Living with ALS

DanG (Oct 12, 2008 2:20:53 PM)
(This user has entered Living with ALS)

Jim_VA (Oct 12, 2008 2:21:40 PM)
Hi Dan

DanG (Oct 12, 2008 2:21:59 PM)
Hi you doin Jim?

Jim_VA (Oct 12, 2008 2:23:01 PM)
great ty and you?

DanG (Oct 12, 2008 2:23:56 PM)
fare thee well my friend. gettin a little nip in the air, eh?

Jim_VA (Oct 12, 2008 2:25:40 PM)
lol nice here

Jim_VA (Oct 12, 2008 2:27:17 PM)
we did the ALS walk earlier

DanG (Oct 12, 2008 2:28:32 PM)
That was good Jim..Did u ride in your PWC?

Jim_VA (Oct 12, 2008 2:29:05 PM)
yes

DanG (Oct 12, 2008 2:30:42 PM)
I wish that I had of done that. Wasn't any that close though. And I didn't have any transpo.

Jim_VA (Oct 12, 2008 2:32:50 PM)
ah we try to go every year

DanG (Oct 12, 2008 2:34:59 PM)
God willing, I will Make it a point to go next year!

Jim_VA (Oct 12, 2008 2:36:14 PM)
good goal

Jim_VA (Oct 12, 2008 2:38:18 PM)
that is the only ALSA event that I attend

DanG (Oct 12, 2008 2:39:51 PM)
I used to go to some of the suppport group mtgs. but I just couldn't handle it.

Jim_VA (Oct 12, 2008 2:41:20 PM)
I went to one

DanG (Oct 12, 2008 2:43:57 PM)
mostlu women at the one I went to.

Jim_VA (Oct 12, 2008 2:46:11 PM)
I, was at the doctors friday

DanG (Oct 12, 2008 2:46:45 PM)
Why for?

Jim_VA (Oct 12, 2008 2:48:52 PM)
they have a new office in the hospital

Jim_VA (Oct 12, 2008 2:49:43 PM)
ekg & blood tests

DanG (Oct 12, 2008 2:50:16 PM)
jus routine?

Jim_VA (Oct 12, 2008 2:50:23 PM)
flu shot

Jim_VA (Oct 12, 2008 2:50:39 PM)
yes

DanG (Oct 12, 2008 2:51:10 PM)
everything o.k.?

Jim_VA (Oct 12, 2008 2:52:51 PM)
my doctor comes to the house twice a year

DanG (Oct 12, 2008 2:53:46 PM)
that is rare indeed for a doctor to do that.

Jim_VA (Oct 12, 2008 2:54:33 PM)
got ALS everything else seems ok

DanG (Oct 12, 2008 2:54:58 PM)
Did a nice walk up happen to show up in your mailbox?

Jim_VA (Oct 12, 2008 2:55:52 PM)
yes he is a good one

Jim_VA (Oct 12, 2008 2:59:02 PM)
I have not checked my mail

DanG (Oct 12, 2008 2:59:31 PM)
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DanG (Oct 12, 2008 3:06:22 PM)
(This user has entered Living with ALS)

DanG (Oct 12, 2008 3:06:38 PM)
sorry bout that

Jim_VA (Oct 12, 2008 3:07:16 PM)
The doctors nurse was at the walk

Jim_VA (Oct 12, 2008 3:07:41 PM)
wb

DanG (Oct 12, 2008 3:07:50 PM)
is he a neuro or gp or pulmon

Jim_VA (Oct 12, 2008 3:08:41 PM)
pulmonologist

DanG (Oct 12, 2008 3:09:33 PM)
what u think bout that resp. co. I was telling u bout.

Jim_VA (Oct 12, 2008 3:11:29 PM)
I would look for a different one

DanG (Oct 12, 2008 3:13:32 PM)
I should but afraid my neuro would get ticked. Having to do all that extra paperwork.

Jim_VA (Oct 12, 2008 3:14:23 PM)
and report them to the state health department

DanG (Oct 12, 2008 3:15:26 PM)
that would stir up some stuff.. could do that.. cause it just ain't right.

Jim_VA (Oct 12, 2008 3:16:08 PM)
I don't really use neuros

Jim_VA (Oct 12, 2008 3:18:09 PM)
only when my pulmonologist insists

DanG (Oct 12, 2008 3:18:17 PM)
That is all i see

Jim_VA (Oct 12, 2008 3:19:37 PM)
I would change that too

DanG (Oct 12, 2008 3:20:15 PM)
he is the only one that is in ALSA

DanG (Oct 12, 2008 3:21:09 PM)
definitely not helping me find a place to live. it is really getting to me.

Jim_VA (Oct 12, 2008 3:22:40 PM)
neuros are needed for dx

Jim_VA (Oct 12, 2008 3:23:50 PM)
you should have a pulmonologist

DanG (Oct 12, 2008 3:24:50 PM)
yes but if they write you a letter and tell you that you need to go to a nursing home or a place where I can get round the clock care then to me they should me the primary ones helping you find that place. to go. Am I right or wrong?

Jim_VA (Oct 12, 2008 3:24:55 PM)
and an ENT

Jim_VA (Oct 12, 2008 3:27:46 PM)
I would think they should

DanG (Oct 12, 2008 3:29:22 PM)
i used to have a pulmo and an ENT. Don't have either now. They both have move out of statel

Jim_VA (Oct 12, 2008 3:30:46 PM)
when you find a place you will need new doctors

Jim_VA (Oct 12, 2008 3:31:07 PM)
wow

DanG (Oct 12, 2008 3:31:47 PM)
too much for one's mind to deal with eh?!?

Jim_VA (Oct 12, 2008 3:33:56 PM)
GA health

DanG (Oct 12, 2008 3:34:49 PM)
First thing,.. got to find me a place to live. GA health is useless.

Jim_VA (Oct 12, 2008 3:35:56 PM)
I think I saw another possibility

DanG (Oct 12, 2008 3:36:03 PM)
They are the ones that told me to turn in notice here along with ALSA

DanG (Oct 12, 2008 3:37:37 PM)
what is that?

Jim_VA (Oct 12, 2008 3:38:49 PM)
I will look for it a home

DanG (Oct 12, 2008 3:44:12 PM)
dropped out back now

Jim_VA (Oct 12, 2008 3:44:29 PM)
look for the Josephine Muller Center

DanG (Oct 12, 2008 3:49:00 PM)
found the josephine miller center ..Josephine Muller Gallery

Jim_VA (Oct 12, 2008 3:51:27 PM)
i think is muller

DanG (Oct 12, 2008 3:54:46 PM)
I found something.. through NIH a 6 bed unit in Philadelphia for ALS u think that is it?

Jim_VA (Oct 12, 2008 3:58:25 PM)
probably the greater philly chapter supports it

DanG (Oct 12, 2008 3:58:45 PM)
sounds great if i could get it. Have to start with NIH tomorrow..

Jim_VA (Oct 12, 2008 3:59:38 PM)
yes do that

Jim_VA (Oct 12, 2008 4:00:29 PM)
something anyway

DanG (Oct 12, 2008 4:00:50 PM)
yes ty much Jim.

DanG (Oct 12, 2008 4:02:21 PM)
wend against better Judgment and gave notice here..

DanG (Oct 12, 2008 4:04:05 PM)
maybe i will go to national mda office and see what they have to say.

Jim_VA (Oct 12, 2008 4:04:17 PM)
are you making a list of these places

DanG (Oct 12, 2008 4:05:05 PM)
The ones we have talked about Jim? Yes, Indeedy..

Jim_VA (Oct 12, 2008 4:05:46 PM)
yes and make a record

DanG (Oct 12, 2008 4:07:01 PM)
a phone recording...not against law in georgia as long as one party consents.

Jim_VA (Oct 12, 2008 4:07:50 PM)
I would like to put the information on the website

DanG (Oct 12, 2008 4:10:13 PM)
when there is enough to put on there...sure... after all you were brains..I have to get my puter speech finished

DanG (Oct 12, 2008 4:14:07 PM)
It should be quite a interesting piece.

Jim_VA (Oct 12, 2008 4:14:41 PM)
something.like that may keep somebody from going through the same thing

Jim_VA (Oct 12, 2008 4:15:09 PM)
yes

DanG (Oct 12, 2008 4:16:22 PM)
exactly. It is hard to believe that someone has not traveled this road before!

Jim_VA (Oct 12, 2008 4:17:30 PM)
makes one wonder

Jim_VA (Oct 12, 2008 4:18:57 PM)
really a big hole in the care system

DanG (Oct 12, 2008 4:19:23 PM)
i have to buy a laptop for speech on my chair. would you recommend touch screen or just regular screen.

DanG (Oct 12, 2008 4:20:09 PM)
one that I have found not too many people care much about because they don't know what to do!

DanG (Oct 12, 2008 4:21:54 PM)
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DanG (Oct 12, 2008 4:22:24 PM)
(This user has entered Living with ALS)

DanG (Oct 12, 2008 4:22:35 PM)
sorry bout that

Jim_VA (Oct 12, 2008 4:24:32 PM)
it depends on how long you think that you will be able to use your hands and arms

Jim_VA (Oct 12, 2008 4:27:27 PM)
Jim W has a dynovox

Jim_VA (Oct 12, 2008 4:29:07 PM)
you can talk to him tomorrow afternoon

DanG (Oct 12, 2008 4:31:19 PM)
not for long at all. so touchscreen would be waste of money and some functionality.

Jim_VA (Oct 12, 2008 4:35:23 PM)
I don't know how they work

DanG (Oct 12, 2008 4:37:24 PM)
did you have someone come in and set up all of your comm gear?

Jim_VA (Oct 12, 2008 4:38:27 PM)
I type messages

Jim_VA (Oct 12, 2008 4:39:16 PM)
no

DanG (Oct 12, 2008 4:40:55 PM)
have you seen these littlle ultro mini pc's? They sure would take up less room on wheel chaiir.

Jim_VA (Oct 12, 2008 4:41:40 PM)
it is all on a hospital table

Jim_VA (Oct 12, 2008 4:43:23 PM)
yes they would

DanG (Oct 12, 2008 4:43:38 PM)
yes is saw it on some pix u sent me.

Jim_VA (Oct 12, 2008 4:45:03 PM)
they just; position it over my bed

Jim_VA (Oct 12, 2008 4:46:57 PM)
pc stays on it

DanG (Oct 12, 2008 4:47:53 PM)
good idea..

Jim_VA (Oct 12, 2008 4:50:49 PM)
my next one will be a desktop

DanG (Oct 12, 2008 4:51:46 PM)
WHy you say that Jim...easier to maintain? less maintenance?

Jim_VA (Oct 12, 2008 4:53:21 PM)
they are developing wireless monitors

DanG (Oct 12, 2008 4:55:35 PM)
I have seen those. The ones I saw are bluetooth. They have them now. Pretty neat.

DanG (Oct 12, 2008 4:57:19 PM)
Desktops are easier to maintain, they run cooler, require less maintenance and they are not considered a throw away item like mose lap tops are.. Plus you can do so much more with them..

Jim_VA (Oct 12, 2008 4:57:35 PM)
just a monitor on the table

DanG (Oct 12, 2008 4:57:39 PM)
and they are cheaper..

DanG (Oct 12, 2008 4:58:03 PM)
Good Idea... How bout your chair?

DanG (Oct 12, 2008 4:58:24 PM)
How would u handle that?

Jim_VA (Oct 12, 2008 4:59:33 PM)
yes all of those things

Jim_VA (Oct 12, 2008 5:00:17 PM)
keep this one

DanG (Oct 12, 2008 5:01:12 PM)
oh of course....duh...me....

DanG (Oct 12, 2008 5:01:52 PM)
well it be 6...better get off of here and do a can of brusky...

Jim_VA (Oct 12, 2008 5:02:48 PM)
ok take care ttyl

DanG (Oct 12, 2008 5:02:59 PM)
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Jim_VA (Oct 12, 2008 5:04:28 PM)
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