Living with ALS
Jim_VA (Dec 3, 2007 3:02:36 PM)
Jim_VA (Dec 3, 2007 3:08:15 PM)
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Jim_VA (Dec 3, 2007 3:09:30 PM)
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westjlittle (Dec 3, 2007 3:47:28 PM)
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westjlittle (Dec 3, 2007 3:47:46 PM)
Hi Jim ... its been a while
Jim_VA (Dec 3, 2007 3:48:37 PM)
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Jim_VA (Dec 3, 2007 4:05:32 PM)
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Jim_VA (Dec 3, 2007 4:05:54 PM)
hi Jim
westjlittle (Dec 3, 2007 4:06:14 PM)
Hello... You logged off right as I came on.
Jim_VA (Dec 3, 2007 4:06:38 PM)
got zapped
westjlittle (Dec 3, 2007 4:06:55 PM)
Anything new? I have been meaning to attend but busy at work. I went to the ALS-TDI research seminar in Boston. I was interesting.
Jim_VA (Dec 3, 2007 4:07:25 PM)
just now got back on
Jim_VA (Dec 3, 2007 4:07:52 PM)
i bet it was
westjlittle (Dec 3, 2007 4:08:30 PM)
I found the most interesting thing was a presentation from the Stem Cell Institute in CA. They damaged a mouse spinal cord, grew some neuron cells, inserted them in the damaged section and the mouse could walk agian.
westjlittle (Dec 3, 2007 4:09:25 PM)
However, I left there feeling that the researchers will be concentrating on spinal injuries before regrowing the nerves we need.
Jim_VA (Dec 3, 2007 4:09:41 PM)
My vard went bad and I formatted C: so I have been down
Jim_VA (Dec 3, 2007 4:10:12 PM)
interesting
Jim_VA (Dec 3, 2007 4:10:46 PM)
vcard
westjlittle (Dec 3, 2007 4:12:19 PM)
We also saw a presentation on the Diaphram pacing device. I think that device will replace trach in spinal injuries people very soon. We of SOL since eventually our nerves disconnect from the muscle. There is nothing for the pacer to excite.
westjlittle (Dec 3, 2007 4:13:07 PM)
The tour of the ALS-TDI facilties was nice. I left there feeling that everyone involved is working very hard but on limited budget.
Jim_VA (Dec 3, 2007 4:13:19 PM)
I got your note on adult stem cells just haven't responded
westjlittle (Dec 3, 2007 4:13:41 PM)
I thought that report was very exciting. What is your take on it?
Jim_VA (Dec 3, 2007 4:14:23 PM)
yes I am glad to hear about ALDS-TDI
Jim_VA (Dec 3, 2007 4:16:05 PM)
Oh I think so too as long as they don't divert funds from embryonic research
Jim_VA (Dec 3, 2007 4:17:33 PM)
I read some different opinions about that discovery
westjlittle (Dec 3, 2007 4:17:42 PM)
I assume you get a flu shot but do you also get a Pneumonia shot?
Jim_VA (Dec 3, 2007 4:17:58 PM)
yes
westjlittle (Dec 3, 2007 4:18:41 PM)
Have you been following the discussoin on ALSadvocacy on having a ALS day?
Jim_VA (Dec 3, 2007 4:19:12 PM)
going to Florida in January
westjlittle (Dec 3, 2007 4:19:40 PM)
Vacation or the Golf event?
Jim_VA (Dec 3, 2007 4:20:06 PM)
no pc has been down
westjlittle (Dec 3, 2007 4:21:00 PM)
Yesterday, they were talking about an ALS-TDI golf event in FL
Jim_VA (Dec 3, 2007 4:21:13 PM)
wife bought a condo in Daytona shores
westjlittle (Dec 3, 2007 4:21:31 PM)
Are you moving then?
Jim_VA (Dec 3, 2007 4:22:20 PM)
so we will go for 2 1/2 months
Jim_VA (Dec 3, 2007 4:22:45 PM)
no not moving
Jim_VA (Dec 3, 2007 4:23:58 PM)
what is with the advocacy days
westjlittle (Dec 3, 2007 4:24:49 PM)
Someone had an idea that we should promote a day like "World Aids Day" but for ALS
westjlittle (Dec 3, 2007 4:25:26 PM)
The discussion has ranged from having the Yankees have an event for Lou.. to the disfunctional relationship between ALSA and MDA-ALS
Jim_VA (Dec 3, 2007 4:25:46 PM)
aids gets all the funding
Jim_VA (Dec 3, 2007 4:26:31 PM)
I doubt that will come about
Jim_VA (Dec 3, 2007 4:27:45 PM)
sort of a my turf thing
westjlittle (Dec 3, 2007 4:27:52 PM)
I think the idea was to find another way to raise awareness. My first reaction is that MDA already has Labor day locked up.
westjlittle (Dec 3, 2007 4:29:04 PM)
Oh I agree completing. Having asked both sets of support people here in Denver... "Whay don't you coordinate more with ALSA" Deer in headlights reaction
westjlittle (Dec 3, 2007 4:29:43 PM)
We have competing suport groups, loan closets, educational seminars. Its a duplication of effort and wastes money.
Jim_VA (Dec 3, 2007 4:30:50 PM)
advocacy days is a nice get together for PALS butI thought it is a legislative waste
westjlittle (Dec 3, 2007 4:31:37 PM)
I believe that MDA has 4-6 in denver. While ALSA has 5.
Jim_VA (Dec 3, 2007 4:31:56 PM)
oh yes I am sure of that
Jim_VA (Dec 3, 2007 4:32:03 PM)
wow
westjlittle (Dec 3, 2007 4:32:13 PM)
I don't thnk the event they had in mind was for legislation
westjlittle (Dec 3, 2007 4:32:28 PM)
You don't have that many in DC area
westjlittle (Dec 3, 2007 4:32:30 PM)
?
Jim_VA (Dec 3, 2007 4:33:33 PM)
oh there is a great ALSA local
Jim_VA (Dec 3, 2007 4:33:53 PM)
not much MDA
Jim_VA (Dec 3, 2007 4:34:23 PM)
there are many support groups
westjlittle (Dec 3, 2007 4:34:28 PM)
I find the MDA spents a lot of time and money on the MDA clinic at CU Hospital. The ALSA people are more 'practical' but 1/2 of them are involved due to family ALS death.
Jim_VA (Dec 3, 2007 4:34:34 PM)
I am not into that very much
westjlittle (Dec 3, 2007 4:34:53 PM)
I assume you mean the support groups?
westjlittle (Dec 3, 2007 4:35:38 PM)
I went to support groups for a few months and found them to be too depressing. Being only 42, I felt I was in the wrong demographic for the group.
Jim_VA (Dec 3, 2007 4:36:15 PM)
yes the support groups send people here
Jim_VA (Dec 3, 2007 4:36:56 PM)
I don't go much
Jim_VA (Dec 3, 2007 4:38:23 PM)
even some of the home medical companies send people here
aeras (Dec 3, 2007 4:38:23 PM)
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Jim_VA (Dec 3, 2007 4:38:38 PM)
hi Al
aeras (Dec 3, 2007 4:38:48 PM)
hi jim
westjlittle (Dec 3, 2007 4:38:50 PM)
Hi Al I'm jim also
aeras (Dec 3, 2007 4:39:10 PM)
hello jim 2
westjlittle (Dec 3, 2007 4:39:20 PM)
call me west probably easier
aeras (Dec 3, 2007 4:39:32 PM)
ok that works
aeras (Dec 3, 2007 4:40:08 PM)
how is everyone today
westjlittle (Dec 3, 2007 4:40:44 PM)
I'm doing fine but struggling through my second cold of the season.
Jim_VA (Dec 3, 2007 4:40:51 PM)
I think people have too much faith in the ALS Registry
aeras (Dec 3, 2007 4:41:08 PM)
I don't know if Ellen told you Or myself, that I had my Thyroid Gland removed
Jim_VA (Dec 3, 2007 4:41:30 PM)
great Al
aeras (Dec 3, 2007 4:41:44 PM)
I am not looking foward to any of those this season
westjlittle (Dec 3, 2007 4:42:11 PM)
My kids bring it home from school. Not much I can do about it.
Jim_VA (Dec 3, 2007 4:42:43 PM)
I don't remember her saying that
westjlittle (Dec 3, 2007 4:42:55 PM)
I'm fairly early into my diagnosis... having a cold makes me very concerned about later.
aeras (Dec 3, 2007 4:44:44 PM)
well I've been off of my hormones from the Thyroid for about 2or3 mo. and just was given a scrp for them a week ago
aeras (Dec 3, 2007 4:45:25 PM)
my breathing now leaves me cocerned
Jim_VA (Dec 3, 2007 4:45:26 PM)
I think my Dad had his Thyroid removed
aeras (Dec 3, 2007 4:45:55 PM)
well that will take the wind out of your sails
aeras (Dec 3, 2007 4:46:21 PM)
until you get the hormones so
Jim_VA (Dec 3, 2007 4:46:29 PM)
I would like to treat that vest
aeras (Dec 3, 2007 4:46:42 PM)
i am finally getting some strength back
Jim_VA (Dec 3, 2007 4:46:54 PM)
good
aeras (Dec 3, 2007 4:47:17 PM)
did some dishes today
Jim_VA (Dec 3, 2007 4:47:33 PM)
oops
aeras (Dec 3, 2007 4:47:41 PM)
maybe some cooking tomorrow
Jim_VA (Dec 3, 2007 4:48:29 PM)
no laundry comes next
aeras (Dec 3, 2007 4:48:38 PM)
oh
aeras (Dec 3, 2007 4:48:46 PM)
lol
Jim_VA (Dec 3, 2007 4:48:55 PM)
;o)
aeras (Dec 3, 2007 4:49:14 PM)
;-)
Jim_VA (Dec 3, 2007 4:49:40 PM)
I use to cook a lot
aeras (Dec 3, 2007 4:50:06 PM)
:^) I went to school for 4 years for that
Jim_VA (Dec 3, 2007 4:50:21 PM)
nice
aeras (Dec 3, 2007 4:51:25 PM)
both me and the wife use to do cake decorating as well
westjlittle (Dec 3, 2007 4:51:26 PM)
Where are you from AL?
Jim_VA (Dec 3, 2007 4:51:27 PM)
I learned the hard way
aeras (Dec 3, 2007 4:51:50 PM)
I'm from Ct. and live in NC
westjlittle (Dec 3, 2007 4:52:02 PM)
I grew up in Cary NC
westjlittle (Dec 3, 2007 4:52:13 PM)
Now I'm in Denver
aeras (Dec 3, 2007 4:52:31 PM)
NC or Col
westjlittle (Dec 3, 2007 4:52:38 PM)
Colorado
aeras (Dec 3, 2007 4:52:46 PM)
ok
aeras (Dec 3, 2007 4:52:55 PM)
Denver NC
aeras (Dec 3, 2007 4:53:09 PM)
thats just up the road a ways
Jim_VA (Dec 3, 2007 4:53:15 PM)
we had a saying "tastes like sh-- but it's good"
westjlittle (Dec 3, 2007 4:53:38 PM)
Are you talking about coors?
Jim_VA (Dec 3, 2007 4:53:53 PM)
my cooking
aeras (Dec 3, 2007 4:54:05 PM)
we had had 1 that goes looks like sh-- but tastes good
Jim_VA (Dec 3, 2007 4:54:21 PM)
lol
aeras (Dec 3, 2007 4:54:24 PM)
lol
Jim_VA (Dec 3, 2007 4:55:11 PM)
such fun
aeras (Dec 3, 2007 4:56:02 PM)
do you cook West
Jim_VA (Dec 3, 2007 4:56:07 PM)
I did a lot of deer - venison
aeras (Dec 3, 2007 4:56:33 PM)
I haven't done much game cooking
Jim_VA (Dec 3, 2007 4:56:44 PM)
and wild turkeys
aeras (Dec 3, 2007 4:56:58 PM)
rabbit and squirrel
Jim_VA (Dec 3, 2007 4:57:29 PM)
not much rabbit
aeras (Dec 3, 2007 4:57:52 PM)
tastes like chicken
Jim_VA (Dec 3, 2007 4:58:07 PM)
we parboiled squirrels
aeras (Dec 3, 2007 4:58:27 PM)
to tenderize them
Jim_VA (Dec 3, 2007 4:58:33 PM)
so does the spotted owl
Jim_VA (Dec 3, 2007 4:58:43 PM)
yes
Jim_VA (Dec 3, 2007 4:59:48 PM)
honkers and ducks
Jim_VA (Dec 3, 2007 5:00:21 PM)
snow geese
Jim_VA (Dec 3, 2007 5:01:27 PM)
had a lot of elk too
Jim_VA (Dec 3, 2007 5:14:13 PM)
got them below Pegosa Springs Jim
Jim_VA (Dec 3, 2007 5:17:25 PM)
what was your specialty Al
aeras (Dec 3, 2007 5:17:54 PM)
Hotel reastaurant cooking
Jim_VA (Dec 3, 2007 5:18:13 PM)
wow
Jim_VA (Dec 3, 2007 5:18:49 PM)
I don't think I could do that
aeras (Dec 3, 2007 5:19:02 PM)
actually worked for a while in a night club
Jim_VA (Dec 3, 2007 5:19:34 PM)
I make too much as a mess
aeras (Dec 3, 2007 5:20:59 PM)
as do
Jim_VA (Dec 3, 2007 5:21:03 PM)
my wife worked in a night club for a while
aeras (Dec 3, 2007 5:21:05 PM)
i
Jim_VA (Dec 3, 2007 5:21:16 PM)
lol
aeras (Dec 3, 2007 5:21:48 PM)
the idea is to have the help to clean up for you
aeras (Dec 3, 2007 5:21:57 PM)
lol
westjlittle (Dec 3, 2007 5:22:42 PM)
Guys I'm logging off ... have a great day - jim
westjlittle (Dec 3, 2007 5:22:44 PM)
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Jim_VA (Dec 3, 2007 5:23:11 PM)
lol my wife doesn't like to clean up after me
aeras (Dec 3, 2007 5:23:20 PM)
no chance to say good by
aeras (Dec 3, 2007 5:23:53 PM)
I think he got bored
Jim_VA (Dec 3, 2007 5:24:17 PM)
na he was probably at work
aeras (Dec 3, 2007 5:24:41 PM)
oh he still works?
Jim_VA (Dec 3, 2007 5:25:50 PM)
yes and it is probably 330 in Denver
aeras (Dec 3, 2007 5:26:06 PM)
yeah it would be
aeras (Dec 3, 2007 5:26:18 PM)
mountain time
Jim_VA (Dec 3, 2007 5:27:08 PM)
he just moved into a more accessible house
aeras (Dec 3, 2007 5:27:58 PM)
do you know what he does for work
Jim_VA (Dec 3, 2007 5:28:53 PM)
some kind of electronics systems
aeras (Dec 3, 2007 5:29:07 PM)
ok
aeras (Dec 3, 2007 5:29:32 PM)
did he say how long he had been dx
aeras (Dec 3, 2007 5:29:55 PM)
he said it was recent I know
Jim_VA (Dec 3, 2007 5:30:49 PM)
I can't remember but about a year I think
aeras (Dec 3, 2007 5:31:56 PM)
you gonna be back later
Jim_VA (Dec 3, 2007 5:32:23 PM)
I think that he has been coming here for about 8 months
aeras (Dec 3, 2007 5:33:04 PM)
then that makes me the newbe
Jim_VA (Dec 3, 2007 5:33:17 PM)
yes unless I get shanghaied
Jim_VA (Dec 3, 2007 5:33:27 PM)
lol
aeras (Dec 3, 2007 5:33:30 PM)
lol
Jim_VA (Dec 3, 2007 5:34:02 PM)
we were all there once
aeras (Dec 3, 2007 5:34:15 PM)
yup
Jim_VA (Dec 3, 2007 5:34:49 PM)
I will try to get Dick to come back
aeras (Dec 3, 2007 5:35:15 PM)
who is dick
aeras (Dec 3, 2007 5:35:29 PM)
I don't think I met him yet
Jim_VA (Dec 3, 2007 5:36:12 PM)
he is in Kentucky and was a regular until a couple of months ago
aeras (Dec 3, 2007 5:36:40 PM)
has he taken a bad turn
Jim_VA (Dec 3, 2007 5:37:11 PM)
70 and his wife is almost blind
Jim_VA (Dec 3, 2007 5:37:25 PM)
I don't think so
aeras (Dec 3, 2007 5:37:31 PM)
oh
Jim_VA (Dec 3, 2007 5:38:43 PM)
he is a slow progression
aeras (Dec 3, 2007 5:38:59 PM)
that is good
Jim_VA (Dec 3, 2007 5:39:24 PM)
I think that he has taken on a lot of the housework
aeras (Dec 3, 2007 5:39:45 PM)
I can see that
Jim_VA (Dec 3, 2007 5:40:00 PM)
that is tough with ALS
aeras (Dec 3, 2007 5:40:14 PM)
to be sure
Jim_VA (Dec 3, 2007 5:40:39 PM)
he is in a wheelchair
aeras (Dec 3, 2007 5:41:16 PM)
that makes it a little more difficult
Jim_VA (Dec 3, 2007 5:42:16 PM)
I met him at a fundraiser last year
Jim_VA (Dec 3, 2007 5:43:40 PM)
we were chatting here long before the fundraiser
aeras (Dec 3, 2007 5:44:03 PM)
oh
Jim_VA (Dec 3, 2007 5:44:55 PM)
It is interesting to meet people that you chat with
aeras (Dec 3, 2007 5:45:09 PM)
I agree
Jim_VA (Dec 3, 2007 5:46:18 PM)
there were 5 or 6 of us there
aeras (Dec 3, 2007 5:46:44 PM)
me and the wife were in a chat room with some people we met doing geneology and we did some meets 3 years in arow, we keep in touch still
Jim_VA (Dec 3, 2007 5:47:14 PM)
neat
Jim_VA (Dec 3, 2007 5:47:59 PM)
I hope to meet some people in Florida
aeras (Dec 3, 2007 5:49:16 PM)
we have family there
Jim_VA (Dec 3, 2007 5:50:13 PM)
there are a few PALS in the area
Jim_VA (Dec 3, 2007 5:50:27 PM)
where
aeras (Dec 3, 2007 5:50:35 PM)
Fla
Jim_VA (Dec 3, 2007 5:50:47 PM)
ah
aeras (Dec 3, 2007 5:51:07 PM)
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aeras (Dec 3, 2007 5:51:29 PM)
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Jim_VA (Dec 3, 2007 5:51:50 PM)
well it is time to go wb
aeras (Dec 3, 2007 5:52:05 PM)
I was booted early
aeras (Dec 3, 2007 5:52:28 PM)
we still have 15 min
Jim_VA (Dec 3, 2007 5:52:29 PM)
I will send dick a note
aeras (Dec 3, 2007 5:53:10 PM)
they don't boot uaually til 15 after
Jim_VA (Dec 3, 2007 5:53:17 PM)
see if he will comeback
aeras (Dec 3, 2007 5:53:39 PM)
I hope to meet him
Jim_VA (Dec 3, 2007 5:54:04 PM)
yes something like that
aeras (Dec 3, 2007 5:54:24 PM)
talk with you later I have nature calling
Jim_VA (Dec 3, 2007 5:54:30 PM)
he is a good guy
Jim_VA (Dec 3, 2007 5:54:46 PM)
ok see ya
Jim_VA (Dec 3, 2007 5:54:57 PM)
later
aeras (Dec 3, 2007 5:55:00 PM)
i will take your word for it
aeras (Dec 3, 2007 5:55:09 PM)
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Jim_VA (Dec 3, 2007 5:55:13 PM)
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