Living with ALS

Jim_VA (Dec 15, 2008 1:52:15 PM)
(This user has entered Living with ALS)

mommazooms (Dec 15, 2008 1:52:46 PM)
Hi Jim! How are you?

Jim_VA (Dec 15, 2008 1:55:29 PM)
Hi Beth I am fine ty how are you

mommazooms (Dec 15, 2008 1:55:59 PM)
I'm well, thanks...

Jim_VA (Dec 15, 2008 1:56:31 PM)
good

Jim_VA (Dec 15, 2008 1:57:34 PM)
any snow yet

mommazooms (Dec 15, 2008 1:57:40 PM)
I've got a new Roho seat! A high profile Quadtro... I'm loving it!

Jim_VA (Dec 15, 2008 1:58:32 PM)
yes that is what I have

mommazooms (Dec 15, 2008 1:58:34 PM)
No! It's 52 today :(

Jim_VA (Dec 15, 2008 1:59:10 PM)
nice

mommazooms (Dec 15, 2008 2:01:03 PM)
Not for December!

Jim_VA (Dec 15, 2008 2:01:41 PM)
our dog just ate a $5 bill

Jim_VA (Dec 15, 2008 2:02:40 PM)
warm huh

mommazooms (Dec 15, 2008 2:02:59 PM)
He wanted a Subway foot long! Lol!

Jim_VA (Dec 15, 2008 2:03:24 PM)
lol

Jim_VA (Dec 15, 2008 2:05:34 PM)
anything new up there

mommazooms (Dec 15, 2008 2:05:34 PM)
The company called on the 4th and delivered it the 5th... It didn't have the valve on the hose to screw close! They took it back and they delivered a proper one Monday

mommazooms (Dec 15, 2008 2:06:20 PM)
No, nothing here...

Jim_VA (Dec 15, 2008 2:06:26 PM)
you need that

mommazooms (Dec 15, 2008 2:06:52 PM)
Yeah!

Jim_VA (Dec 15, 2008 2:07:44 PM)
do you have a hand pump

mommazooms (Dec 15, 2008 2:11:54 PM)
Sorry, was talking to my son... Yes, it came with a pump

Jim_VA (Dec 15, 2008 2:12:18 PM)
good

westjlittle (Dec 15, 2008 2:14:21 PM)
(This user has entered Living with ALS)

westjlittle (Dec 15, 2008 2:14:37 PM)
Hi Jim Beth

mommazooms (Dec 15, 2008 2:15:03 PM)
I forgot how to work the front switch, the green & red one... It's been almost 2 months since I was fitted Hi West!

Jim_VA (Dec 15, 2008 2:15:08 PM)
Hi Jim

westjlittle (Dec 15, 2008 2:15:32 PM)
I browsed the transcripts the other day... doesn't seem like anyone is loggin on

Jim_VA (Dec 15, 2008 2:16:15 PM)
Not many

westjlittle (Dec 15, 2008 2:16:18 PM)
McCoy got robbed!

Jim_VA (Dec 15, 2008 2:16:35 PM)
Yep

westjlittle (Dec 15, 2008 2:16:59 PM)
Can you send me a Fl hat?

mommazooms (Dec 15, 2008 2:17:06 PM)
Lol! I was waiting for that!

westjlittle (Dec 15, 2008 2:17:42 PM)
I just got word that we have tickets to fiesta bowl

Jim_VA (Dec 15, 2008 2:17:43 PM)
Dan was in Wed

mommazooms (Dec 15, 2008 2:18:14 PM)
How is Dan?

westjlittle (Dec 15, 2008 2:18:53 PM)
What are the green and red switches you were taling about?

Jim_VA (Dec 15, 2008 2:20:53 PM)
broke his shoulder in 3 places and had pneumonia again

mommazooms (Dec 15, 2008 2:21:05 PM)
I have a Roho cushion and it has a red/green switch in front I forgot how to use

mommazooms (Dec 15, 2008 2:21:55 PM)
Broke his shoulder?!? How?

Jim_VA (Dec 15, 2008 2:22:31 PM)
what kind of FL hat

mommazooms (Dec 15, 2008 2:22:36 PM)
Was he dancing again? :)

westjlittle (Dec 15, 2008 2:22:42 PM)
The dude showed me too. I seem to remember to pump it up then use red to let out to comfort level then green to lock it

westjlittle (Dec 15, 2008 2:23:00 PM)
Florida Gators Hat

westjlittle (Dec 15, 2008 2:23:16 PM)
BEAT OU!!!!!!!

westjlittle (Dec 15, 2008 2:23:27 PM)
DIE DIE DIE OU

westjlittle (Dec 15, 2008 2:23:37 PM)
:-)

Jim_VA (Dec 15, 2008 2:24:04 PM)
trying transfer by himself

Jim_VA (Dec 15, 2008 2:24:13 PM)
lol

Jim_VA (Dec 15, 2008 2:25:01 PM)
how about a TN had

Jim_VA (Dec 15, 2008 2:25:09 PM)
t

westjlittle (Dec 15, 2008 2:25:32 PM)
You're no fun :-(

mommazooms (Dec 15, 2008 2:26:48 PM)
Wow! Is he in hospital?

Jim_VA (Dec 15, 2008 2:26:50 PM)
Kiffen's dad is going to Vols

Jim_VA (Dec 15, 2008 2:27:13 PM)
no

mommazooms (Dec 15, 2008 2:27:53 PM)
He's at the home?

Jim_VA (Dec 15, 2008 2:28:57 PM)
Betty will find you a gators cap

westjlittle (Dec 15, 2008 2:29:42 PM)
ALllright!

Jim_VA (Dec 15, 2008 2:30:17 PM)
he is in a nursing home

Jim_VA (Dec 15, 2008 2:36:07 PM)
it should be in the mail wednesday

Jim_VA (Dec 15, 2008 2:42:46 PM)
brb

westjlittle (Dec 15, 2008 2:45:26 PM)
I always think brb is burp

mommazooms (Dec 15, 2008 2:46:33 PM)
Lol! Jim, Is Dan in the same one he was in or a different one?

mommazooms (Dec 15, 2008 2:56:20 PM)
How much snow do you have West?

Jim_VA (Dec 15, 2008 3:04:11 PM)
Dan isin Mount Vernon KY

westjlittle (Dec 15, 2008 3:04:54 PM)
sorry I was responding to email.... hardly any snow but it was -15 last night

westjlittle (Dec 15, 2008 3:05:40 PM)
did you get hit by ice? I assume you have power

Jim_VA (Dec 15, 2008 3:06:27 PM)
George slept there!

mommazooms (Dec 15, 2008 3:06:55 PM)
No, a lot of rain though... It was mostly north of us

mommazooms (Dec 15, 2008 3:16:56 PM)
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mommazooms (Dec 15, 2008 3:17:08 PM)
(This user has entered Living with ALS)

westjlittle (Dec 15, 2008 3:18:16 PM)
Did you update to java V6 build 11 just came out!

mommazooms (Dec 15, 2008 3:20:04 PM)
Nuts! I'll do it after the chat! I was talking to my son when I signed in and forgot to check it...

westjlittle (Dec 15, 2008 3:20:42 PM)
Naturally, it shouldn't make a differce

mommazooms (Dec 15, 2008 3:21:22 PM)
Ok

mommazooms (Dec 15, 2008 3:31:21 PM)
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mommazooms (Dec 15, 2008 3:31:33 PM)
(This user has entered Living with ALS)

Jim_VA (Dec 15, 2008 3:34:45 PM)
my computer froze

mommazooms (Dec 15, 2008 3:35:45 PM)
I thought it was a little early for dinner :D

Jim_VA (Dec 15, 2008 3:36:03 PM)
lol

westjlittle (Dec 15, 2008 3:36:27 PM)
Put in microwave to warm it up

Jim_VA (Dec 15, 2008 3:40:10 PM)
Jim I got an Italian Christmas Song from a lady in Massachuetts. I will send you a copy

mommazooms (Dec 15, 2008 3:43:09 PM)
I would like a copy please!

westjlittle (Dec 15, 2008 3:44:12 PM)
The MDA absolutely hated my idea for a "protest" against ALS

westjlittle (Dec 15, 2008 3:44:35 PM)
They forbid me from associately them with the rally

Jim_VA (Dec 15, 2008 3:45:02 PM)
sure Beth

Jim_VA (Dec 15, 2008 3:45:21 PM)
lol

westjlittle (Dec 15, 2008 3:46:07 PM)
They want to be on the news but don't want to do what it takes to make it newworthy

mommazooms (Dec 15, 2008 3:46:19 PM)
What would your protest be? Thanks Jim!

Jim_VA (Dec 15, 2008 3:46:32 PM)
you are too radical lol

westjlittle (Dec 15, 2008 3:47:36 PM)
To create a newsworthy event at a date close to the event, I suggest that we hold "A Protest against ALS" I would have several groups of people on highway overpasses at rush hour. (Overpasses with sidewalks. Quebec and 470, Yosemite and I25, 120th and I25 etc ) We would not block traffic just be on the sidewalk. Each location would have big banner promoting the event. The protesters would have banners like: • STOP ALS Honk for a Cure • ALS is killing ME MDA Gift of time Each location would have spokesperson and a PALS person in wheelchair. The spokesperson would have speaking points for an interview. If we can find gulf war veteran with ALS, get them there too.

westjlittle (Dec 15, 2008 3:47:48 PM)
Here is what I gave them

westjlittle (Dec 15, 2008 3:48:39 PM)
They said it would give people the impression we were protesting MDA

Jim_VA (Dec 15, 2008 3:49:03 PM)
I think that you did not go far enough

westjlittle (Dec 15, 2008 3:49:13 PM)
I thought to myself if they were a moron they might think that

mommazooms (Dec 15, 2008 3:49:39 PM)
What?!? I don't get that

Jim_VA (Dec 15, 2008 3:49:41 PM)
lol

westjlittle (Dec 15, 2008 3:50:01 PM)
That's the rub ... all the PALS I talked to liked it

mommazooms (Dec 15, 2008 3:50:42 PM)
I like it!

westjlittle (Dec 15, 2008 3:50:49 PM)
I asked kinkos for a quote to make me a sign but it was $70

westjlittle (Dec 15, 2008 3:51:39 PM)
Here is what the local news lady said

westjlittle (Dec 15, 2008 3:51:41 PM)
Hi Jim, I think that’s a great idea. Maybe during the morning rush hour? In a safe way of course. You should also compile a list of all the TV stations and email the assignment desk and a specific reporter since stories do fall through the cracks. It’s ideal to make contact with at least two people in each news department. I don’t know about newspapers, but I think you contact their city desk. You might even consider contacting Gary Massaro with the Rocky who writes human interest stories. He’s a great guy and might like this idea. If you don’t get any news media there, make sure someone takes a still camera and takes pictures that can be sent out to all the news stations. We accept them at myreport@thedenverchannel.com The websites are also a vital part of our newsgathering operations, for both tv stations and newspapers. Anne Trujillo KMGH 7News Anchor 303-832-0110 anne_trujillo@kmgh.com

mommazooms (Dec 15, 2008 3:53:30 PM)
That's great!

westjlittle (Dec 15, 2008 3:54:19 PM)
I have decided that I'm going to make a sign and ride my wheelchair out to the road.

westjlittle (Dec 15, 2008 3:55:00 PM)
My office is on a main artery road. I can sit there and drink myensure

westjlittle (Dec 15, 2008 3:55:34 PM)
Lecia hates it though... I need to do it without her knowing

westjlittle (Dec 15, 2008 3:55:59 PM)
I'll just surprise them when I'm on the news

westjlittle (Dec 15, 2008 3:56:54 PM)
I'll probably look like a hobo asking for change!

westjlittle (Dec 15, 2008 3:57:13 PM)
Maybe I'll make some coin!

westjlittle (Dec 15, 2008 3:57:27 PM)
for the event of course!

Jim_VA (Dec 15, 2008 3:57:47 PM)
we need Grizzly Bears instead of Teddy Bears! Now you're talking!

mommazooms (Dec 15, 2008 3:58:09 PM)
Lol! Good luck with it!

Jim_VA (Dec 15, 2008 3:58:48 PM)
Wear that Gator cap!

westjlittle (Dec 15, 2008 3:59:59 PM)
I haven't inspired you to take up the march?

Jim_VA (Dec 15, 2008 4:01:24 PM)
They think that they are protecting their income

westjlittle (Dec 15, 2008 4:01:54 PM)
I think you meant to say image

Jim_VA (Dec 15, 2008 4:02:47 PM)
No it's money

westjlittle (Dec 15, 2008 4:03:12 PM)
They were more concerned about any possible negative r3eaction

westjlittle (Dec 15, 2008 4:03:48 PM)
Sure its always money

Jim_VA (Dec 15, 2008 4:04:17 PM)
image = money to them

westjlittle (Dec 15, 2008 4:05:38 PM)
I have decided that I will let Lecia attend the meetings. They are a bit rude about waiting for me to comment. Saying stuff like "While he is typing..."

westjlittle (Dec 15, 2008 4:06:02 PM)
It's hard to debate with a keyboard

Jim_VA (Dec 15, 2008 4:06:16 PM)
Same with ALSAQ

Jim_VA (Dec 15, 2008 4:07:14 PM)
good idea

mommazooms (Dec 15, 2008 4:08:12 PM)
I'd make flash cards that said F*ck off and hold it up when they say that!!!

Jim_VA (Dec 15, 2008 4:08:55 PM)
they have some nerve huh

westjlittle (Dec 15, 2008 4:08:58 PM)
It's easier to program butto on dynvox to do it

mommazooms (Dec 15, 2008 4:09:31 PM)
That is unbelievably RUDE to say that while your typing!

westjlittle (Dec 15, 2008 4:09:51 PM)
Even my wife didn't get it

westjlittle (Dec 15, 2008 4:10:06 PM)
At work people wait

mommazooms (Dec 15, 2008 4:10:28 PM)
Lol! And turn up the volume!

Jim_VA (Dec 15, 2008 4:11:52 PM)
they obviously don't care what their image means to you

mommazooms (Dec 15, 2008 4:13:32 PM)
I'll be back in 20 minutes...

westjlittle (Dec 15, 2008 4:13:38 PM)
They work hard but they are all young women without much experience dealing in a 'collaborative' meeting setting.

westjlittle (Dec 15, 2008 4:14:02 PM)
I think the oldest of them is 35

westjlittle (Dec 15, 2008 4:14:14 PM)
Most are early 20

Jim_VA (Dec 15, 2008 4:14:40 PM)
wow

Jim_VA (Dec 15, 2008 4:16:07 PM)
I would tell them what for

westjlittle (Dec 15, 2008 4:16:18 PM)
The district manager is having her first baby

westjlittle (Dec 15, 2008 4:16:47 PM)
They politely ignore... I call it the pocket veto

Jim_VA (Dec 15, 2008 4:16:56 PM)
nice

Jim_VA (Dec 15, 2008 4:18:12 PM)
are they paid

westjlittle (Dec 15, 2008 4:18:26 PM)
yes they have big office here

westjlittle (Dec 15, 2008 4:19:14 PM)
I didn't realize that we, (denver), are the only other site holding an augies quest fundraiser

Jim_VA (Dec 15, 2008 4:20:01 PM)
huh

westjlittle (Dec 15, 2008 4:20:56 PM)
Implying that we have a big ofice

Jim_VA (Dec 15, 2008 4:20:59 PM)
you would think SF

westjlittle (Dec 15, 2008 4:21:10 PM)
SF is the other spot

Jim_VA (Dec 15, 2008 4:22:16 PM)
ah

westjlittle (Dec 15, 2008 4:25:18 PM)
brb

Jim_VA (Dec 15, 2008 4:26:02 PM)
k

westjlittle (Dec 15, 2008 4:30:00 PM)
Do you have a power generator for a blackout?

Jim_VA (Dec 15, 2008 4:31:43 PM)
no I have an inverter in the van

Jim_VA (Dec 15, 2008 4:33:18 PM)
plus about 20 hours of battery power

westjlittle (Dec 15, 2008 4:35:46 PM)
I'm going to buy small one

Jim_VA (Dec 15, 2008 4:35:46 PM)
if all else fails we have an AMBU

westjlittle (Dec 15, 2008 4:36:21 PM)
I have to recall the last time... three days with three feet of snow

westjlittle (Dec 15, 2008 4:36:36 PM)
They sent out hummers and snow mobiles

Jim_VA (Dec 15, 2008 4:36:53 PM)
generator?

westjlittle (Dec 15, 2008 4:37:02 PM)
yes generator

Jim_VA (Dec 15, 2008 4:37:48 PM)
do you have a BVM?

westjlittle (Dec 15, 2008 4:38:05 PM)
BVM? huh

westjlittle (Dec 15, 2008 4:38:51 PM)
it is for bipap

Jim_VA (Dec 15, 2008 4:39:08 PM)
bag valve mask

westjlittle (Dec 15, 2008 4:39:19 PM)
no

mommazooms (Dec 15, 2008 4:39:42 PM)
I'm back

westjlittle (Dec 15, 2008 4:39:47 PM)
probabily a good idea

Jim_VA (Dec 15, 2008 4:40:07 PM)
I would get several

Jim_VA (Dec 15, 2008 4:41:02 PM)
I have about 5

mommazooms (Dec 15, 2008 4:44:03 PM)
I believe our fire department has a list of people who are disabled in the area and have machinery and when the power goes out they check on them...

Jim_VA (Dec 15, 2008 4:45:26 PM)
nice

Jim_VA (Dec 15, 2008 4:47:01 PM)
the worst thing is my bed goes flat

Jim_VA (Dec 15, 2008 4:48:45 PM)
I can always go to the hospital

mommazooms (Dec 15, 2008 4:48:47 PM)
It also helps that we've got two firefighters on the road so they know where the road is :)

mommazooms (Dec 15, 2008 4:49:25 PM)
How far away?

Jim_VA (Dec 15, 2008 4:49:25 PM)
great

mommazooms (Dec 15, 2008 4:50:40 PM)
plus my father-in-law was a big name in town

Jim_VA (Dec 15, 2008 4:50:54 PM)
oh about 10 minutes away

westjlittle (Dec 15, 2008 4:51:37 PM)
Well, like I said, the last time it happened there was 3ft of snow on ground

mommazooms (Dec 15, 2008 4:52:13 PM)
Can you sit in your chair when your bed goes flat?

mommazooms (Dec 15, 2008 4:53:27 PM)
What does the Farmer's Almanac say for this winter?

Jim_VA (Dec 15, 2008 4:54:55 PM)
in Arlington I live between 2 fire stations

Jim_VA (Dec 15, 2008 4:56:19 PM)
both are about 7 city blocks away

Jim_VA (Dec 15, 2008 4:57:29 PM)
they are great

Jim_VA (Dec 15, 2008 5:00:00 PM)
if one is out on a call the other comes

mommazooms (Dec 15, 2008 5:00:44 PM)
Nice

Jim_VA (Dec 15, 2008 5:00:58 PM)
yes

Jim_VA (Dec 15, 2008 5:02:10 PM)
I think that we have 9 stations

mommazooms (Dec 15, 2008 5:02:42 PM)
Nice so, is Dan back at the TLC he was at or is he recouping at another place?

Jim_VA (Dec 15, 2008 5:04:52 PM)
He is in a nursing home permanently

mommazooms (Dec 15, 2008 5:05:30 PM)
We have 9 or more in town. The closest is about .8 mile from the house but we have an EMT down the road

Jim_VA (Dec 15, 2008 5:06:22 PM)
I would guess that they take him to a hospital

mommazooms (Dec 15, 2008 5:06:44 PM)
Ok, I'll see you next week!

mommazooms (Dec 15, 2008 5:06:46 PM)
(This user has left DigiChat)

westjlittle (Dec 15, 2008 5:07:06 PM)
She left quick

Jim_VA (Dec 15, 2008 5:07:26 PM)
yep

westjlittle (Dec 15, 2008 5:07:35 PM)
I think the sweet spot for prices is $700

westjlittle (Dec 15, 2008 5:07:43 PM)
for generator

westjlittle (Dec 15, 2008 5:08:01 PM)
4000W runs for 10 hours

westjlittle (Dec 15, 2008 5:08:23 PM)
You could power whole room with that

westjlittle (Dec 15, 2008 5:08:33 PM)
My bipap is 300W

Jim_VA (Dec 15, 2008 5:08:35 PM)
decent

westjlittle (Dec 15, 2008 5:08:58 PM)
I'm guessing a bed is 1000W when running

westjlittle (Dec 15, 2008 5:09:44 PM)
If I had $5K I'd get a natural ga system

westjlittle (Dec 15, 2008 5:09:57 PM)
run the whole house

westjlittle (Dec 15, 2008 5:10:14 PM)
Maybe 10K

Jim_VA (Dec 15, 2008 5:10:24 PM)
I have a 1500 w inverter

westjlittle (Dec 15, 2008 5:11:37 PM)
The smaller ones don't have long running

westjlittle (Dec 15, 2008 5:11:52 PM)
I probably only need 200W

westjlittle (Dec 15, 2008 5:12:02 PM)
Maybe four hours

westjlittle (Dec 15, 2008 5:12:17 PM)
at load

Jim_VA (Dec 15, 2008 5:12:46 PM)
get that bvm

westjlittle (Dec 15, 2008 5:12:55 PM)
do you have webcam?

Jim_VA (Dec 15, 2008 5:13:15 PM)
yes

westjlittle (Dec 15, 2008 5:13:20 PM)
I just statred doing skype with my grandma

Jim_VA (Dec 15, 2008 5:13:43 PM)
ah

westjlittle (Dec 15, 2008 5:13:45 PM)
My cousi helped

westjlittle (Dec 15, 2008 5:14:00 PM)
She loved seeing the boys

westjlittle (Dec 15, 2008 5:14:13 PM)
In any case, I will talk to you later

Jim_VA (Dec 15, 2008 5:14:24 PM)
neat

westjlittle (Dec 15, 2008 5:14:50 PM)
We don't need much more than this since we can't talk

Jim_VA (Dec 15, 2008 5:15:22 PM)
ok take care bye

westjlittle (Dec 15, 2008 5:15:33 PM)
BYE

westjlittle (Dec 15, 2008 5:15:38 PM)
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Jim_VA (Dec 15, 2008 5:15:44 PM)
(This user has left DigiChat)