Living with ALS
db273 (Dec 27, 2006 5:51:49 PM)
db273 (Dec 27, 2006 5:52:19 PM)
hi
db273 (Dec 27, 2006 6:00:09 PM)
still here
db273 (Dec 27, 2006 6:10:05 PM)
still
db273 (Dec 27, 2006 6:20:15 PM)
here
db273 (Dec 27, 2006 6:30:12 PM)
maybe
pigiron308 (Dec 27, 2006 6:32:06 PM)
(This user has entered Living with ALS)
pigiron308 (Dec 27, 2006 6:32:25 PM)
hi Dick
db273 (Dec 27, 2006 6:33:38 PM)
hi jim
db273 (Dec 27, 2006 6:34:08 PM)
how are you tonight
pigiron308 (Dec 27, 2006 6:34:12 PM)
How are you?
db273 (Dec 27, 2006 6:34:21 PM)
i am good
pigiron308 (Dec 27, 2006 6:34:42 PM)
fine here
db273 (Dec 27, 2006 6:34:47 PM)
great
pigiron308 (Dec 27, 2006 6:35:17 PM)
have you seen Bill
db273 (Dec 27, 2006 6:35:20 PM)
jim i see the adovacy is in may at dc have you ever been to that
pigiron308 (Dec 27, 2006 6:35:41 PM)
no
db273 (Dec 27, 2006 6:35:43 PM)
he called me yesterday on his cell phone
db273 (Dec 27, 2006 6:36:15 PM)
he lost his ss aplication
db273 (Dec 27, 2006 6:36:35 PM)
i meant avareness days
pigiron308 (Dec 27, 2006 6:36:50 PM)
ah told me he was going to be here tonight
db273 (Dec 27, 2006 6:36:59 PM)
stil early
db273 (Dec 27, 2006 6:37:22 PM)
yes he has been getting on a bunch more lately
db273 (Dec 27, 2006 6:38:07 PM)
he was here for almost two hours last week
pigiron308 (Dec 27, 2006 6:38:16 PM)
ah
db273 (Dec 27, 2006 6:40:04 PM)
hoping a few more come this week for a change
pigiron308 (Dec 27, 2006 6:40:40 PM)
yes
db273 (Dec 27, 2006 6:41:04 PM)
they should have time tonight all wore out from christmass
pigiron308 (Dec 27, 2006 6:41:22 PM)
just sent you an e-mail
db273 (Dec 27, 2006 6:41:29 PM)
ok good
pigiron308 (Dec 27, 2006 6:42:00 PM)
check it out
db273 (Dec 27, 2006 6:42:17 PM)
kurt sent me that one i would of been a coward too
pigiron308 (Dec 27, 2006 6:42:33 PM)
ah
pigiron308 (Dec 27, 2006 6:42:46 PM)
funny
db273 (Dec 27, 2006 6:42:53 PM)
oh i got a als newsletter from your area and saw your picture
db273 (Dec 27, 2006 6:43:26 PM)
when that gal went around taking our names i must of got put on the mailing list
pigiron308 (Dec 27, 2006 6:43:36 PM)
I haven't seen that lol
db273 (Dec 27, 2006 6:43:46 PM)
i was real surprised and felt good
db273 (Dec 27, 2006 6:43:57 PM)
yes carrie
pigiron308 (Dec 27, 2006 6:43:58 PM)
ah
db273 (Dec 27, 2006 6:44:29 PM)
daughter chloe is holding up o'toole's banner too
pigiron308 (Dec 27, 2006 6:44:40 PM)
Have you talked to Ginger?
db273 (Dec 27, 2006 6:45:11 PM)
was real nice to read it wonder if they had a write up for maria's fund raisier
db273 (Dec 27, 2006 6:45:32 PM)
yes
pigiron308 (Dec 27, 2006 6:45:46 PM)
can you send me a copy
db273 (Dec 27, 2006 6:46:14 PM)
sure i will mail it too you email me your add
pigiron308 (Dec 27, 2006 6:46:30 PM)
how is she doing?
db273 (Dec 27, 2006 6:47:07 PM)
good as far as i know she is working hard and training for a 5k run on new years day
pigiron308 (Dec 27, 2006 6:48:27 PM)
yikes Ginger?
db273 (Dec 27, 2006 6:48:34 PM)
yes
pigiron308 (Dec 27, 2006 6:48:46 PM)
wow
db273 (Dec 27, 2006 6:49:02 PM)
i am proud of her
pigiron308 (Dec 27, 2006 6:49:47 PM)
she is quite a Lady
db273 (Dec 27, 2006 6:49:54 PM)
yes she is
pigiron308 (Dec 27, 2006 6:51:55 PM)
Just got a note from Bobby
db273 (Dec 27, 2006 6:52:03 PM)
ok
pigiron308 (Dec 27, 2006 6:53:12 PM)
He likes my picture
db273 (Dec 27, 2006 6:53:27 PM)
good so he saw it too
pigiron308 (Dec 27, 2006 6:54:17 PM)
no the one of me in bed
db273 (Dec 27, 2006 6:54:28 PM)
oh that one it is nice too
pigiron308 (Dec 27, 2006 6:55:13 PM)
He sent me a questionnaire about being on a vent
db273 (Dec 27, 2006 6:55:48 PM)
yes i saw his questionare and thought it was too long
db273 (Dec 27, 2006 6:56:33 PM)
half of it i could not remember when or why or what was it
pigiron308 (Dec 27, 2006 6:56:34 PM)
I think it is for PLM - don't know if they will use it or not
db273 (Dec 27, 2006 6:56:47 PM)
i am glad you are doing it though
pigiron308 (Dec 27, 2006 6:57:28 PM)
I sent them a plenty lol
db273 (Dec 27, 2006 6:57:52 PM)
super jim
pigiron308 (Dec 27, 2006 6:58:27 PM)
that picture I put on the bottom
db273 (Dec 27, 2006 6:58:46 PM)
nice touch
pigiron308 (Dec 27, 2006 6:59:04 PM)
lol
db273 (Dec 27, 2006 6:59:34 PM)
an exclamation point
pigiron308 (Dec 27, 2006 7:00:01 PM)
I figured that I needed to advertise a little lol
db273 (Dec 27, 2006 7:00:13 PM)
yes hoot your horn
db273 (Dec 27, 2006 7:00:55 PM)
toot
pigiron308 (Dec 27, 2006 7:01:27 PM)
Hooter doesn't work well
db273 (Dec 27, 2006 7:01:36 PM)
or honk
db273 (Dec 27, 2006 7:01:52 PM)
lol
pigiron308 (Dec 27, 2006 7:01:59 PM)
lol
pigiron308 (Dec 27, 2006 7:03:05 PM)
I was checking PLM
db273 (Dec 27, 2006 7:03:20 PM)
i do not go there often
pigiron308 (Dec 27, 2006 7:04:23 PM)
that may have been more than they can handle
db273 (Dec 27, 2006 7:04:48 PM)
well they can post in two parts
pigiron308 (Dec 27, 2006 7:05:47 PM)
I don't go there much either
db273 (Dec 27, 2006 7:06:12 PM)
my thing is i forget i am sick and just do fun things mostly
pigiron308 (Dec 27, 2006 7:07:31 PM)
I go there and read the threads
db273 (Dec 27, 2006 7:08:23 PM)
i did scroll down some names and see where they were from
pigiron308 (Dec 27, 2006 7:08:59 PM)
that is interesting
db273 (Dec 27, 2006 7:09:01 PM)
and there ages
pigiron308 (Dec 27, 2006 7:09:15 PM)
yes
db273 (Dec 27, 2006 7:09:36 PM)
i think they have 2500 names so will take a while
pigiron308 (Dec 27, 2006 7:10:37 PM)
that is living-with-als
db273 (Dec 27, 2006 7:10:59 PM)
no plm i thought
pigiron308 (Dec 27, 2006 7:11:35 PM)
plm has around 700 I think
db273 (Dec 27, 2006 7:11:44 PM)
now i will have to go back and check
db273 (Dec 27, 2006 7:11:56 PM)
still a lot to go through
pigiron308 (Dec 27, 2006 7:12:22 PM)
do you go to living-with-als
db273 (Dec 27, 2006 7:12:53 PM)
no just get there emails which i read about 1 in 10
pigiron308 (Dec 27, 2006 7:13:16 PM)
lol same here
db273 (Dec 27, 2006 7:13:26 PM)
ashamed to say that
pigiron308 (Dec 27, 2006 7:14:36 PM)
I was sorry to hear about David
db273 (Dec 27, 2006 7:15:00 PM)
yes he is one whose vent did not signal right
pigiron308 (Dec 27, 2006 7:15:04 PM)
he was a good guy
db273 (Dec 27, 2006 7:15:24 PM)
sounds like he was i was not too familar with him
pigiron308 (Dec 27, 2006 7:15:29 PM)
no pneumonia
db273 (Dec 27, 2006 7:15:41 PM)
dave wv
pigiron308 (Dec 27, 2006 7:16:23 PM)
no David Abel in Illinois
db273 (Dec 27, 2006 7:16:37 PM)
ok did not know him
pigiron308 (Dec 27, 2006 7:18:01 PM)
He had ALS for years got terminal cancer and died of pneumonia
db273 (Dec 27, 2006 7:18:27 PM)
not a good thing all the way around to fight so long
pigiron308 (Dec 27, 2006 7:19:16 PM)
yes relatively young too
db273 (Dec 27, 2006 7:20:10 PM)
one thing in 11 years i have heard so many sad stories and feel so bad for them and their suffering drains me sometimes
db273 (Dec 27, 2006 7:20:45 PM)
i have not got old hat either about it so that makes it hard to take sometimes
pigiron308 (Dec 27, 2006 7:21:24 PM)
yes I know the feeling
db273 (Dec 27, 2006 7:22:54 PM)
christmass we were talking about my sons ex father in law who has a stroke and has brain damage among other things and his wife is in denial and i said something that hit me later about getting a day off from this once in a while which will never happen but sure do think about it
pigiron308 (Dec 27, 2006 7:24:20 PM)
yep makes you think
db273 (Dec 27, 2006 7:24:54 PM)
so she sends him to daycare 3 days a week so she gets away
pigiron308 (Dec 27, 2006 7:25:11 PM)
wow
db273 (Dec 27, 2006 7:25:58 PM)
i think some people have no sense about them do they think he wanted a stroke to punish her or make her life hard
db273 (Dec 27, 2006 7:26:20 PM)
some people it is i or me
db273 (Dec 27, 2006 7:27:04 PM)
i pray that i understand and give comfort and aid to those who need it
pigiron308 (Dec 27, 2006 7:27:12 PM)
there are all kinds
db273 (Dec 27, 2006 7:27:36 PM)
yes my soap box tonght sorry i got up tired
db273 (Dec 27, 2006 7:28:09 PM)
too much holidays
pigiron308 (Dec 27, 2006 7:28:41 PM)
I think the people in this country are the most selfish people in the world
db273 (Dec 27, 2006 7:29:05 PM)
you might be right i hope i do not find out all the selfish ones
pigiron308 (Dec 27, 2006 7:30:13 PM)
brb
db273 (Dec 27, 2006 7:30:18 PM)
ok
pigiron308 (Dec 27, 2006 7:34:40 PM)
back
db273 (Dec 27, 2006 7:35:06 PM)
ok jim i meant your street address so i can send it too you
barbg (Dec 27, 2006 7:35:33 PM)
(This user has entered Living with ALS)
db273 (Dec 27, 2006 7:35:43 PM)
hi barb
pigiron308 (Dec 27, 2006 7:35:43 PM)
have you seen
pigiron308 (Dec 27, 2006 7:35:55 PM)
Julie
db273 (Dec 27, 2006 7:36:08 PM)
a couple of weeks ago jim
db273 (Dec 27, 2006 7:36:23 PM)
how are you barb
barbg (Dec 27, 2006 7:36:46 PM)
hi all i'm ok
pigiron308 (Dec 27, 2006 7:36:48 PM)
hi barb
barbg (Dec 27, 2006 7:36:54 PM)
hi jim
db273 (Dec 27, 2006 7:37:03 PM)
good i am good here too
barbg (Dec 27, 2006 7:37:32 PM)
thats good
db273 (Dec 27, 2006 7:37:50 PM)
yes have some burn out from holidays
db273 (Dec 27, 2006 7:38:12 PM)
can't do the things i used to do
pigiron308 (Dec 27, 2006 7:38:15 PM)
fine here
barbg (Dec 27, 2006 7:38:34 PM)
i'm very down my nephew died yesterday
db273 (Dec 27, 2006 7:38:46 PM)
sorry to hear that barb
pigiron308 (Dec 27, 2006 7:39:37 PM)
sorry barb
pigiron308 (Dec 27, 2006 7:40:20 PM)
what happened
barbg (Dec 27, 2006 7:40:32 PM)
jim did you see on the news about a reservist in st. marys co. md being shot by the police in a standoff
pigiron308 (Dec 27, 2006 7:41:25 PM)
yes day or two ago
barbg (Dec 27, 2006 7:41:28 PM)
it was on all the news channells up there yesterday
barbg (Dec 27, 2006 7:41:40 PM)
that was him
db273 (Dec 27, 2006 7:41:47 PM)
sad
pigiron308 (Dec 27, 2006 7:42:04 PM)
oh me
db273 (Dec 27, 2006 7:42:21 PM)
how old was he
barbg (Dec 27, 2006 7:42:47 PM)
very all because they called him back to the war and he said he wouldn't go again . he was 29
pigiron308 (Dec 27, 2006 7:43:26 PM)
did he have the fishing business
pigiron308 (Dec 27, 2006 7:43:43 PM)
sad
barbg (Dec 27, 2006 7:44:04 PM)
just got married in august and has 2 step kids no he was in construction
db273 (Dec 27, 2006 7:44:09 PM)
i not like that war and how it is turning out our grandson came back all screwed up took him 6 months to get back too normal
pigiron308 (Dec 27, 2006 7:44:26 PM)
ah
barbg (Dec 27, 2006 7:45:16 PM)
they can still call your grandson back up till he.s serve a total of 8 yrs
barbg (Dec 27, 2006 7:45:45 PM)
how long was he in for
db273 (Dec 27, 2006 7:45:54 PM)
yes we know he is going to honduras in mar for traing we screamed and hollered when he joined did not goo
pigiron308 (Dec 27, 2006 7:45:58 PM)
wife came in the room when she heard it on the news
db273 (Dec 27, 2006 7:46:13 PM)
he is in reserve too and has 3 years in
barbg (Dec 27, 2006 7:46:35 PM)
so they can have him for another 5
db273 (Dec 27, 2006 7:46:53 PM)
yes very hard to take for us
barbg (Dec 27, 2006 7:47:19 PM)
i can't go to funeral because its to hard on me
db273 (Dec 27, 2006 7:47:22 PM)
we heard today too the 82 nd is going soon
barbg (Dec 27, 2006 7:47:35 PM)
i know
db273 (Dec 27, 2006 7:48:19 PM)
do you have a husband or good friend who could help you go so you can feel connected to his final trip
pigiron308 (Dec 27, 2006 7:48:36 PM)
My son won't get out of the reserves
barbg (Dec 27, 2006 7:49:10 PM)
i am hoping they will let his sister out of the air force since she is the only surviving kid my sister has now
db273 (Dec 27, 2006 7:49:19 PM)
i am not against the reserves but i useless action they are in now
pigiron308 (Dec 27, 2006 7:50:25 PM)
he will be in the Ford ceremony
barbg (Dec 27, 2006 7:50:37 PM)
my sister was up on the hill and heard the gun shot her and my other sister both collapsed on the ground they say
db273 (Dec 27, 2006 7:50:40 PM)
that is a honor jim to be proud of
pigiron308 (Dec 27, 2006 7:51:02 PM)
yes
db273 (Dec 27, 2006 7:51:34 PM)
i tear up any military funeral or ceremony
barbg (Dec 27, 2006 7:52:20 PM)
i tear up at the sound of taps
pigiron308 (Dec 27, 2006 7:52:45 PM)
Need to send Bush's daughters over there
db273 (Dec 27, 2006 7:53:05 PM)
yes i agree and chenny's too
redcountry (Dec 27, 2006 7:53:19 PM)
(This user has entered Living with ALS)
db273 (Dec 27, 2006 7:53:29 PM)
hey julie
barbg (Dec 27, 2006 7:53:32 PM)
as for me going up there my breathing is very bad and i can't take a chance of getting sick
db273 (Dec 27, 2006 7:53:48 PM)
ok barb
redcountry (Dec 27, 2006 7:53:49 PM)
hello everybody!!
db273 (Dec 27, 2006 7:54:00 PM)
how are you and steve doing julie
barbg (Dec 27, 2006 7:54:21 PM)
i get feeding tube on jan 29 and i see pulmonary on jan 5
redcountry (Dec 27, 2006 7:54:22 PM)
we are doing really good,
pigiron308 (Dec 27, 2006 7:54:29 PM)
hi Julie
db273 (Dec 27, 2006 7:54:33 PM)
good julie
barbg (Dec 27, 2006 7:54:39 PM)
hi julie
pigiron308 (Dec 27, 2006 7:54:44 PM)
great
db273 (Dec 27, 2006 7:54:48 PM)
sorry to hear all that is happening right now barb
redcountry (Dec 27, 2006 7:55:06 PM)
keep your weight up barb
redcountry (Dec 27, 2006 7:55:27 PM)
steve has had one since last august
barbg (Dec 27, 2006 7:55:30 PM)
we're dealing but its hard all i do is eat
pigiron308 (Dec 27, 2006 7:56:04 PM)
eat pies
redcountry (Dec 27, 2006 7:56:07 PM)
steve still enjoys food
db273 (Dec 27, 2006 7:56:10 PM)
not a bad thing for als person
redcountry (Dec 27, 2006 7:56:14 PM)
peach pies
barbg (Dec 27, 2006 7:56:31 PM)
pudding butterscotch
db273 (Dec 27, 2006 7:56:42 PM)
hey julie i got a great recipe for apple dumplings
redcountry (Dec 27, 2006 7:56:46 PM)
i love butterscotch
barbg (Dec 27, 2006 7:57:01 PM)
thats how i take my pills now
pigiron308 (Dec 27, 2006 7:57:09 PM)
yum yum
redcountry (Dec 27, 2006 7:57:10 PM)
and i have a recipe for bakery sweet rolls
db273 (Dec 27, 2006 7:57:29 PM)
i know you were sending it too me remember
redcountry (Dec 27, 2006 7:57:51 PM)
steve has been having a hard time with his pills
pigiron308 (Dec 27, 2006 7:57:54 PM)
butterscotch pies with huey
barbg (Dec 27, 2006 7:58:02 PM)
my hubby loves to cook so he 's always making something
redcountry (Dec 27, 2006 7:58:14 PM)
and marshmellow mixed in
db273 (Dec 27, 2006 7:58:21 PM)
i do too but takes a lot of my energy
pigiron308 (Dec 27, 2006 7:58:30 PM)
mmmm
redcountry (Dec 27, 2006 7:58:41 PM)
was christmas good for everybody
barbg (Dec 27, 2006 7:58:48 PM)
put them in pudding it even works for the horse pills
db273 (Dec 27, 2006 7:58:57 PM)
it was here thank you
pigiron308 (Dec 27, 2006 7:59:22 PM)
yes ty and you?
redcountry (Dec 27, 2006 7:59:23 PM)
really dick did you celebrate a different day
redcountry (Dec 27, 2006 7:59:41 PM)
we had a blast
db273 (Dec 27, 2006 7:59:51 PM)
i tried to be boss and got laughed out of town
pigiron308 (Dec 27, 2006 8:00:37 PM)
I take pills with V-8 juice
barbg (Dec 27, 2006 8:01:02 PM)
don't like that
redcountry (Dec 27, 2006 8:01:51 PM)
i can veg juice
pigiron308 (Dec 27, 2006 8:02:05 PM)
I can do 8 - 10 in one gulp
db273 (Dec 27, 2006 8:02:34 PM)
wow i have trouble with a half of aspirin
redcountry (Dec 27, 2006 8:02:57 PM)
steve's pills are very little
redcountry (Dec 27, 2006 8:03:36 PM)
jim i never got to read about augie, but a friend did tell me all about it
barbg (Dec 27, 2006 8:03:53 PM)
4 are horse pills 8 are little
db273 (Dec 27, 2006 8:03:58 PM)
he is going to be on today show tomorrow morning first hour i think
redcountry (Dec 27, 2006 8:04:23 PM)
really
db273 (Dec 27, 2006 8:04:39 PM)
yes julie i saw it in the news of als
redcountry (Dec 27, 2006 8:04:45 PM)
talking on the discoverys
pigiron308 (Dec 27, 2006 8:05:01 PM)
brb
redcountry (Dec 27, 2006 8:05:23 PM)
is that abc or nbc or cbs
db273 (Dec 27, 2006 8:05:24 PM)
i do not know but think mostly to get more interest and money for research his way
db273 (Dec 27, 2006 8:05:30 PM)
nbc
redcountry (Dec 27, 2006 8:05:44 PM)
does he have als
db273 (Dec 27, 2006 8:06:16 PM)
he is having a big shindig in sf in mar 30
db273 (Dec 27, 2006 8:06:46 PM)
yes he is about 44 and been on labor day telethon
db273 (Dec 27, 2006 8:06:46 PM)
yes he does
barbg (Dec 27, 2006 8:06:46 PM)
both of my als drs went to the thing in japan they say it was very good and there are alot of things going on all over the world in research
db273 (Dec 27, 2006 8:07:13 PM)
(This user has left DigiChat)
redcountry (Dec 27, 2006 8:07:13 PM)
the mda has been scraping for money for the study steve is in
db273 (Dec 27, 2006 8:07:16 PM)
(This user has entered Living with ALS)
db273 (Dec 27, 2006 8:07:59 PM)
i was typing and it was not coming up so got out and back in
db273 (Dec 27, 2006 8:08:09 PM)
yes he has als
redcountry (Dec 27, 2006 8:08:18 PM)
that happened to me to
redcountry (Dec 27, 2006 8:08:42 PM)
and seemed like everything froze up
db273 (Dec 27, 2006 8:08:50 PM)
i am sick of this format it does that a lot too much in fact
redcountry (Dec 27, 2006 8:09:14 PM)
is jim and barb still froze up
db273 (Dec 27, 2006 8:09:21 PM)
he is around 44 and owns a bunch of health gyms in ca
pigiron308 (Dec 27, 2006 8:09:24 PM)
Augie Nieto>
db273 (Dec 27, 2006 8:09:32 PM)
yes
barbg (Dec 27, 2006 8:09:36 PM)
i'm here
redcountry (Dec 27, 2006 8:09:45 PM)
is the mda running out of money
db273 (Dec 27, 2006 8:09:52 PM)
good barb
redcountry (Dec 27, 2006 8:10:09 PM)
are you eating again barb
redcountry (Dec 27, 2006 8:10:12 PM)
lol
db273 (Dec 27, 2006 8:10:19 PM)
i do not think so but he wants research to go faster and break some rules mda has
pigiron308 (Dec 27, 2006 8:10:38 PM)
not that I know of
barbg (Dec 27, 2006 8:10:48 PM)
no i just have a crying jag every now nad then
barbg (Dec 27, 2006 8:10:55 PM)
and
redcountry (Dec 27, 2006 8:11:06 PM)
i sorry barb,
db273 (Dec 27, 2006 8:11:48 PM)
me too there was a article about this guy in paper yesterday and his wife goes to support i go too and i could not finish it and was bawling all over the place
barbg (Dec 27, 2006 8:12:03 PM)
julie you weren't in here when i told them my nephew died yesterday
redcountry (Dec 27, 2006 8:12:08 PM)
will you have a laughing one for every cry one?
barbg (Dec 27, 2006 8:12:29 PM)
not today i wish
redcountry (Dec 27, 2006 8:12:43 PM)
oh that is awful
redcountry (Dec 27, 2006 8:12:49 PM)
im so sorry
pigiron308 (Dec 27, 2006 8:13:01 PM)
Trying to by-pass some FDA red tape also
redcountry (Dec 27, 2006 8:13:01 PM)
how old
barbg (Dec 27, 2006 8:13:14 PM)
its real hard 29
redcountry (Dec 27, 2006 8:13:38 PM)
i cant imagine how hard
redcountry (Dec 27, 2006 8:14:05 PM)
have you heard much about the drug steve is on
barbg (Dec 27, 2006 8:14:28 PM)
what is he on
redcountry (Dec 27, 2006 8:14:36 PM)
r+ppx
redcountry (Dec 27, 2006 8:15:30 PM)
I think the findings have been really good, it shows a definate slowing of progression
redcountry (Dec 27, 2006 8:16:28 PM)
and they cant up the dose, some people are on a 300 mg dose
barbg (Dec 27, 2006 8:16:36 PM)
no i was on a clinical trial of keppra for cramps and it made me sleep all the time and when i woke up i'd open my eyes and every thing would be neon green so i got off it was really scary
redcountry (Dec 27, 2006 8:16:57 PM)
and i dont know what the findings are for the people with the 300
barbg (Dec 27, 2006 8:17:15 PM)
my doc said some people can't use it
redcountry (Dec 27, 2006 8:18:09 PM)
scary
redcountry (Dec 27, 2006 8:18:47 PM)
steve has had very little side effects, but 1 year ago he was progressing very rapid,
barbg (Dec 27, 2006 8:19:03 PM)
it was you open your eyes and the walls and everything are green it was weirdddd
pigiron308 (Dec 27, 2006 8:19:07 PM)
f
redcountry (Dec 27, 2006 8:19:19 PM)
and he is still progressing but not as fast
pigiron308 (Dec 27, 2006 8:19:32 PM)
good Julie
db273 (Dec 27, 2006 8:19:42 PM)
nice julie
redcountry (Dec 27, 2006 8:19:53 PM)
i think i would want to try one of those maybe once, barb, lol
db273 (Dec 27, 2006 8:20:11 PM)
lsd
barbg (Dec 27, 2006 8:20:38 PM)
not me i fell asleep talking at the dinner table on thanksgiving
pigiron308 (Dec 27, 2006 8:20:38 PM)
hope it quits completely
db273 (Dec 27, 2006 8:21:00 PM)
right on jim
redcountry (Dec 27, 2006 8:21:02 PM)
yes
redcountry (Dec 27, 2006 8:21:22 PM)
i wish it would quit right now
pigiron308 (Dec 27, 2006 8:21:42 PM)
have you got pipap barb?
redcountry (Dec 27, 2006 8:21:45 PM)
we got a wish for christmas
barbg (Dec 27, 2006 8:21:53 PM)
out of 24 hrs i would sleep at least 18 to 20 a day
redcountry (Dec 27, 2006 8:21:55 PM)
from the radio station
db273 (Dec 27, 2006 8:22:08 PM)
tell us
redcountry (Dec 27, 2006 8:22:08 PM)
(This user has left DigiChat)
redcountry (Dec 27, 2006 8:22:15 PM)
(This user has entered Living with ALS)
db273 (Dec 27, 2006 8:22:22 PM)
nudged again
pigiron308 (Dec 27, 2006 8:22:25 PM)
yes yes
redcountry (Dec 27, 2006 8:22:27 PM)
i got interupted
redcountry (Dec 27, 2006 8:22:42 PM)
that is not good sleeping that much
pigiron308 (Dec 27, 2006 8:23:54 PM)
barb bipap?
barbg (Dec 27, 2006 8:23:57 PM)
yes i have bipap and a suction machine already and a cough assist machine has been ordered should get next week
redcountry (Dec 27, 2006 8:24:37 PM)
have you been getting really weak
pigiron308 (Dec 27, 2006 8:24:59 PM)
Has your 02 been checked
barbg (Dec 27, 2006 8:25:26 PM)
plus i am getting hospital bed and wheelchair i have a manual one now
barbg (Dec 27, 2006 8:26:54 PM)
my breathing is getting worse i don't walk very far at all i get winded i go to pulmonary next week
pigiron308 (Dec 27, 2006 8:27:04 PM)
how does the suction machine work?
redcountry (Dec 27, 2006 8:27:19 PM)
have they told you on keeping your lungs healthy
barbg (Dec 27, 2006 8:28:04 PM)
i cough up mucus and its like a dentist sustion thing and it sucks it out
pigiron308 (Dec 27, 2006 8:28:27 PM)
what was your news Julie?
redcountry (Dec 27, 2006 8:28:34 PM)
the bipap, even if you think you are breathing ok, the bipap helps to keep your lungs healthy
redcountry (Dec 27, 2006 8:29:04 PM)
you mean our wish
db273 (Dec 27, 2006 8:29:11 PM)
yes
pigiron308 (Dec 27, 2006 8:29:14 PM)
ah a yankur
redcountry (Dec 27, 2006 8:29:32 PM)
they had a contractor put new rails up on our ramp
db273 (Dec 27, 2006 8:29:42 PM)
super
pigiron308 (Dec 27, 2006 8:29:57 PM)
great
barbg (Dec 27, 2006 8:30:01 PM)
yeah it helps alot i even use it during the day i have a nose pillow for the day and a full mask for night
redcountry (Dec 27, 2006 8:30:05 PM)
and i had to be on the radio, but it is awarenes
pigiron308 (Dec 27, 2006 8:30:34 PM)
yes
barbg (Dec 27, 2006 8:30:43 PM)
thats what they called it jin
barbg (Dec 27, 2006 8:30:48 PM)
jim
redcountry (Dec 27, 2006 8:31:23 PM)
steve likes the nose one, it kind of sucks up to the nose
db273 (Dec 27, 2006 8:31:29 PM)
good girl julie the extra mile
redcountry (Dec 27, 2006 8:31:48 PM)
and it is really light weight
pigiron308 (Dec 27, 2006 8:31:50 PM)
I bit the end off of one
redcountry (Dec 27, 2006 8:32:20 PM)
how did you do that
barbg (Dec 27, 2006 8:32:41 PM)
i'm use to the face mask when i sleep
redcountry (Dec 27, 2006 8:33:03 PM)
can you use your hands and arms
barbg (Dec 27, 2006 8:33:50 PM)
yes its still only my rt leg and speach and swallowing
redcountry (Dec 27, 2006 8:34:26 PM)
you need to keep yourself strong,
pigiron308 (Dec 27, 2006 8:34:33 PM)
I have a sensitive spot in my mouth that slams it closed like a Crocodile
barbg (Dec 27, 2006 8:34:35 PM)
my left leg has started to twitch some so i know its coming
redcountry (Dec 27, 2006 8:34:45 PM)
and try not to lose to much weight
redcountry (Dec 27, 2006 8:35:29 PM)
steve uses six cans of food a day and maintains
barbg (Dec 27, 2006 8:35:40 PM)
i've gained 15 lbs since i got my dx in may
elliebedelia (Dec 27, 2006 8:36:35 PM)
(This user has entered Living with ALS)
redcountry (Dec 27, 2006 8:36:36 PM)
oh, that is awful when it happens
elliebedelia (Dec 27, 2006 8:37:10 PM)
good evening
pigiron308 (Dec 27, 2006 8:37:18 PM)
be sure they check your blood oxygen barb
redcountry (Dec 27, 2006 8:37:21 PM)
one time steve had his lower jaw, jut out
barbg (Dec 27, 2006 8:37:27 PM)
doc thinks its great i don't my clothes are tight
pigiron308 (Dec 27, 2006 8:37:44 PM)
Hi ellie
redcountry (Dec 27, 2006 8:37:47 PM)
hi ellie
barbg (Dec 27, 2006 8:37:58 PM)
hi ellie
redcountry (Dec 27, 2006 8:38:08 PM)
hey dick
db273 (Dec 27, 2006 8:38:26 PM)
yes
pigiron308 (Dec 27, 2006 8:38:50 PM)
how are you ellie
elliebedelia (Dec 27, 2006 8:38:52 PM)
i am in NH and am visiting your chat. I have myatonic muscular dystrophy
redcountry (Dec 27, 2006 8:39:08 PM)
are your apple dumplings like wrapped in a crust
redcountry (Dec 27, 2006 8:39:18 PM)
and then have a sauce
pigiron308 (Dec 27, 2006 8:39:18 PM)
welcome
db273 (Dec 27, 2006 8:39:23 PM)
yes julie
db273 (Dec 27, 2006 8:39:39 PM)
cresent roll
barbg (Dec 27, 2006 8:39:43 PM)
sounds yummy
redcountry (Dec 27, 2006 8:39:46 PM)
i will get that recipe for the rolls to you,
pigiron308 (Dec 27, 2006 8:40:08 PM)
NH is ok
db273 (Dec 27, 2006 8:40:09 PM)
yes sugar cinnamon butter
redcountry (Dec 27, 2006 8:40:10 PM)
and i am taking my pc to get cleaned up
db273 (Dec 27, 2006 8:40:21 PM)
mt doo
elliebedelia (Dec 27, 2006 8:40:28 PM)
well its 22 degrees here
barbg (Dec 27, 2006 8:40:42 PM)
to cold for me
pigiron308 (Dec 27, 2006 8:40:43 PM)
yikes
redcountry (Dec 27, 2006 8:40:48 PM)
coooold
db273 (Dec 27, 2006 8:40:56 PM)
good julie
pigiron308 (Dec 27, 2006 8:41:29 PM)
balmy Virginia here
pigiron308 (Dec 27, 2006 8:41:49 PM)
44
elliebedelia (Dec 27, 2006 8:42:18 PM)
thats nice I will eventually move further south this cold really hurts me
redcountry (Dec 27, 2006 8:42:19 PM)
nebraska weeellll that is where the seperate the men from the boys
barbg (Dec 27, 2006 8:42:28 PM)
nc/sc border on the ocean here
elliebedelia (Dec 27, 2006 8:43:07 PM)
i was in Charleston NC when my son graduated from Navy training
pigiron308 (Dec 27, 2006 8:43:08 PM)
I have been to Dover and Portsmouth
redcountry (Dec 27, 2006 8:44:01 PM)
we will have below zero with terrible wind chills and i am not a fan at all
elliebedelia (Dec 27, 2006 8:44:08 PM)
it is much better even there pigiron. I live up in the White Mountains up north
redcountry (Dec 27, 2006 8:44:34 PM)
the mountains sun is wonderful
pigiron308 (Dec 27, 2006 8:44:38 PM)
brrr
elliebedelia (Dec 27, 2006 8:44:53 PM)
yes the spring and summers here are very nice
barbg (Dec 27, 2006 8:45:01 PM)
i'm at the 21 mile marker on rt 17 between wilmington nc and myrtle beach sc i.n in nc
barbg (Dec 27, 2006 8:45:17 PM)
i'm
elliebedelia (Dec 27, 2006 8:45:30 PM)
thats sounds like a nice place on the ocean
elliebedelia (Dec 27, 2006 8:46:18 PM)
well my eyes are tired so i will sign off. have a nice week everyone
elliebedelia (Dec 27, 2006 8:46:24 PM)
(This user has left DigiChat)
db273 (Dec 27, 2006 8:46:30 PM)
bye
barbg (Dec 27, 2006 8:46:31 PM)
it is usually around 60 on a cool winter day but lots of times warmer
redcountry (Dec 27, 2006 8:46:54 PM)
oh i would love to go the the beach
redcountry (Dec 27, 2006 8:47:15 PM)
and run on the beach in my thong
db273 (Dec 27, 2006 8:47:32 PM)
ooh la la
redcountry (Dec 27, 2006 8:47:37 PM)
hehehe
pigiron308 (Dec 27, 2006 8:47:39 PM)
lol
barbg (Dec 27, 2006 8:48:02 PM)
i just go down in the car and watch the water anymore its peaceful
barbg (Dec 27, 2006 8:48:38 PM)
wish i could run period
db273 (Dec 27, 2006 8:48:49 PM)
me too
redcountry (Dec 27, 2006 8:49:05 PM)
you dont want to see me run, really
pigiron308 (Dec 27, 2006 8:49:13 PM)
I have been thinking about buying a place in Florida
db273 (Dec 27, 2006 8:49:28 PM)
ok take your word
redcountry (Dec 27, 2006 8:49:30 PM)
i would need your suction machine
barbg (Dec 27, 2006 8:50:36 PM)
my daughter has a camper 32 ft in frostproof fl its nice its by cyprus gardens
redcountry (Dec 27, 2006 8:51:02 PM)
i hope you start feeling better barb and hope to chat w/ you again,
redcountry (Dec 27, 2006 8:51:36 PM)
i need to get going guys, my kids are delivering grocerys
barbg (Dec 27, 2006 8:51:41 PM)
thanks julie i haven't been in for a while
db273 (Dec 27, 2006 8:51:50 PM)
bye julie
barbg (Dec 27, 2006 8:51:57 PM)
bye
redcountry (Dec 27, 2006 8:52:02 PM)
take it easy
pigiron308 (Dec 27, 2006 8:52:06 PM)
It can freeze there but not often
redcountry (Dec 27, 2006 8:52:12 PM)
(This user has left DigiChat)
db273 (Dec 27, 2006 8:52:14 PM)
will do
barbg (Dec 27, 2006 8:53:00 PM)
we went there in oct for a week and had a blast
pigiron308 (Dec 27, 2006 8:54:05 PM)
Why didn't they leave your nephew alone
barbg (Dec 27, 2006 8:54:19 PM)
where she is there are orange groves for miles and miles on both sides of the road
pigiron308 (Dec 27, 2006 8:54:37 PM)
oh yes
pigiron308 (Dec 27, 2006 8:55:31 PM)
I have been to Cypress Gardens
barbg (Dec 27, 2006 8:55:50 PM)
they were afraid he'd shoot himself he was threating to kill himself or any one who came near the houes
db273 (Dec 27, 2006 8:56:38 PM)
i am going bye
db273 (Dec 27, 2006 8:56:43 PM)
(This user has left DigiChat)
pigiron308 (Dec 27, 2006 8:57:18 PM)
they should have left him alone
pigiron308 (Dec 27, 2006 8:58:13 PM)
he obviously needed help
barbg (Dec 27, 2006 8:58:33 PM)
i think it was a police assisted suicide he couldn't do it so when he started to go out of the houde he pointed the gun at the police and they said he was a danger and shot him but they could of shot him somewhere besides the chest
barbg (Dec 27, 2006 9:00:18 PM)
they wouldn't let my sister or brother-in-law near to talk to him they said they were trained professionals and would talk to him
pigiron308 (Dec 27, 2006 9:00:43 PM)
yes and he would probably have gone to sleep if they would have left
barbg (Dec 27, 2006 9:01:52 PM)
wouldn't even let his wife talk to him my brother and jamie were real close and they said no to all of them
pigiron308 (Dec 27, 2006 9:03:00 PM)
He was only a danger to himself in the house
pigiron308 (Dec 27, 2006 9:03:44 PM)
so sad
barbg (Dec 27, 2006 9:05:53 PM)
it really senseless he has been different since he came back the first time he had his best friend killed right in front of him the first time over and he was his baby's godfather and all they had been friends for a long time nad that really tramatised jamie
pigiron308 (Dec 27, 2006 9:07:39 PM)
He needed help from the Army doctors
pigiron308 (Dec 27, 2006 9:08:24 PM)
not orders to go back to Iraq
barbg (Dec 27, 2006 9:09:33 PM)
i know my sister tried to get him to go see someone then he met his wife and things seemed to be going really good till he got his orders for iraq
pigiron308 (Dec 27, 2006 9:11:12 PM)
As much as I dislike Charlie Rangle I understand what he is talking about when he says bring back the draft
barbg (Dec 27, 2006 9:12:51 PM)
i'd like to see no wars at all but that will never happen
pigiron308 (Dec 27, 2006 9:14:04 PM)
The idea of being in the reserves is not 2 years in Iraq
pigiron308 (Dec 27, 2006 9:14:56 PM)
We are going to get shut down
pigiron308 (Dec 27, 2006 9:15:44 PM)
so sorry about your nephew
barbg (Dec 27, 2006 9:16:02 PM)
he was in the regular army for 4 yrs and they offered him $25,000.00 to stay in and he got out but they could call him back
pigiron308 (Dec 27, 2006 9:16:40 PM)
that stinks
barbg (Dec 27, 2006 9:16:49 PM)
i know