Living with ALS
mommazooms (Nov 3, 2008 1:46:39 PM)
mommazooms (Nov 3, 2008 1:57:02 PM)
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Jim_VA (Nov 3, 2008 1:58:51 PM)
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mommazooms (Nov 3, 2008 2:09:22 PM)
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mommazooms (Nov 3, 2008 2:09:22 PM)
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Jim_VA (Nov 3, 2008 2:09:54 PM)
Hi Beth
Jim_VA (Nov 3, 2008 2:10:21 PM)
how are you]
mommazooms (Nov 3, 2008 2:10:27 PM)
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Jim_VA (Nov 3, 2008 2:10:52 PM)
wb
mommazooms (Nov 3, 2008 2:11:10 PM)
Hi Jim!
Jim_VA (Nov 3, 2008 2:12:04 PM)
Hi Beth how are you
mommazooms (Nov 3, 2008 2:13:10 PM)
Thx! It wouldn't let me sign in after I got booted :) I'm great, ty! How are you?
Jim_VA (Nov 3, 2008 2:13:58 PM)
fine ty
mommazooms (Nov 3, 2008 2:14:19 PM)
Did you happen to see 60 Minutes last night?
mommazooms (Nov 3, 2008 2:15:00 PM)
http://www.cbsnews.com/video/watch/?id=4564186n
Jim_VA (Nov 3, 2008 2:15:02 PM)
yes I did
mommazooms (Nov 3, 2008 2:15:34 PM)
That was neat!
Jim_VA (Nov 3, 2008 2:16:20 PM)
yes it was
Jim_VA (Nov 3, 2008 2:18:09 PM)
not what I am looking for but great technology
mommazooms (Nov 3, 2008 2:19:49 PM)
Lol! Yeah, I like the fact you can write w/o drilling into your skull!
Jim_VA (Nov 3, 2008 2:20:27 PM)
interesting that the neurons fire but nothing happens
Jim_VA (Nov 3, 2008 2:20:56 PM)
lol
Jim_VA (Nov 3, 2008 2:23:35 PM)
ladies could cover it with a bee hive
Jim_VA (Nov 3, 2008 2:25:18 PM)
bald men are exposed lol
mommazooms (Nov 3, 2008 2:25:19 PM)
Lol! I'd rather wear the cap with the holes! I could shave my head!
Jim_VA (Nov 3, 2008 2:25:44 PM)
lol
Jim_VA (Nov 3, 2008 2:27:26 PM)
they could put a wig over the cap
mommazooms (Nov 3, 2008 2:31:03 PM)
Lol! It looks like a frosting cap that hair dressers use - they would pull the hair 2Bfrosted/bleached through the holes :D
Jim_VA (Nov 3, 2008 2:31:50 PM)
lol
mommazooms (Nov 3, 2008 2:35:01 PM)
I thought that JoePa & Penn State would be #2 on the BCS!
Jim_VA (Nov 3, 2008 2:36:14 PM)
he should be
mommazooms (Nov 3, 2008 2:37:51 PM)
Nope! AL #1, Texas Tech #2, Penn State #3...
Jim_VA (Nov 3, 2008 2:38:46 PM)
I think that the championship game will be T Tech & PSU
westjlittle (Nov 3, 2008 2:39:53 PM)
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Jim_VA (Nov 3, 2008 2:40:06 PM)
AL will probably get hammered by FL
Jim_VA (Nov 3, 2008 2:40:33 PM)
hi Jim
westjlittle (Nov 3, 2008 2:40:40 PM)
I don't want to talk about football
westjlittle (Nov 3, 2008 2:40:53 PM)
I'm in mourning
mommazooms (Nov 3, 2008 2:40:58 PM)
Hi West!
Jim_VA (Nov 3, 2008 2:41:03 PM)
lol
westjlittle (Nov 3, 2008 2:41:06 PM)
Hi!
westjlittle (Nov 3, 2008 2:41:55 PM)
I went to the Bronco game yesterday too. They got hammered
westjlittle (Nov 3, 2008 2:42:11 PM)
I used my new permobil C300!
mommazooms (Nov 3, 2008 2:42:12 PM)
Sorry to hear about your loss in football...
Jim_VA (Nov 3, 2008 2:42:40 PM)
that was a great game except the outcome
mommazooms (Nov 3, 2008 2:42:49 PM)
Yay! How did it go?
westjlittle (Nov 3, 2008 2:43:04 PM)
It took one minute to go from elated to WTF!!!
Jim_VA (Nov 3, 2008 2:43:25 PM)
lol
westjlittle (Nov 3, 2008 2:43:48 PM)
They deserved to lose.
westjlittle (Nov 3, 2008 2:44:08 PM)
Now we have to wait for OK or OK state to beat them
mommazooms (Nov 3, 2008 2:44:22 PM)
Lol! Was the speed on high?
Jim_VA (Nov 3, 2008 2:45:30 PM)
got wrecked the 1st half
westjlittle (Nov 3, 2008 2:45:37 PM)
The bronco game went fine except that my youngest got ill. we left at 3rd qtr... then as soon as we are on the highway with no where to go . He starts vomiting
westjlittle (Nov 3, 2008 2:45:50 PM)
and vomiting
westjlittle (Nov 3, 2008 2:45:54 PM)
and vomiting
westjlittle (Nov 3, 2008 2:46:06 PM)
It was a bad scene
mommazooms (Nov 3, 2008 2:46:52 PM)
Awww, poor guy...
westjlittle (Nov 3, 2008 2:46:56 PM)
I was strapped in the Wc like a indian papoose... so I could do nothing
Jim_VA (Nov 3, 2008 2:47:31 PM)
TN was outstanding
westjlittle (Nov 3, 2008 2:49:44 PM)
I saw that fulmer was out at end of season
Jim_VA (Nov 3, 2008 2:51:03 PM)
yep his fault
Jim_VA (Nov 3, 2008 2:51:46 PM)
dumb hiring
westjlittle (Nov 3, 2008 2:52:17 PM)
So we finally got to the counselor lst Tuesday, again tomorrow
westjlittle (Nov 3, 2008 2:53:11 PM)
Lecia vented a but seemed to think that my parents weren't doing enough.
westjlittle (Nov 3, 2008 2:53:53 PM)
Basically she overwhelmed
Jim_VA (Nov 3, 2008 2:53:53 PM)
how did it go
westjlittle (Nov 3, 2008 2:54:20 PM)
I got my parents and her mother on board to help more in the short term
Jim_VA (Nov 3, 2008 2:55:00 PM)
that is too bad
mommazooms (Nov 3, 2008 2:55:11 PM)
What about long term?
westjlittle (Nov 3, 2008 2:55:49 PM)
She said some surprising things so we have some issues to work through. We are going everyweek to Dec
mommazooms (Nov 3, 2008 2:56:45 PM)
What did the doc think?
westjlittle (Nov 3, 2008 2:57:18 PM)
Lecia did most of the talking
Jim_VA (Nov 3, 2008 2:57:27 PM)
I don't think that you can depend on parents
westjlittle (Nov 3, 2008 2:57:36 PM)
Nothing really from doc
westjlittle (Nov 3, 2008 2:58:12 PM)
Why do you say that? they moved here to help
westjlittle (Nov 3, 2008 2:59:01 PM)
They admittd that wqhen lecia's mother moved to around the corner... they stopped helping some
westjlittle (Nov 3, 2008 2:59:47 PM)
I've been on my dad to do things with the boys. Do things that I can't do... like paly soccer, ride bikes etc
Jim_VA (Nov 3, 2008 3:00:09 PM)
They have problems too
westjlittle (Nov 3, 2008 3:00:45 PM)
They agreed to one dinner a week, one sleepover a month, plus GP does something with boys once a week
mommazooms (Nov 3, 2008 3:01:27 PM)
That's good...
westjlittle (Nov 3, 2008 3:01:34 PM)
They problems are big for sure. (Beth they can't sell old house in OK. House value has dropped 75K)
mommazooms (Nov 3, 2008 3:02:10 PM)
Yikes!
Jim_VA (Nov 3, 2008 3:04:06 PM)
that is great but you should not depend on them to the point of fussing over what they do and don't do
westjlittle (Nov 3, 2008 3:04:42 PM)
This is a short term plan until we get Lecia out of the fun
westjlittle (Nov 3, 2008 3:04:46 PM)
funk
Jim_VA (Nov 3, 2008 3:06:23 PM)
good I hope that comes quickly
mommazooms (Nov 3, 2008 3:07:00 PM)
Ditto
Jim_VA (Nov 3, 2008 3:07:15 PM)
how long have you been married
westjlittle (Nov 3, 2008 3:07:30 PM)
14 years
westjlittle (Nov 3, 2008 3:07:52 PM)
Lived in Sin for 4
westjlittle (Nov 3, 2008 3:08:15 PM)
Started dating in 89
mommazooms (Nov 3, 2008 3:08:16 PM)
Lol!
Jim_VA (Nov 3, 2008 3:08:16 PM)
quite a while lol
Jim_VA (Nov 3, 2008 3:09:31 PM)
how old are your parents
westjlittle (Nov 3, 2008 3:09:42 PM)
68
mommazooms (Nov 3, 2008 3:10:22 PM)
Any siblings?
westjlittle (Nov 3, 2008 3:11:00 PM)
I'm the oldest at 43, bro-40,sis-38
westjlittle (Nov 3, 2008 3:11:21 PM)
My ssiter just moved to denver too
Jim_VA (Nov 3, 2008 3:11:31 PM)
my dad died in 1971
westjlittle (Nov 3, 2008 3:11:43 PM)
My brother lives in Steambaoat about 3 hrs away
Jim_VA (Nov 3, 2008 3:12:27 PM)
wow what does she do
Jim_VA (Nov 3, 2008 3:12:56 PM)
close family
westjlittle (Nov 3, 2008 3:12:57 PM)
She is a mom now but has degree in chemical engineering
Jim_VA (Nov 3, 2008 3:13:23 PM)
nice
westjlittle (Nov 3, 2008 3:13:28 PM)
I got her husband a job with some people I know
Jim_VA (Nov 3, 2008 3:13:52 PM)
great
Jim_VA (Nov 3, 2008 3:14:39 PM)
she could help some
westjlittle (Nov 3, 2008 3:14:56 PM)
If we could sell my parents old house everything would be great
Jim_VA (Nov 3, 2008 3:15:47 PM)
yes that would be nice
westjlittle (Nov 3, 2008 3:16:09 PM)
She has her hands full with kids too... but husband does all my house fix it chores.
westjlittle (Nov 3, 2008 3:16:36 PM)
He is very handy. He built there house in Oregon
mommazooms (Nov 3, 2008 3:16:56 PM)
That's great!
Jim_VA (Nov 3, 2008 3:16:59 PM)
super
westjlittle (Nov 3, 2008 3:17:42 PM)
well, its been me, me, me today... anything else going on?
Jim_VA (Nov 3, 2008 3:18:55 PM)
my grandson is setting flagstone here now
westjlittle (Nov 3, 2008 3:19:17 PM)
Did you see that segment on 60 minutes about the brain control mouse?
mommazooms (Nov 3, 2008 3:19:47 PM)
Yes!
Jim_VA (Nov 3, 2008 3:20:10 PM)
yep
westjlittle (Nov 3, 2008 3:20:26 PM)
Quite exciting
Jim_VA (Nov 3, 2008 3:21:18 PM)
not 4 me - I want a cure
westjlittle (Nov 3, 2008 3:22:08 PM)
Jim that's a bad attitude
mommazooms (Nov 3, 2008 3:22:10 PM)
What would we do w/o technology? Yeah, me too!
Jim_VA (Nov 3, 2008 3:22:23 PM)
I want to rehab at 70
Jim_VA (Nov 3, 2008 3:24:06 PM)
I thought that it was great for spinal injuries
westjlittle (Nov 3, 2008 3:24:25 PM)
Maybe it's only exciting to nerds. My first thought was I wonder how that works... can I make it?
mommazooms (Nov 3, 2008 3:25:35 PM)
Lol! That's funny! I bet you could make it West!
westjlittle (Nov 3, 2008 3:25:38 PM)
The monkey moving the arm is more for the spinal injuries. I think stem cells will solve the nerve connection ssue for them soon
Jim_VA (Nov 3, 2008 3:25:49 PM)
I wouldn't say that
Jim_VA (Nov 3, 2008 3:26:44 PM)
That would be great
westjlittle (Nov 3, 2008 3:26:45 PM)
I dn't like the one with eletrodes on the brain. If they can do wiht a cap...
mommazooms (Nov 3, 2008 3:26:52 PM)
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mommazooms (Nov 3, 2008 3:27:06 PM)
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Jim_VA (Nov 3, 2008 3:27:35 PM)
wb
Jim_VA (Nov 3, 2008 3:28:48 PM)
I thought that it was very interesting
mommazooms (Nov 3, 2008 3:28:55 PM)
TY! I installed the latest Java and this is how it treats me?
westjlittle (Nov 3, 2008 3:29:58 PM)
"interesting" but not "exciting" Jim are you really Spock?
Jim_VA (Nov 3, 2008 3:32:33 PM)
the Philly ALSA Chapter collects over 5 million a year
mommazooms (Nov 3, 2008 3:32:43 PM)
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mommazooms (Nov 3, 2008 3:32:52 PM)
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Jim_VA (Nov 3, 2008 3:33:05 PM)
wb
mommazooms (Nov 3, 2008 3:33:25 PM)
Hi
Jim_VA (Nov 3, 2008 3:35:28 PM)
it is like the registry to me I think research will surpass it
Jim_VA (Nov 3, 2008 3:37:33 PM)
I don't understand why everyone is hyped on the registry
westjlittle (Nov 3, 2008 3:41:08 PM)
We kicked off fund raising for the augies quest event.
westjlittle (Nov 3, 2008 3:41:25 PM)
We are contacing donors from last year
mommazooms (Nov 3, 2008 3:42:23 PM)
Nice! How much is your goal?
Jim_VA (Nov 3, 2008 3:42:35 PM)
great Augie's quest is excellent
westjlittle (Nov 3, 2008 3:43:33 PM)
Lecia and I are shooting for 50K
Jim_VA (Nov 3, 2008 3:44:08 PM)
wow nice
westjlittle (Nov 3, 2008 3:45:11 PM)
We did about 30K last year
Jim_VA (Nov 3, 2008 3:45:49 PM)
great
westjlittle (Nov 3, 2008 3:45:56 PM)
Its going to be hard this year
Jim_VA (Nov 3, 2008 3:47:12 PM)
the last I did was 2 years ago
westjlittle (Nov 3, 2008 3:47:59 PM)
I wetn to 50 websites two weeks ago and emaieled the contact person or PR person. Only on person responded
mommazooms (Nov 3, 2008 3:48:00 PM)
Have you guys seen the video of Lowen & Navarro? http://www.whatkindofworlddoyouwant.com/videos/view/id/884613 It benefits Augie's Quest...
Jim_VA (Nov 3, 2008 3:48:17 PM)
Other than personal donations
westjlittle (Nov 3, 2008 3:48:29 PM)
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westjlittle (Nov 3, 2008 3:49:21 PM)
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westjlittle (Nov 3, 2008 3:49:37 PM)
Post that link again
Jim_VA (Nov 3, 2008 3:49:38 PM)
I haven't seen that
mommazooms (Nov 3, 2008 3:49:38 PM)
WB! Keep plugging, you'll get responses...
westjlittle (Nov 3, 2008 3:49:49 PM)
I clicke d on it and got dumped
Jim_VA (Nov 3, 2008 3:49:55 PM)
wb
mommazooms (Nov 3, 2008 3:50:07 PM)
http://www.whatkindofworlddoyouwant.com/videos/view/id/884613
Jim_VA (Nov 3, 2008 3:51:13 PM)
I heard them several years ago live
westjlittle (Nov 3, 2008 3:52:14 PM)
Emails are easily ignored. I should call with my cimputer voice
westjlittle (Nov 3, 2008 3:52:38 PM)
Prbably think I was polster
Jim_VA (Nov 3, 2008 3:52:47 PM)
yes
Jim_VA (Nov 3, 2008 3:53:03 PM)
lol
mommazooms (Nov 3, 2008 3:55:56 PM)
You should play the ALS card - after all, you were dealt it! Call them and if they get rude tell them you're calling the news stations next!
Jim_VA (Nov 3, 2008 3:56:24 PM)
I think ALSA is smoke and mirrors
westjlittle (Nov 3, 2008 3:56:32 PM)
if I wasn't working I would drive to company office'
Jim_VA (Nov 3, 2008 3:57:04 PM)
wow
mommazooms (Nov 3, 2008 3:57:16 PM)
The ALSA of Canada has a video on Youtube.com here... http://www.youtube.com/watch?v=77HO49diVXM&eurl=http://www.facebook.com/profile.php
mommazooms (Nov 3, 2008 3:58:33 PM)
That should work if you don't get anywhere on the phone...
westjlittle (Nov 3, 2008 3:59:03 PM)
Lecia will have to call
Jim_VA (Nov 3, 2008 4:01:54 PM)
how is the van
westjlittle (Nov 3, 2008 4:02:11 PM)
Works fine
Jim_VA (Nov 3, 2008 4:02:32 PM)
good
westjlittle (Nov 3, 2008 4:02:56 PM)
Need to get that quick connect post... the tie downs are a pain but the boys can do it already
Jim_VA (Nov 3, 2008 4:03:55 PM)
I don't like them
westjlittle (Nov 3, 2008 4:04:24 PM)
I assume you mean tie downs... not the boys
mommazooms (Nov 3, 2008 4:04:51 PM)
And I bet they're proud that they can do it for you!
westjlittle (Nov 3, 2008 4:05:00 PM)
Do you have a webcam jim?
Jim_VA (Nov 3, 2008 4:05:24 PM)
unless you get the retractable type
westjlittle (Nov 3, 2008 4:06:30 PM)
We have retractable but the floor track is a little off and they won't click in. We have to use the other type
Jim_VA (Nov 3, 2008 4:06:38 PM)
yes I mean the ez-lock
westjlittle (Nov 3, 2008 4:07:26 PM)
I seem to remember it was $2K for the exlock
westjlittle (Nov 3, 2008 4:07:54 PM)
I'll need to sell my avalon first
Jim_VA (Nov 3, 2008 4:08:41 PM)
the quick connect pin I don't like
westjlittle (Nov 3, 2008 4:08:59 PM)
Why? It seems convenient
Jim_VA (Nov 3, 2008 4:09:41 PM)
Permobil has a retractable one
westjlittle (Nov 3, 2008 4:10:28 PM)
I still have my $2k from MDA. My insurance covered WC 100%
westjlittle (Nov 3, 2008 4:10:46 PM)
It was $43K on Invoice
mommazooms (Nov 3, 2008 4:10:47 PM)
You too! I'll be back in 20 minutes...
Jim_VA (Nov 3, 2008 4:11:49 PM)
you have about 11/2" ground clearence
westjlittle (Nov 3, 2008 4:11:51 PM)
BTW I got a ROHO, quad pad on the chair
Jim_VA (Nov 3, 2008 4:12:52 PM)
that is what I have
westjlittle (Nov 3, 2008 4:13:38 PM)
Oh, so the latch on the WC lowers the clearnce. That would be annoying. Looks to be aobout 4-5 inches now
westjlittle (Nov 3, 2008 4:14:12 PM)
Maybe I could get the permobil one
westjlittle (Nov 3, 2008 4:15:05 PM)
I'm still waiting for them to mount my dynavox... I'll ask
Jim_VA (Nov 3, 2008 4:15:34 PM)
I don't know if the retractable can be added or not
Jim_VA (Nov 3, 2008 4:16:18 PM)
yes see what they say
Jim_VA (Nov 3, 2008 4:17:27 PM)
it will not mate with the ez-lock
westjlittle (Nov 3, 2008 4:17:42 PM)
I don't have anything now
westjlittle (Nov 3, 2008 4:17:55 PM)
I'm flexible
Jim_VA (Nov 3, 2008 4:19:01 PM)
you need the Permobil floor unit also
westjlittle (Nov 3, 2008 4:19:32 PM)
I'm sure they will have the details. Do you have it?
Jim_VA (Nov 3, 2008 4:20:01 PM)
I had an ez-lock
Jim_VA (Nov 3, 2008 4:21:15 PM)
on my manual chair
Jim_VA (Nov 3, 2008 4:21:43 PM)
stunk
Jim_VA (Nov 3, 2008 4:22:53 PM)
I use 4 point manual now
westjlittle (Nov 3, 2008 4:27:00 PM)
So the worry I have is that if I start to use chair, I get weaker quicker. I'll contrast that with avoiding bonking my head
Jim_VA (Nov 3, 2008 4:27:43 PM)
lol
Jim_VA (Nov 3, 2008 4:28:46 PM)
I think light exercise is good
westjlittle (Nov 3, 2008 4:29:28 PM)
I Wouldn't trudging down the hall witha walker exercise
Jim_VA (Nov 3, 2008 4:30:43 PM)
no but your arms
mommazooms (Nov 3, 2008 4:31:16 PM)
I'm here... Corn chowder for dinner...
Jim_VA (Nov 3, 2008 4:31:33 PM)
use soup cans
westjlittle (Nov 3, 2008 4:32:04 PM)
My arms get a steady workout all day.
Jim_VA (Nov 3, 2008 4:32:14 PM)
good stuff
westjlittle (Nov 3, 2008 4:32:17 PM)
Getting up
Jim_VA (Nov 3, 2008 4:32:28 PM)
ah
Jim_VA (Nov 3, 2008 4:33:47 PM)
I prefer clam chowder
Jim_VA (Nov 3, 2008 4:35:17 PM)
New England
mommazooms (Nov 3, 2008 4:36:29 PM)
Me2!
Jim_VA (Nov 3, 2008 4:37:21 PM)
lol wb
mommazooms (Nov 3, 2008 4:39:48 PM)
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westjlittle (Nov 3, 2008 4:42:10 PM)
I have to reboot for something I doing at work... so I'm going to call it a day. Be Well!
westjlittle (Nov 3, 2008 4:42:26 PM)
bye
westjlittle (Nov 3, 2008 4:43:00 PM)
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Jim_VA (Nov 3, 2008 4:43:01 PM)
bye
Jim_VA (Nov 3, 2008 4:58:17 PM)
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