 2008 6:06:29 PM)
what did you think of that plane

db273 (Nov 26, 2008 6:06:40 PM)
loved it

db273 (Nov 26, 2008 6:07:08 PM)
the train thing i did not do though would make me too sad

Jim_VA (Nov 26, 2008 6:07:46 PM)
it is awesome

Jim_VA (Nov 26, 2008 6:08:09 PM)
yes

db273 (Nov 26, 2008 6:09:19 PM)
now i can't fly that plane but did not bother me cause on my best day could not fly it but the train i did ride a lot

Jim_VA (Nov 26, 2008 6:10:06 PM)
Is tne Mavericks guy buying the cubs

db273 (Nov 26, 2008 6:10:37 PM)
we will see he has a small problem right now with sec

Jim_VA (Nov 26, 2008 6:11:04 PM)
so did I

db273 (Nov 26, 2008 6:11:13 PM)
lol bummer

Jim_VA (Nov 26, 2008 6:12:13 PM)
he will want a winner

db273 (Nov 26, 2008 6:12:25 PM)
we all do

db273 (Nov 26, 2008 6:13:11 PM)
got your arm thing all fixed yet

Jim_VA (Nov 26, 2008 6:14:13 PM)
it has been a while

Jim_VA (Nov 26, 2008 6:15:09 PM)
modified again today

db273 (Nov 26, 2008 6:15:28 PM)
i got a new computer and saw yesterday it came down 250 won't tell pat

db273 (Nov 26, 2008 6:15:50 PM)
well keeping you busy then refining

Jim_VA (Nov 26, 2008 6:17:14 PM)
nice

Jim_VA (Nov 26, 2008 6:17:44 PM)
what did you get

db273 (Nov 26, 2008 6:18:22 PM)
i got a all in one 22 inch lcd

Jim_VA (Nov 26, 2008 6:19:34 PM)
yes andy will put them on tomorrow

db273 (Nov 26, 2008 6:19:52 PM)
good hope it works real good

Jim_VA (Nov 26, 2008 6:20:04 PM)
very nice

Jim_VA (Nov 26, 2008 6:20:28 PM)
me too lol

db273 (Nov 26, 2008 6:20:38 PM)
i bet

Jim_VA (Nov 26, 2008 6:21:36 PM)
we are going to Florida Friday

db273 (Nov 26, 2008 6:21:52 PM)
neat enjoy and enjoy

db273 (Nov 26, 2008 6:22:19 PM)
i think pat ny has left all ready

Jim_VA (Nov 26, 2008 6:23:05 PM)
ty .lol,

db273 (Nov 26, 2008 6:23:40 PM)
would be nice to go for sure

Jim_VA (Nov 26, 2008 6:23:51 PM)
It snowed here

db273 (Nov 26, 2008 6:24:07 PM)
not here yet 57 tomorrow

Jim_VA (Nov 26, 2008 6:25:11 PM)
was in the mid 20's last week

db273 (Nov 26, 2008 6:25:38 PM)
oh oh too cold for me to go out would be in chair covered by blankets

Jim_VA (Nov 26, 2008 6:26:18 PM)
it is warmer now

db273 (Nov 26, 2008 6:26:29 PM)
great

db273 (Nov 26, 2008 6:26:56 PM)
went to dr and got a bipap machine if ins pays for it

Jim_VA (Nov 26, 2008 6:27:41 PM)
I do the blankets too

db273 (Nov 26, 2008 6:28:04 PM)
been wearing my hunting socks for over a month now

Jim_VA (Nov 26, 2008 6:28:24 PM)
how do you like it

db273 (Nov 26, 2008 6:29:09 PM)
the bipap haven't got it yet i was stubborn and skipped some steps he is trying too push it through

Jim_VA (Nov 26, 2008 6:29:39 PM)
I always put mine on

Jim_VA (Nov 26, 2008 6:30:00 PM)
ah

db273 (Nov 26, 2008 6:30:14 PM)
getting used too the mask will take some time and courage on my part scares me too death

Jim_VA (Nov 26, 2008 6:32:18 PM)
talk to Kurt

db273 (Nov 26, 2008 6:32:54 PM)
tell my brain that is the problem she put on that mask and i went bonkers

Jim_VA (Nov 26, 2008 6:33:14 PM)
he has plenty of experience

Jim_VA (Nov 26, 2008 6:33:36 PM)
lol

db273 (Nov 26, 2008 6:33:37 PM)
yes he does he has it i think 24/7

Jim_VA (Nov 26, 2008 6:34:44 PM)
yes since 04

db273 (Nov 26, 2008 6:36:08 PM)
long time they said i had sleep apnea and wanted a cpap but als needs a bipap so said that and dr said medicare wants cpap first i said no way and said he would try and push it through and an auto matic one that adjusted on its own

Jim_VA (Nov 26, 2008 6:36:34 PM)
I don't think that he uses a mask

db273 (Nov 26, 2008 6:36:56 PM)
thught he did saw him on you tube but what do i know

db273 (Nov 26, 2008 6:37:36 PM)
nose mask cause he talks too merab

Jim_VA (Nov 26, 2008 6:38:21 PM)
I think you are right about cpap

db273 (Nov 26, 2008 6:38:40 PM)
yes need the exhaust part for als

db273 (Nov 26, 2008 6:39:33 PM)
i have heard if you get cpap then have to wait for them to get you switched over too bipap and they balk some

Jim_VA (Nov 26, 2008 6:40:02 PM)
yes he calls them nose pillows

db273 (Nov 26, 2008 6:40:27 PM)
ok got it i might do them and mouth mask too same mask

db273 (Nov 26, 2008 6:40:49 PM)
i am a mouth breather some

Jim_VA (Nov 26, 2008 6:41:18 PM)
then they would crap over a vent

Jim_VA (Nov 26, 2008 6:41:39 PM)
ah

db273 (Nov 26, 2008 6:42:09 PM)
probably who knows they change their minds daily

db273 (Nov 26, 2008 6:42:48 PM)
or does a mouth breather have problems with a vent

Jim_VA (Nov 26, 2008 6:42:50 PM)
doctors just don't know

db273 (Nov 26, 2008 6:43:36 PM)
you are right there

Jim_VA (Nov 26, 2008 6:43:55 PM)
Not with the cuff up

db273 (Nov 26, 2008 6:44:38 PM)
ok i will remember that

Jim_VA (Nov 26, 2008 6:46:32 PM)
my group has 5 ALS patients now

db273 (Nov 26, 2008 6:46:48 PM)
sad jim

db273 (Nov 26, 2008 6:47:37 PM)
i pray they last a long long time

Jim_VA (Nov 26, 2008 6:47:48 PM)
yes it is

db273 (Nov 26, 2008 6:48:22 PM)
have you heard from laura from ny lately

Jim_VA (Nov 26, 2008 6:50:15 PM)
at least they have experience with it

db273 (Nov 26, 2008 6:50:24 PM)
good

Jim_VA (Nov 26, 2008 6:51:01 PM)
not a word

db273 (Nov 26, 2008 6:51:08 PM)
ok wondered

Jim_VA (Nov 26, 2008 6:51:01 PM)
I would say 5 months

db273 (Nov 26, 2008 6:51:15 PM)
ok thanks

Jim_VA (Nov 26, 2008 6:51:55 PM)
how about ginger

db273 (Nov 26, 2008 6:52:12 PM)
been since july

Jim_VA (Nov 26, 2008 6:53:03 PM)
ah she is moving on

db273 (Nov 26, 2008 6:53:29 PM)
i think so and she deserves that

Jim_VA (Nov 26, 2008 6:54:00 PM)
some do and some don't

db273 (Nov 26, 2008 6:54:16 PM)
i sent julie and email and she didn't answer it

Jim_VA (Nov 26, 2008 6:56:05 PM)
my mom was a widow for 32 years

db273 (Nov 26, 2008 6:56:29 PM)
my dad died in 82

db273 (Nov 26, 2008 6:56:50 PM)
tv time jim so you take care

Jim_VA (Nov 26, 2008 6:57:09 PM)
she does not check her e-mail

db273 (Nov 26, 2008 6:57:21 PM)
ok

Jim_VA (Nov 26, 2008 6:57:27 PM)
take care

db273 (Nov 26, 2008 6:57:30 PM)
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PaRay (Nov 26, 2008 7:06:17 PM)
(This user has entered Living with ALS)

PaRay (Nov 26, 2008 7:06:27 PM)
(This user has moved to Myotonic Chat Group)

momma (Nov 26, 2008 8:08:16 PM)
(This user has entered Living with ALS)

momma (Nov 26, 2008 8:08:34 PM)
hi jim all alone too?

Jim_VA (Nov 26, 2008 8:08:55 PM)
Yes

momma (Nov 26, 2008 8:08:56 PM)
must all be busy cooking turkey

momma (Nov 26, 2008 8:09:12 PM)
how are you ?

Jim_VA (Nov 26, 2008 8:09:57 PM)
how are you tonight I am fine ty

momma (Nov 26, 2008 8:10:14 PM)
doing good

momma (Nov 26, 2008 8:10:40 PM)
having big gahtering tommrow?

Jim_VA (Nov 26, 2008 8:11:09 PM)
I had 1 person

momma (Nov 26, 2008 8:11:20 PM)
oh i see

Jim_VA (Nov 26, 2008 8:11:49 PM)
yes tomorrow

Jim_VA (Nov 26, 2008 8:12:28 PM)
leaving for Florida Friday

momma (Nov 26, 2008 8:12:44 PM)
lucky you

momma (Nov 26, 2008 8:13:41 PM)
for the winter ?

Jim_VA (Nov 26, 2008 8:13:47 PM)
lol I don't like the trip'

momma (Nov 26, 2008 8:14:22 PM)
yea i cant imagine if we went with all of my son equitment

Jim_VA (Nov 26, 2008 8:14:55 PM)
yes until april

momma (Nov 26, 2008 8:15:21 PM)
so do you have dr in florida thats what i would worry about

Jim_VA (Nov 26, 2008 8:16:42 PM)
yes Wabi Wabi lol

momma (Nov 26, 2008 8:17:17 PM)
waibi wabi ?

Jim_VA (Nov 26, 2008 8:17:59 PM)
that is his name

momma (Nov 26, 2008 8:18:10 PM)
oh lol

momma (Nov 26, 2008 8:18:28 PM)
must be indian

Jim_VA (Nov 26, 2008 8:19:09 PM)
pulmonologist and internist

momma (Nov 26, 2008 8:19:21 PM)
oh i see

Jim_VA (Nov 26, 2008 8:19:55 PM)
something around India

momma (Nov 26, 2008 8:20:28 PM)
yea my sons cardiologist is to but a good doctor

Jim_VA (Nov 26, 2008 8:21:54 PM)
they are having trouble in India

momma (Nov 26, 2008 8:22:15 PM)
yea i see that on the evening news how horrible

Jim_VA (Nov 26, 2008 8:23:36 PM)
I stick with a pulmonologist

momma (Nov 26, 2008 8:23:51 PM)
yea

Jim_VA (Nov 26, 2008 8:24:48 PM)
yes awful

Jim_VA (Nov 26, 2008 8:26:53 PM)
what I don't need is a know it all doctor

momma (Nov 26, 2008 8:27:18 PM)
oh

Jim_VA (Nov 26, 2008 8:28:14 PM)
my doctor advises me

momma (Nov 26, 2008 8:28:26 PM)
yea

Jim_VA (Nov 26, 2008 8:29:43 PM)
even in the hospital they ask what we do

momma (Nov 26, 2008 8:30:18 PM)
yea we do most of my sons care at hospital

momma (Nov 26, 2008 8:31:06 PM)
i dont leave his side i dont trust them

Jim_VA (Nov 26, 2008 8:31:17 PM)
we have been at this so long

momma (Nov 26, 2008 8:31:34 PM)
yea me too

Jim_VA (Nov 26, 2008 8:31:53 PM)
best not to

momma (Nov 26, 2008 8:32:02 PM)
yyep

Jim_VA (Nov 26, 2008 8:34:11 PM)
I have only been to the hospital twice in 7 1/2 years on the vent

momma (Nov 26, 2008 8:34:24 PM)
wow thats great

Jim_VA (Nov 26, 2008 8:34:59 PM)
never had pneumonia

momma (Nov 26, 2008 8:35:52 PM)
my son uses niv for 2 yrs and not breathing issues just stomach and it been a yr sence he was in hospital he never had pneumonia either

Jim_VA (Nov 26, 2008 8:36:10 PM)
that is unusual

momma (Nov 26, 2008 8:36:31 PM)
yea

Jim_VA (Nov 26, 2008 8:36:35 PM)
great

Jim_VA (Nov 26, 2008 8:39:17 PM)
I know people on vents that have had it 8 or 9 times

momma (Nov 26, 2008 8:44:48 PM)
wow

Jim_VA (Nov 26, 2008 8:45:27 PM)
terrible

momma (Nov 26, 2008 8:45:37 PM)
yea id say

Jim_VA (Nov 26, 2008 8:47:10 PM)
one says every 3 months

momma (Nov 26, 2008 8:47:26 PM)
wow that is a lot

Jim_VA (Nov 26, 2008 8:48:42 PM)
what time does your chat end

momma (Nov 26, 2008 8:48:51 PM)
11

momma (Nov 26, 2008 8:49:00 PM)
i mean 10

Jim_VA (Nov 26, 2008 8:50:03 PM)
your in PA?

momma (Nov 26, 2008 8:50:08 PM)
well have agreat thanksgiving

momma (Nov 26, 2008 8:50:18 PM)
no ohio

Jim_VA (Nov 26, 2008 8:50:42 PM)
ty you too

momma (Nov 26, 2008 8:51:06 PM)
im gonna go mabey i stop in again bye for now

momma (Nov 26, 2008 8:51:31 PM)
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Jim_VA (Nov 26, 2008 8:51:31 PM)
bye

Jim_VA (Nov 26, 2008 8:51:59 PM)
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