Living with ALS

Jim_VA (Nov 17, 2008 2:01:49 PM)
(This user has entered Living with ALS)

mommazooms (Nov 17, 2008 2:02:42 PM)
(This user has entered Living with ALS)

mommazooms (Nov 17, 2008 2:03:11 PM)
Hi Jim!

Jim_VA (Nov 17, 2008 2:03:21 PM)
Hi Beth

Jim_VA (Nov 17, 2008 2:04:43 PM)
how are you today

mommazooms (Nov 17, 2008 2:05:40 PM)
I'm well, thanks... How are you?

Jim_VA (Nov 17, 2008 2:06:17 PM)
fine ty

mommazooms (Nov 17, 2008 2:14:27 PM)
Are you having everyone over for Thanksgiving?

westjlittle (Nov 17, 2008 2:17:02 PM)
(This user has entered Living with ALS)

mommazooms (Nov 17, 2008 2:17:37 PM)
Hi West!

westjlittle (Nov 17, 2008 2:17:49 PM)
hello all

westjlittle (Nov 17, 2008 2:18:04 PM)
I was sick last week

Jim_VA (Nov 17, 2008 2:18:08 PM)
I am going to reboot brb - yes they are taking me to Florida - how about you

mommazooms (Nov 17, 2008 2:18:55 PM)
How are you today West?

Jim_VA (Nov 17, 2008 2:19:31 PM)
Hi Jim sorry to hear that

westjlittle (Nov 17, 2008 2:19:37 PM)
I'm pretty tired. recovering from weekend with buys

westjlittle (Nov 17, 2008 2:19:43 PM)
boys

Jim_VA (Nov 17, 2008 2:20:07 PM)
buoys

mommazooms (Nov 17, 2008 2:20:16 PM)
I asked Jim what he was doing for Turkey Day... I'm staying home...

westjlittle (Nov 17, 2008 2:20:26 PM)
I can't seem to get rid of crap in my chest even with cough assist

westjlittle (Nov 17, 2008 2:21:29 PM)
Always some phlegm

Jim_VA (Nov 17, 2008 2:21:34 PM)
how are the sessions going?

mommazooms (Nov 17, 2008 2:21:48 PM)
I had a cold the week before, it stayed in my head

Jim_VA (Nov 17, 2008 2:22:05 PM)
bummer

westjlittle (Nov 17, 2008 2:22:53 PM)
If you mean therapy... Lecia and I are working through things but we have a long road

mommazooms (Nov 17, 2008 2:23:20 PM)
Made my head feel heavier than 8lbs. :)

Jim_VA (Nov 17, 2008 2:23:41 PM)
I don't usually get colds

mommazooms (Nov 17, 2008 2:24:13 PM)
At least you're working on them!

westjlittle (Nov 17, 2008 2:24:17 PM)
My kids will be the death of me with all the crap they bring home

westjlittle (Nov 17, 2008 2:24:30 PM)
germs and such

Jim_VA (Nov 17, 2008 2:24:43 PM)
that is good Jim

westjlittle (Nov 17, 2008 2:24:51 PM)
We make them wash hands etc

mommazooms (Nov 17, 2008 2:24:57 PM)
Don't you get a flu shot?

westjlittle (Nov 17, 2008 2:25:06 PM)
yes

westjlittle (Nov 17, 2008 2:25:21 PM)
nothing stops a cold

westjlittle (Nov 17, 2008 2:29:17 PM)
we are doing nothing for thanksgiving...just staying home

Jim_VA (Nov 17, 2008 2:30:04 PM)
I bought a camo Tennessee cap with a green "T". I told my boys that it was akin to wearing a bag over the head

westjlittle (Nov 17, 2008 2:30:53 PM)
LOL

mommazooms (Nov 17, 2008 2:31:16 PM)
What do you take when you get a cold? I take Dayquil/Nyquil pills to aleviate some of the symptoms... Lol!

Jim_VA (Nov 17, 2008 2:31:31 PM)
Fl & Al

westjlittle (Nov 17, 2008 2:31:44 PM)
I take similar stuff

westjlittle (Nov 17, 2008 2:32:25 PM)
IT seems like I've been living on cough susspresant

westjlittle (Nov 17, 2008 2:32:52 PM)
the BIPAP tickles that stuff then I start coughing

Jim_VA (Nov 17, 2008 2:32:53 PM)
not good

mommazooms (Nov 17, 2008 2:33:07 PM)
West, were you the one that tried Dasher?

westjlittle (Nov 17, 2008 2:33:23 PM)
I see the doc on thursday

westjlittle (Nov 17, 2008 2:33:41 PM)
I have tried it but still type faster

mommazooms (Nov 17, 2008 2:34:13 PM)
Lucky you! :)

Jim_VA (Nov 17, 2008 2:34:21 PM)
good ask about a nebulizer

mommazooms (Nov 17, 2008 2:34:56 PM)
What does that do?

westjlittle (Nov 17, 2008 2:34:58 PM)
I think that I'm not drinking enough

westjlittle (Nov 17, 2008 2:35:08 PM)
water not beer

mommazooms (Nov 17, 2008 2:35:38 PM)
lol!

mommazooms (Nov 17, 2008 2:36:47 PM)
I also suck on cough drops...

Jim_VA (Nov 17, 2008 2:37:13 PM)
lol

westjlittle (Nov 17, 2008 2:37:43 PM)
My tongue doesn't work well enough fr that

mommazooms (Nov 17, 2008 2:39:13 PM)
I keep them under my tongue

westjlittle (Nov 17, 2008 2:40:41 PM)
I'm almost ready to give up eating... It is a pain

westjlittle (Nov 17, 2008 2:40:51 PM)
Only do the peg

Jim_VA (Nov 17, 2008 2:41:01 PM)
a nebulizer for Albuterol Sulfate

Jim_VA (Nov 17, 2008 2:42:01 PM)
it breaks up the stuff

mommazooms (Nov 17, 2008 2:43:10 PM)
Thanks for the answer...

mommazooms (Nov 17, 2008 2:43:46 PM)
Sorry to hear that West

Jim_VA (Nov 17, 2008 2:44:42 PM)
do you think Lecia would help with a project

westjlittle (Nov 17, 2008 2:45:08 PM)
It seems like a prudent course of action. Avoid aspiration and coking

westjlittle (Nov 17, 2008 2:45:46 PM)
Maybe...Lecia and I are working on the MDA fundraising event right now

mommazooms (Nov 17, 2008 2:45:51 PM)
Yes

Jim_VA (Nov 17, 2008 2:46:03 PM)
yes

Jim_VA (Nov 17, 2008 2:47:34 PM)
I am looking at ALSA'S tax records

westjlittle (Nov 17, 2008 2:47:54 PM)
for what?

westjlittle (Nov 17, 2008 2:48:17 PM)
Are they in cohoots with AIG?

Jim_VA (Nov 17, 2008 2:49:08 PM)
from what I see research amount is bs

westjlittle (Nov 17, 2008 2:49:49 PM)
I have always felt they were more patient oriented

Jim_VA (Nov 17, 2008 2:50:12 PM)
a false inpression

mommazooms (Nov 17, 2008 2:51:43 PM)
Ok, so who should my parents be sending their donations to, AQuest? They make a donation a couple of times a year to ALSA in CT

Jim_VA (Nov 17, 2008 2:51:55 PM)
on the local level--maybe

westjlittle (Nov 17, 2008 2:52:58 PM)
Yes locally they are patient oriented

Jim_VA (Nov 17, 2008 2:53:06 PM)
if they want it to go to research

mommazooms (Nov 17, 2008 2:53:09 PM)
So sending it local is better?

westjlittle (Nov 17, 2008 2:53:16 PM)
MDA tries to do both but they drop the ball in CO

Jim_VA (Nov 17, 2008 2:54:23 PM)
no they pay dues to the national

westjlittle (Nov 17, 2008 2:55:24 PM)
why do you have the interest?

mommazooms (Nov 17, 2008 2:55:38 PM)
Who does?

westjlittle (Nov 17, 2008 2:55:43 PM)
Are they wasting money?

Jim_VA (Nov 17, 2008 2:55:56 PM)
example one chapter collected

Jim_VA (Nov 17, 2008 2:56:12 PM)
brb

Jim_VA (Nov 17, 2008 2:59:36 PM)
I am looking for my file

Jim_VA (Nov 17, 2008 3:02:41 PM)
the basic was they collected over 1m and gave about 8500 to research

Jim_VA (Nov 17, 2008 3:04:53 PM)
over 1ook to the National Organization who gives some to research also

Jim_VA (Nov 17, 2008 3:05:13 PM)
100k

Jim_VA (Nov 17, 2008 3:06:28 PM)
certainly does not add up to 40%

mommazooms (Nov 17, 2008 3:07:34 PM)
Where does the 990K out of the 1M go? Admin?

Jim_VA (Nov 17, 2008 3:08:23 PM)
our area chapter CEO makes $115 a year

westjlittle (Nov 17, 2008 3:09:19 PM)
WOW - I thought engineering paid well.

Jim_VA (Nov 17, 2008 3:09:20 PM)
not all of it

westjlittle (Nov 17, 2008 3:10:11 PM)
I fidn it hard to imagine that the 'little' girls in denver make that much

westjlittle (Nov 17, 2008 3:10:30 PM)
Everytime I got to ameeting with them I feel old

westjlittle (Nov 17, 2008 3:10:44 PM)
I'm only 43

mommazooms (Nov 17, 2008 3:10:53 PM)
How can I find out how much ours is making?

Jim_VA (Nov 17, 2008 3:11:28 PM)
(This user has left DigiChat)

westjlittle (Nov 17, 2008 3:11:53 PM)
I'll bet you can get annual report for chapter

mommazooms (Nov 17, 2008 3:12:37 PM)
How would I get that?

westjlittle (Nov 17, 2008 3:12:47 PM)
ask them for it

mommazooms (Nov 17, 2008 3:13:27 PM)
That easy? Ok :)

westjlittle (Nov 17, 2008 3:17:17 PM)
anything else going on?

mommazooms (Nov 17, 2008 3:19:40 PM)
Not much... Our son, RJ who was 15 months old when I got this death sentence, had his Senior Night at football on the 14th!

westjlittle (Nov 17, 2008 3:20:11 PM)
Is he going to college?

mommazooms (Nov 17, 2008 3:22:11 PM)
I was so happy to be there! Yes, he hopes to. He's at a tech school studying culinary arts and he visited a culinary school with the class today...

westjlittle (Nov 17, 2008 3:22:44 PM)
Does he cook a lot at home?

westjlittle (Nov 17, 2008 3:23:19 PM)
My mother went to grad school when I was in HS. I learned to cook then

mommazooms (Nov 17, 2008 3:25:40 PM)
No, we live with my parents and my father is retired so he does most of the cooking I was a pretty fair cook before ALS and when I could, I'd cook with him...

westjlittle (Nov 17, 2008 3:29:14 PM)
I wonder where jim went?

westjlittle (Nov 17, 2008 3:30:04 PM)
NYC is probably a good place to learn chefing

westjlittle (Nov 17, 2008 3:30:25 PM)
Do you ever watch kitchen nighmares?

mommazooms (Nov 17, 2008 3:30:27 PM)
Idk... He's usually right back on

Jim_VA (Nov 17, 2008 3:31:18 PM)
(This user has entered Living with ALS)

westjlittle (Nov 17, 2008 3:31:39 PM)
welcome back

mommazooms (Nov 17, 2008 3:32:00 PM)
Yeah, we like that show, all of Ramsey's shows! WB Jim!

westjlittle (Nov 17, 2008 3:32:03 PM)
Crank calling the ALSA office?

mommazooms (Nov 17, 2008 3:32:25 PM)
Lol!

Jim_VA (Nov 17, 2008 3:32:45 PM)
ty got the boot lol

westjlittle (Nov 17, 2008 3:32:47 PM)
If he would stop the Fbombs

westjlittle (Nov 17, 2008 3:33:24 PM)
he obviously doesn't have kids

westjlittle (Nov 17, 2008 3:34:29 PM)
I started thinking hwo woudl i crank call?

Jim_VA (Nov 17, 2008 3:34:39 PM)
I think ALSA'S true figures should be published

westjlittle (Nov 17, 2008 3:34:49 PM)
"Excuse me, how do i donate to telethon?

westjlittle (Nov 17, 2008 3:35:10 PM)
Can I have Jerry Lewis please?

Jim_VA (Nov 17, 2008 3:35:42 PM)
lol

mommazooms (Nov 17, 2008 3:36:08 PM)
Lol! He looked into going to the CIA (Culinary Institute of America) in NY and they require you to have 2 years of college before you even apply!

Jim_VA (Nov 17, 2008 3:37:33 PM)
my mom was CIA

mommazooms (Nov 17, 2008 3:38:24 PM)
Really?

Jim_VA (Nov 17, 2008 3:40:08 PM)
Headquarters is not far from here

Jim_VA (Nov 17, 2008 3:42:28 PM)
It was close to where the vietnam memorial is

mommazooms (Nov 17, 2008 3:42:36 PM)
Do you mean Central Intelligence Agency?

westjlittle (Nov 17, 2008 3:42:55 PM)
we are talking food

westjlittle (Nov 17, 2008 3:43:06 PM)
not spooks

Jim_VA (Nov 17, 2008 3:43:07 PM)
yes

mommazooms (Nov 17, 2008 3:43:27 PM)
Lol!

westjlittle (Nov 17, 2008 3:43:28 PM)
Beth's son wants to be a chef

westjlittle (Nov 17, 2008 3:43:44 PM)
Maybe he could be both!

Jim_VA (Nov 17, 2008 3:44:15 PM)
Central Intelligence Agency

mommazooms (Nov 17, 2008 3:44:21 PM)
Yeah, a spook chef!

westjlittle (Nov 17, 2008 3:45:06 PM)
Learn how to put 'bug' in a canole

Jim_VA (Nov 17, 2008 3:46:05 PM)
my wife worked at the Pentagon

mommazooms (Nov 17, 2008 3:46:20 PM)
There is a culinary college called the CIA - Culinary Institute of America in Hyde Park... Lol!

Jim_VA (Nov 17, 2008 3:46:37 PM)
lol

Jim_VA (Nov 17, 2008 3:47:55 PM)
we are the intelligence type

westjlittle (Nov 17, 2008 3:48:26 PM)
So you were opening letters at the post office?

Jim_VA (Nov 17, 2008 3:50:05 PM)
no I was considered customer service

Jim_VA (Nov 17, 2008 3:52:03 PM)
at one time my wife could have served you an ICBM

Jim_VA (Nov 17, 2008 3:53:23 PM)
going down to the 20s tonight

westjlittle (Nov 17, 2008 3:53:50 PM)
been there done that! We had snow on friday

mommazooms (Nov 17, 2008 3:53:51 PM)
Intercontinental breakfast menu?

Jim_VA (Nov 17, 2008 3:54:19 PM)
heading for Fl

mommazooms (Nov 17, 2008 3:55:15 PM)
We had flurries this afternoon!

Jim_VA (Nov 17, 2008 3:58:30 PM)
yes we are country folks. We have breakfast by the alphabet - aggs, bacon, coffee, and donuts

mommazooms (Nov 17, 2008 4:00:17 PM)
Lol! What does ICBM stand for?

westjlittle (Nov 17, 2008 4:00:36 PM)
INTERcontinental ballistic missle

Jim_VA (Nov 17, 2008 4:01:02 PM)
yep

mommazooms (Nov 17, 2008 4:02:36 PM)
Hey, I had part of it right! :D

Jim_VA (Nov 17, 2008 4:03:23 PM)
How do you like your aggs? By golly I like em!

westjlittle (Nov 17, 2008 4:05:01 PM)
Let's go back to your beef with alsa. I'm happy with local service. But you think they are not spending enough on research?

Jim_VA (Nov 17, 2008 4:07:10 PM)
I think that their actual figures should be published

westjlittle (Nov 17, 2008 4:08:09 PM)
because....?

Jim_VA (Nov 17, 2008 4:11:00 PM)
remember a lot of their patient services is durable medical equipment with the emphasis on durable

westjlittle (Nov 17, 2008 4:11:41 PM)
They are not buying it.

westjlittle (Nov 17, 2008 4:12:30 PM)
They probably have a lot. The last time I was at ALSA office they were preping equipment to donate somewhere else

Jim_VA (Nov 17, 2008 4:12:52 PM)
I think donors should know where their money is going

mommazooms (Nov 17, 2008 4:13:06 PM)
I'll be back in 20 minutes...

westjlittle (Nov 17, 2008 4:14:02 PM)
I'm still missing the point. Are you saying ALSA wastes money on DME?

Jim_VA (Nov 17, 2008 4:14:45 PM)
when they something durable many people use it

westjlittle (Nov 17, 2008 4:14:46 PM)
Unless you specify, charities can do wahtever with money

westjlittle (Nov 17, 2008 4:15:22 PM)
i don't work on telethon. I only work on money for research

westjlittle (Nov 17, 2008 4:15:37 PM)
ALS research

Jim_VA (Nov 17, 2008 4:19:15 PM)
exactly and I think the bottom line is 20% research and 10% patient services maybe less

Jim_VA (Nov 17, 2008 4:20:52 PM)
brb

mommazooms (Nov 17, 2008 4:28:15 PM)
I'm back!

westjlittle (Nov 17, 2008 4:28:30 PM)
Jim ran off

westjlittle (Nov 17, 2008 4:29:06 PM)
I'm eating a slice of sweet potatoe pie

mommazooms (Nov 17, 2008 4:29:51 PM)
Yeah, I saw that! That sounds good!

mommazooms (Nov 17, 2008 4:31:03 PM)
Are you still at work?

Jim_VA (Nov 17, 2008 4:31:12 PM)
back

westjlittle (Nov 17, 2008 4:31:22 PM)
Yes

westjlittle (Nov 17, 2008 4:31:53 PM)
I'm working on our spectrum analyzer software. I can't get it to compile

westjlittle (Nov 17, 2008 4:32:22 PM)
so I fiddle with it a little and try again.

mommazooms (Nov 17, 2008 4:32:38 PM)
Bummer!

Jim_VA (Nov 17, 2008 4:32:43 PM)
bummer

westjlittle (Nov 17, 2008 4:32:56 PM)
I get paid to do it!

Jim_VA (Nov 17, 2008 4:32:56 PM)
lol

mommazooms (Nov 17, 2008 4:33:41 PM)
That makes it all better!

westjlittle (Nov 17, 2008 4:33:55 PM)
So jim, you claim that alsa wastes 70% on overhead?

westjlittle (Nov 17, 2008 4:35:33 PM)
My sweet potatoe pie is gone

Jim_VA (Nov 17, 2008 4:36:17 PM)
ALSA has 3 people in DC on salaries and they contract a lobbying firm

Jim_VA (Nov 17, 2008 4:36:50 PM)
maybe more

westjlittle (Nov 17, 2008 4:36:52 PM)
It's my birthday on friday. My motheris going to cook m fried chicken for first time im 10 years

mommazooms (Nov 17, 2008 4:37:40 PM)
Happy 44th Birthday!

westjlittle (Nov 17, 2008 4:37:55 PM)
43

westjlittle (Nov 17, 2008 4:38:05 PM)
I exgaerated

westjlittle (Nov 17, 2008 4:38:48 PM)
I just realized I missed talking about the election

Jim_VA (Nov 17, 2008 4:38:55 PM)
Happy Birthday Friday - eat mo chikn

mommazooms (Nov 17, 2008 4:39:14 PM)
My apologies! :) Will you be able to enjoy the meal?

westjlittle (Nov 17, 2008 4:39:25 PM)
My vote fianlly counted towards the electoral tally

Jim_VA (Nov 17, 2008 4:39:48 PM)
great

westjlittle (Nov 17, 2008 4:39:53 PM)
I can eat slow but not alot. The grease willhelp slide it down

westjlittle (Nov 17, 2008 4:40:25 PM)
That is significatn because my vote for president has nver counted.

westjlittle (Nov 17, 2008 4:40:47 PM)
My state always went to the other guy

Jim_VA (Nov 17, 2008 4:41:00 PM)
I think he is off to a good start

westjlittle (Nov 17, 2008 4:41:07 PM)
obama will rescind the stem cell ban

Jim_VA (Nov 17, 2008 4:42:16 PM)
yes and restrictions on lobbyists

westjlittle (Nov 17, 2008 4:44:01 PM)
It will be pork politics for sure on capital hill

Jim_VA (Nov 17, 2008 4:44:02 PM)
but Hillary Sec of State - puke

westjlittle (Nov 17, 2008 4:44:20 PM)
I agree.

Jim_VA (Nov 17, 2008 4:44:36 PM)
lol

westjlittle (Nov 17, 2008 4:44:52 PM)
We have colin powell, albright

mommazooms (Nov 17, 2008 4:44:56 PM)
Lol!

westjlittle (Nov 17, 2008 4:45:23 PM)
Let hillery work on healthcare again

westjlittle (Nov 17, 2008 4:46:07 PM)
This disease has made me think that this is big issue

Jim_VA (Nov 17, 2008 4:46:23 PM)
he seems to want to work with McCain

westjlittle (Nov 17, 2008 4:47:09 PM)
I thiink he wants help to control pork

Jim_VA (Nov 17, 2008 4:47:39 PM)
yes much more than they think

Jim_VA (Nov 17, 2008 4:48:44 PM)
McCain is 100% against pork

westjlittle (Nov 17, 2008 4:48:50 PM)
I think obama was in there long enough to see the problems with pork but not get sucked in

westjlittle (Nov 17, 2008 4:49:17 PM)
I wish that the line item veto was around

westjlittle (Nov 17, 2008 4:49:33 PM)
I haven't heard that recently

westjlittle (Nov 17, 2008 4:49:48 PM)
reagan wanted tjat

Jim_VA (Nov 17, 2008 4:49:58 PM)
has been for years - yes

mommazooms (Nov 17, 2008 4:50:07 PM)
Idk what pork on capital hill is? Excuse my stupidity :)

westjlittle (Nov 17, 2008 4:50:53 PM)
Pork is a gneric term that means adding special apprpriations that are unrelated to at bill

Jim_VA (Nov 17, 2008 4:51:07 PM)
aka earmarks

westjlittle (Nov 17, 2008 4:51:22 PM)
Like adding $100000 for a library on a bill for roads

westjlittle (Nov 17, 2008 4:51:50 PM)
Like the bridge to nowhere in alaska

mommazooms (Nov 17, 2008 4:51:57 PM)
Oh, I see! Thanks...

Jim_VA (Nov 17, 2008 4:54:22 PM)
Hillary wanted $1.5m for a Woodstock anniversary party

Jim_VA (Nov 17, 2008 4:54:39 PM)
example

westjlittle (Nov 17, 2008 4:55:12 PM)
That's abetter example

mommazooms (Nov 17, 2008 4:55:17 PM)
Ha!

mommazooms (Nov 17, 2008 4:56:09 PM)
and she added that to... ?

westjlittle (Nov 17, 2008 4:57:09 PM)
could be anything... poeple hold out votes on vital legislation to get stuff for back home

mommazooms (Nov 17, 2008 4:57:52 PM)
Ok...

Jim_VA (Nov 17, 2008 4:58:31 PM)
I think Stevens and Jefferson are going to be Duke Cunningham's roommates

Jim_VA (Nov 17, 2008 5:00:31 PM)
I think Hillary dropped that when she first decided to run

Jim_VA (Nov 17, 2008 5:01:19 PM)
did not want that publicity

Jim_VA (Nov 17, 2008 5:03:31 PM)
earmarks are attached to bills that will pass

mommazooms (Nov 17, 2008 5:03:49 PM)
See you guys next week! Take care and stay safe! TTFN!

mommazooms (Nov 17, 2008 5:03:55 PM)
(This user has left DigiChat)

westjlittle (Nov 17, 2008 5:04:09 PM)
It's time to go

westjlittle (Nov 17, 2008 5:04:25 PM)
Bye Jim

Jim_VA (Nov 17, 2008 5:04:49 PM)
ah take care bye

westjlittle (Nov 17, 2008 5:05:01 PM)
(This user has left DigiChat)

Jim_VA (Nov 17, 2008 5:05:07 PM)
(This user has left DigiChat)