Living with ALS
mommazooms (Oct 13, 2008 1:53:05 PM)
westjlittle (Oct 13, 2008 2:02:31 PM)
(This user has entered Living with ALS)
westjlittle (Oct 13, 2008 2:02:50 PM)
hello beth
mommazooms (Oct 13, 2008 2:03:09 PM)
Hi West!
westjlittle (Oct 13, 2008 2:03:35 PM)
How are things going?
mommazooms (Oct 13, 2008 2:04:13 PM)
I'm well, thanks... How's things with you?
westjlittle (Oct 13, 2008 2:05:39 PM)
Great... Texas beat OU and is #1 today. I'm easy to satisfy
mommazooms (Oct 13, 2008 2:08:36 PM)
Lol! I saw part of the game, OU didn't look like they were all there! Congrats!
westjlittle (Oct 13, 2008 2:09:25 PM)
I watched it twice... real time then quickly with my TIVo
mommazooms (Oct 13, 2008 2:10:46 PM)
Lol!
mommazooms (Oct 13, 2008 2:12:52 PM)
UConn had a bye/buy/by week... I'm looking forward to tonights NFL game - my Giants are doing well! :)
westjlittle (Oct 13, 2008 2:13:17 PM)
bye
westjlittle (Oct 13, 2008 2:13:43 PM)
the broncos chocked
westjlittle (Oct 13, 2008 2:13:53 PM)
choked
mommazooms (Oct 13, 2008 2:13:59 PM)
TY!
Jim_VA (Oct 13, 2008 2:14:31 PM)
(This user has entered Living with ALS)
westjlittle (Oct 13, 2008 2:14:40 PM)
hi jim
mommazooms (Oct 13, 2008 2:14:56 PM)
Yeah, and the Cardinals won big! Hi Jim!
Jim_VA (Oct 13, 2008 2:15:27 PM)
Hi
Jim_VA (Oct 13, 2008 2:15:53 PM)
Beth and
Jim_VA (Oct 13, 2008 2:16:16 PM)
Jim
westjlittle (Oct 13, 2008 2:16:22 PM)
TX #1 today!
westjlittle (Oct 13, 2008 2:17:14 PM)
AL #2
westjlittle (Oct 13, 2008 2:17:22 PM)
I'm living right
mommazooms (Oct 13, 2008 2:18:46 PM)
Is that the school that has the saying “Hook'em ’horns!”?
Jim_VA (Oct 13, 2008 2:20:24 PM)
is Fulmer still working
Jim_VA (Oct 13, 2008 2:21:39 PM)
yes it is
mommazooms (Oct 13, 2008 2:28:01 PM)
My Roho seat evaluation went well last Tuesday. The PT had me sit on a pressure mat to see where the pressure was and it was more evenly distributed with the Roho than the gel cushion.
mommazooms (Oct 13, 2008 2:28:19 PM)
She has sent the info to the local supplier and I'm waiting to hear from them! Actually, I think I'll email them and see where everything stands! :)
Jim_VA (Oct 13, 2008 2:29:17 PM)
great
Jim_VA (Oct 13, 2008 2:30:56 PM)
It should be more comfortable
Jim_VA (Oct 13, 2008 2:31:57 PM)
we had our walk yesterday
mommazooms (Oct 13, 2008 2:32:22 PM)
I hated to give the one I tried out back!
mommazooms (Oct 13, 2008 2:33:01 PM)
How did it go?
Jim_VA (Oct 13, 2008 2:33:59 PM)
lol do you know what model
Jim_VA (Oct 13, 2008 2:35:11 PM)
fine very nice day
mommazooms (Oct 13, 2008 2:35:45 PM)
No, but she thought it would be a high profile model
mommazooms (Oct 13, 2008 2:35:56 PM)
Tomorrow I'm meeting with the speech therapist to be evaluated for a speech enhancer http://www.speechenhancer.com/
mommazooms (Oct 13, 2008 2:37:24 PM)
That's great West! Do you know how much you raised?
Jim_VA (Oct 13, 2008 2:40:58 PM)
we walked between the Lincoln Memorial and the Washington Monument
mommazooms (Oct 13, 2008 2:42:09 PM)
nice scenery!
Jim_VA (Oct 13, 2008 2:44:42 PM)
yes a lot of memorials right there
mommazooms (Oct 13, 2008 2:48:00 PM)
and the weather was great?
Jim_VA (Oct 13, 2008 2:48:56 PM)
yes it was
westjlittle (Oct 13, 2008 2:48:58 PM)
sorry got distraced again
Jim_VA (Oct 13, 2008 2:49:33 PM)
no problem
mommazooms (Oct 13, 2008 2:50:01 PM)
Jim, do you know how much you raised?
Jim_VA (Oct 13, 2008 2:51:30 PM)
no we don't put much effort in that
mommazooms (Oct 13, 2008 2:52:11 PM)
Oh, ok...
mommazooms (Oct 13, 2008 2:53:40 PM)
Jim- Your onscreen keyboard, is that an Erica system?
Jim_VA (Oct 13, 2008 2:54:21 PM)
they only give 40% to research and 20% patient services
mommazooms (Oct 13, 2008 2:55:01 PM)
Who?
Jim_VA (Oct 13, 2008 2:55:04 PM)
no Skeleton Key
Jim_VA (Oct 13, 2008 2:55:41 PM)
ALSA
Jim_VA (Oct 13, 2008 2:57:37 PM)
I design my own keyboard with it
westjlittle (Oct 13, 2008 2:59:36 PM)
Lecia (my wife) has been flipping out again. We are going to meet with a different therapist but any other advice?
westjlittle (Oct 13, 2008 2:59:59 PM)
She is still on anger greif phase
westjlittle (Oct 13, 2008 3:00:12 PM)
While I'm at acceptance
mommazooms (Oct 13, 2008 3:00:45 PM)
The reason I asked is the local news did a story on a PALS in CT http://www.wfsb.com/sports/17681143/detail.html
mommazooms (Oct 13, 2008 3:01:42 PM)
Does she talk to you about it?
Jim_VA (Oct 13, 2008 3:01:44 PM)
wow sorry to hear that
westjlittle (Oct 13, 2008 3:02:46 PM)
I guess we don't talk that much
westjlittle (Oct 13, 2008 3:03:04 PM)
if she talks she breaks down and cries
Jim_VA (Oct 13, 2008 3:04:14 PM)
I don't know of a quick solution
mommazooms (Oct 13, 2008 3:04:22 PM)
Sorry to hear that! I used to do that also but moved on...
mommazooms (Oct 13, 2008 3:04:50 PM)
I don't know what to say...
westjlittle (Oct 13, 2008 3:05:27 PM)
As an example, I took my boys to my mother's house for the game. She had the whole day off, we come home and within five minutes of them being bad she says "I can't take this and retreats to our bedroom
mommazooms (Oct 13, 2008 3:06:27 PM)
How old are the boys?
westjlittle (Oct 13, 2008 3:06:34 PM)
6 and 4
westjlittle (Oct 13, 2008 3:06:57 PM)
They feed off each other and get in a tizzy
westjlittle (Oct 13, 2008 3:07:17 PM)
Then one wacks the other with something
mommazooms (Oct 13, 2008 3:07:51 PM)
Wow, that's tough! Of course, that's what boys do!
mommazooms (Oct 13, 2008 3:08:40 PM)
It sounds like she might be depresend?
mommazooms (Oct 13, 2008 3:09:04 PM)
depressed
westjlittle (Oct 13, 2008 3:09:40 PM)
Yes... how to get her out of it is the problem
Jim_VA (Oct 13, 2008 3:09:50 PM)
try a mild tranquilizer
Jim_VA (Oct 13, 2008 3:11:23 PM)
that might help
mommazooms (Oct 13, 2008 3:11:55 PM)
Isn't that what the therapist does, prescribe something for depression? Or is she not willing to do that?
westjlittle (Oct 13, 2008 3:13:29 PM)
She is on drugs
westjlittle (Oct 13, 2008 3:13:51 PM)
She has been seeing therapist for two years
mommazooms (Oct 13, 2008 3:14:53 PM)
Maybe it's not the right combination
westjlittle (Oct 13, 2008 3:15:57 PM)
We are going to ratchet it up a bit and see a PhD psychaitrist
mommazooms (Oct 13, 2008 3:16:57 PM)
Maybe it's not the right therapist... Hopefully that will work...
westjlittle (Oct 13, 2008 3:17:09 PM)
We are getting closer and closer to a step up in my needs. She is not ready
Jim_VA (Oct 13, 2008 3:17:12 PM)
what does she take
westjlittle (Oct 13, 2008 3:17:23 PM)
I can't remember
mommazooms (Oct 13, 2008 3:18:00 PM)
That's hard!
westjlittle (Oct 13, 2008 3:19:26 PM)
I never liked the therapist she sees. She would say crap like "So you can't ski any more have you thought about other hobbies like stamp collecting"
mommazooms (Oct 13, 2008 3:20:34 PM)
That's bull----!
westjlittle (Oct 13, 2008 3:21:13 PM)
Yes!
mommazooms (Oct 13, 2008 3:23:15 PM)
Find one that knows what ALS is or one that has a friggin’ clue!
Jim_VA (Oct 13, 2008 3:24:27 PM)
try 0.5mg of xanax 3x a day
mommazooms (Oct 13, 2008 3:25:28 PM)
She doesn't sound like she's doing anyone a favor as a therapist
westjlittle (Oct 13, 2008 3:25:33 PM)
We're going to someone via the ALS clinic. I'm sure we will discuss doses of the various drugs she has tried
westjlittle (Oct 13, 2008 3:26:18 PM)
Maybe I'm exagerating alittle but you get the idea
Jim_VA (Oct 13, 2008 3:28:24 PM)
how old is she
mommazooms (Oct 13, 2008 3:29:21 PM)
No, I'm sure your saying it as you see it... If it's even close to what you're saying, that therapist is not a benefitting anyone with that attitude...
westjlittle (Oct 13, 2008 3:29:55 PM)
Lecia - 43 Therapist-~50
Jim_VA (Oct 13, 2008 3:32:09 PM)
how about your church
Jim_VA (Oct 13, 2008 3:32:42 PM)
minister
westjlittle (Oct 13, 2008 3:33:08 PM)
My mother's theory is that she get's too much help. She spends he whole da thinking about it
westjlittle (Oct 13, 2008 3:33:25 PM)
We have not looked into that
westjlittle (Oct 13, 2008 3:33:59 PM)
I know that sounds odd
Jim_VA (Oct 13, 2008 3:34:13 PM)
might be helpful
westjlittle (Oct 13, 2008 3:34:27 PM)
We get help with meals, help with the kids, inlaws babysit etc
mommazooms (Oct 13, 2008 3:34:29 PM)
Good luck with the ALS recommended therapist.
westjlittle (Oct 13, 2008 3:35:15 PM)
we'll see
Jim_VA (Oct 13, 2008 3:35:24 PM)
not really
mommazooms (Oct 13, 2008 3:36:23 PM)
Is the older boy in school all day? Does she do anything with her day?
westjlittle (Oct 13, 2008 3:37:20 PM)
yes in frst gr
westjlittle (Oct 13, 2008 3:37:25 PM)
all day
Jim_VA (Oct 13, 2008 3:37:47 PM)
too much time on your hands can do strange things
westjlittle (Oct 13, 2008 3:37:55 PM)
4 yo three days 1/2 day
mommazooms (Oct 13, 2008 3:39:42 PM)
Does she have any g/f she can do things with during her free time?
westjlittle (Oct 13, 2008 3:40:44 PM)
The way she tells the story she has no time for anything. However, she goes to the gym, MOPS, shopping etc
Jim_VA (Oct 13, 2008 3:41:15 PM)
I have always said keeping busy is the key to dealing with this
mommazooms (Oct 13, 2008 3:42:48 PM)
Working out releases endorphins, that's a good thing...
Jim_VA (Oct 13, 2008 3:45:34 PM)
When I started in this I designed a 4 stroke engine with no valves
mommazooms (Oct 13, 2008 3:46:03 PM)
I'm not sure what to tell you West...
westjlittle (Oct 13, 2008 3:46:55 PM)
Just fishing for ideas
mommazooms (Oct 13, 2008 3:48:40 PM)
Fish away! It doesn't hurt to ask! I just wish we could ease your trouble
Jim_VA (Oct 13, 2008 3:48:47 PM)
I thought she was going to work
westjlittle (Oct 13, 2008 3:49:32 PM)
The plan is she does that when I quit... maybe that is a bad plan
mommazooms (Oct 13, 2008 3:50:54 PM)
I would think she'd want to find something now, before you quit
Jim_VA (Oct 13, 2008 3:51:37 PM)
what work does she do
westjlittle (Oct 13, 2008 3:52:12 PM)
she worked in public health research analyzing medicare data
mommazooms (Oct 13, 2008 3:54:01 PM)
and have a solid job before you leave yours... Would she carry the insurance? Don't you have a period of time before you are on the company insurance? I've been out of the work force too long to remember...
Jim_VA (Oct 13, 2008 3:55:00 PM)
they definetly need honest help
westjlittle (Oct 13, 2008 3:55:09 PM)
She would have the ins but these days it is immediate coverage
mommazooms (Oct 13, 2008 3:56:19 PM)
Ah, that's a good thing
Jim_VA (Oct 13, 2008 3:58:01 PM)
did she work for the government or a contractor
westjlittle (Oct 13, 2008 3:58:38 PM)
University of colorado
Jim_VA (Oct 13, 2008 3:59:05 PM)
ah
Jim_VA (Oct 13, 2008 4:02:02 PM)
do they still do that work
mommazooms (Oct 13, 2008 4:02:27 PM)
Will they take her back?
westjlittle (Oct 13, 2008 4:03:03 PM)
It's hard to find the slots in gov. If you quit, then it is filled. Hardly anyone quits
westjlittle (Oct 13, 2008 4:03:18 PM)
The slot is closed
westjlittle (Oct 13, 2008 4:03:28 PM)
filled
westjlittle (Oct 13, 2008 4:03:41 PM)
that was 6 years ago
Jim_VA (Oct 13, 2008 4:06:02 PM)
maybe she could find stat work at home
westjlittle (Oct 13, 2008 4:07:25 PM)
We'll have to work on it. She has held a wide variety of public health roles
westjlittle (Oct 13, 2008 4:07:46 PM)
It won't be a problem if there is a slot open
mommazooms (Oct 13, 2008 4:08:39 PM)
Do the boys have play dates with friends?
westjlittle (Oct 13, 2008 4:08:49 PM)
yes
mommazooms (Oct 13, 2008 4:09:21 PM)
Does she take them?
westjlittle (Oct 13, 2008 4:09:36 PM)
yes
westjlittle (Oct 13, 2008 4:09:54 PM)
they trade off
westjlittle (Oct 13, 2008 4:10:01 PM)
there here etc
Jim_VA (Oct 13, 2008 4:14:24 PM)
the only thing to do is look around
mommazooms (Oct 13, 2008 4:15:33 PM)
Is she receptive to seeing a new therapist?
westjlittle (Oct 13, 2008 4:16:03 PM)
yes - we mad appt at last clinic visit
Jim_VA (Oct 13, 2008 4:16:22 PM)
by computer the job could be anywhere
mommazooms (Oct 13, 2008 4:16:56 PM)
When do you see him/her?
westjlittle (Oct 13, 2008 4:18:01 PM)
28th
Jim_VA (Oct 13, 2008 4:18:21 PM)
try to work on the ALS Registry
westjlittle (Oct 13, 2008 4:18:32 PM)
?
westjlittle (Oct 13, 2008 4:19:03 PM)
you mean for her?
Jim_VA (Oct 13, 2008 4:19:29 PM)
yes
mommazooms (Oct 13, 2008 4:22:57 PM)
I'll be back in 15 minutes...
westjlittle (Oct 13, 2008 4:24:28 PM)
Did you watch the TX game? or TN?
Jim_VA (Oct 13, 2008 4:24:36 PM)
somebody will have to put it together
westjlittle (Oct 13, 2008 4:24:54 PM)
I'll let you be a honorary longhorn
Jim_VA (Oct 13, 2008 4:25:06 PM)
tn :0(
Jim_VA (Oct 13, 2008 4:26:56 PM)
lol they have 3 rough games coming up
westjlittle (Oct 13, 2008 4:27:22 PM)
Mizzu looks vulnerable... that is dangerous for #1 team
Jim_VA (Oct 13, 2008 4:28:43 PM)
MO & TX Tech
westjlittle (Oct 13, 2008 4:33:01 PM)
Ok state showed how to beat mizzu. we have them and okstate at home. going to lubbock for txtech is hard
Jim_VA (Oct 13, 2008 4:34:07 PM)
they have ks also
westjlittle (Oct 13, 2008 4:34:58 PM)
we'll probably beat everyone and loose to TX A&M
mommazooms (Oct 13, 2008 4:35:03 PM)
I'm back :)
Jim_VA (Oct 13, 2008 4:35:19 PM)
lol
Jim_VA (Oct 13, 2008 4:35:44 PM)
wb
westjlittle (Oct 13, 2008 4:36:09 PM)
I'm trying to figure out have sort of goo Lecia gave me. I can see that it has figs in it but what elses
mommazooms (Oct 13, 2008 4:36:31 PM)
I see we're on football... Do you ever listen to ESPN radio?
westjlittle (Oct 13, 2008 4:36:49 PM)
no
Jim_VA (Oct 13, 2008 4:37:10 PM)
yes
westjlittle (Oct 13, 2008 4:37:23 PM)
I hardly listen to radio at all
westjlittle (Oct 13, 2008 4:37:34 PM)
too many commercials
mommazooms (Oct 13, 2008 4:38:01 PM)
I have iTunes on my computer and listen to them through that!
westjlittle (Oct 13, 2008 4:38:36 PM)
brb
Jim_VA (Oct 13, 2008 4:39:03 PM)
I don't listen to it
mommazooms (Oct 13, 2008 4:43:22 PM)
(This user has entered Living with ALS)
mommazooms (Oct 13, 2008 4:44:07 PM)
You can even email him comments! You can also watch the show online at http://espnradio.espn.go.com/espnradio/index
Jim_VA (Oct 13, 2008 4:44:10 PM)
(This user has entered Living with ALS)
mommazooms (Oct 13, 2008 4:44:39 PM)
WB
westjlittle (Oct 13, 2008 4:44:43 PM)
(This user has entered Living with ALS)
mommazooms (Oct 13, 2008 4:44:50 PM)
WB
westjlittle (Oct 13, 2008 4:45:03 PM)
I got booted
Jim_VA (Oct 13, 2008 4:45:10 PM)
ty
mommazooms (Oct 13, 2008 4:45:33 PM)
Me2!
Jim_VA (Oct 13, 2008 4:46:09 PM)
same here
mommazooms (Oct 13, 2008 4:47:59 PM)
You can also watch the show online here http://espnradio.espn.go.com/espnradio/index
Jim_VA (Oct 13, 2008 4:48:15 PM)
that has not happened lately
Jim_VA (Oct 13, 2008 4:49:43 PM)
I watch on the computer some
mommazooms (Oct 13, 2008 4:50:53 PM)
I like to listen to them while I'm working on pics
Jim_VA (Oct 13, 2008 4:51:56 PM)
ah
Jim_VA (Oct 13, 2008 4:53:46 PM)
I play music also
mommazooms (Oct 13, 2008 4:54:02 PM)
It's better than trying to watch SportsCenter, I can listen and still get work done :)
Jim_VA (Oct 13, 2008 4:54:49 PM)
nice huh
westjlittle (Oct 13, 2008 4:55:35 PM)
that's were you need a TIVO. skips the commercials, watch an hour show in 40 min
westjlittle (Oct 13, 2008 4:55:43 PM)
Like it's on PBS
mommazooms (Oct 13, 2008 4:56:35 PM)
Yes! I do listen to music also... Ralph has XM Radio in his car and I can sign in on the web and listen to that too!
Jim_VA (Oct 13, 2008 4:57:11 PM)
my oldest son is a sports nut
mommazooms (Oct 13, 2008 4:58:06 PM)
I watch a bunch of shows online, they take the commercials out for the most part!
Jim_VA (Oct 13, 2008 4:58:08 PM)
neat
Jim_VA (Oct 13, 2008 4:59:35 PM)
I have audials
mommazooms (Oct 13, 2008 5:00:16 PM)
What's that?
Jim_VA (Oct 13, 2008 5:01:23 PM)
it records radio stations
mommazooms (Oct 13, 2008 5:02:23 PM)
Like podcasts?
mommazooms (Oct 13, 2008 5:03:52 PM)
I know you can get NPR shows on podcasts on iTunes...
Jim_VA (Oct 13, 2008 5:03:59 PM)
you have to to clean out the music track s
mommazooms (Oct 13, 2008 5:05:37 PM)
Ok... I'm going to go guys! Have a great week and I'll see you here next week! Take care...
westjlittle (Oct 13, 2008 5:05:47 PM)
bye
westjlittle (Oct 13, 2008 5:05:58 PM)
i'll bail too
mommazooms (Oct 13, 2008 5:06:03 PM)
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westjlittle (Oct 13, 2008 5:06:09 PM)
see ya jim
Jim_VA (Oct 13, 2008 5:06:33 PM)
ok take care
westjlittle (Oct 13, 2008 5:06:44 PM)
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Jim_VA (Oct 13, 2008 5:06:59 PM)
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