Living with ALS 2

DanG (Nov 10, 2008 8:38:37 PM)
(This user has entered Living with ALS 2)

DanG (Nov 10, 2008 8:39:55 PM)
HI jim

Jim_VA (Nov 10, 2008 8:39:58 PM)
/Hi Dan

DanG (Nov 10, 2008 8:41:08 PM)
I APOlOGIZE - i fell asleep during the earlier chat

Jim_VA (Nov 10, 2008 8:41:40 PM)
how do you like the place

Jim_VA (Nov 10, 2008 8:43:47 PM)
no problem I have done the same thing

DanG (Nov 10, 2008 8:44:42 PM)
its ok. semi private rooms, modern equipment, all age groups, 79 be VENT UNIT Long term care facility. The lady that had lived here for 24 yrs. passed last night.

Jim_VA (Nov 10, 2008 8:45:59 PM)
where is Mt Vernon

DanG (Nov 10, 2008 8:46:43 PM)
Kentucky. right off I 75

Jim_VA (Nov 10, 2008 8:46:56 PM)
that sounds great

DanG (Nov 10, 2008 8:47:44 PM)
it is just takes a lot of getting used to a different life style.

Jim_VA (Nov 10, 2008 8:48:17 PM)
east or west ky

Jim_VA (Nov 10, 2008 8:48:55 PM)
I am sure

DanG (Nov 10, 2008 8:49:21 PM)
about 4 hours nort of knoxville TN

DanG (Nov 10, 2008 8:49:49 PM)
I GUESS E. KENTUCKY

Jim_VA (Nov 10, 2008 8:49:57 PM)
ah

Jim_VA (Nov 10, 2008 8:51:05 PM)
did your sis find it

DanG (Nov 10, 2008 8:51:49 PM)
16 days in ICU was rough ...... the social worker at the hospital where i was in ICU FOUND IT.

Jim_VA (Nov 10, 2008 8:52:30 PM)
nice

Jim_VA (Nov 10, 2008 8:53:57 PM)
yes I have been in the ICU

Jim_VA (Nov 10, 2008 8:54:34 PM)
about 5 weeks

DanG (Nov 10, 2008 8:55:13 PM)
Went in with pneumonia, came out with UTI, sepsis, croneal eye infection, I WAS ALMOST a goner. LIKE I SAID lost 20 lbs.

Jim_VA (Nov 10, 2008 8:56:37 PM)
are they quick responding

DanG (Nov 10, 2008 8:57:12 PM)
how are you and the family? Yes under 5 mins. at most.

Jim_VA (Nov 10, 2008 8:57:37 PM)
wow bummer huh

Jim_VA (Nov 10, 2008 8:58:13 PM)
that is good

DanG (Nov 10, 2008 8:58:46 PM)
they have a day room with 3 wide screen tvs. 2 complete WII SYSTEMS.

Jim_VA (Nov 10, 2008 8:59:14 PM)
we are fine ty

Jim_VA (Nov 10, 2008 9:00:05 PM)
neat

Jim_VA (Nov 10, 2008 9:01:38 PM)
are you gaining the weight back

DanG (Nov 10, 2008 9:03:06 PM)
yeah they are pumping me full of high protein and formula with extra stuff in it.

Jim_VA (Nov 10, 2008 9:03:46 PM)
beans and taters

DanG (Nov 10, 2008 9:03:46 PM)
i got a cuff now with 10 cc of air.

DanG (Nov 10, 2008 9:04:00 PM)
I wish!!!!

Jim_VA (Nov 10, 2008 9:05:01 PM)
that certainly sounds better

Jim_VA (Nov 10, 2008 9:06:03 PM)
what size tube

DanG (Nov 10, 2008 9:06:03 PM)
more in line with the norm. they have one other als patient here. haven't met him.

DanG (Nov 10, 2008 9:06:27 PM)
still a 6 DIC

Jim_VA (Nov 10, 2008 9:07:43 PM)
ah what are most in for

DanG (Nov 10, 2008 9:09:20 PM)
they take all my ssi and disability but $40 monrh.

Jim_VA (Nov 10, 2008 9:09:25 PM)
DMD?

DanG (Nov 10, 2008 9:09:48 PM)
what is DMD

Jim_VA (Nov 10, 2008 9:12:59 PM)
a very bad type of muscular distrophy

Jim_VA (Nov 10, 2008 9:14:13 PM)
strikes youngsters

DanG (Nov 10, 2008 9:14:16 PM)
you got it my friend. i am surprized there are not more als patients here

DanG (Nov 10, 2008 9:14:58 PM)
i think there are some Duchenne MD Cases here.

Jim_VA (Nov 10, 2008 9:15:54 PM)
it is very bad

DanG (Nov 10, 2008 9:17:00 PM)
Yes I have read some about it. It is sad for adults to get some type of MD but with kids, it is a real heart breaker.

Jim_VA (Nov 10, 2008 9:18:01 PM)
how are those KY nurses

DanG (Nov 10, 2008 9:18:25 PM)
the would not let me bring my tower pc up here.....had to go buy me a laptop.

Jim_VA (Nov 10, 2008 9:18:43 PM)
it sure is

Jim_VA (Nov 10, 2008 9:19:21 PM)
that was nice

DanG (Nov 10, 2008 9:19:27 PM)
the KY NURSES are "BEAUTIFUL" I fall in love every time I MEET ONE!1!

Jim_VA (Nov 10, 2008 9:20:00 PM)
.lol brt

Jim_VA (Nov 10, 2008 9:21:10 PM)
are they there regularly

DanG (Nov 10, 2008 9:21:57 PM)
Yes, they work 3 12 hour shifts and 4 days off.

Jim_VA (Nov 10, 2008 9:23:04 PM)
I don't like that in the ICU

DanG (Nov 10, 2008 9:25:01 PM)
no, it sux big time!!!! and they are mean

Jim_VA (Nov 10, 2008 9:25:09 PM)
I had one for 3 days and never see them again

Jim_VA (Nov 10, 2008 9:25:28 PM)
lol

DanG (Nov 10, 2008 9:26:37 PM)
I got my chair just in time....trying to find a table for it now for my laptop.

Jim_VA (Nov 10, 2008 9:27:24 PM)
you find a good one and want to keep them

Jim_VA (Nov 10, 2008 9:27:44 PM)
nice

DanG (Nov 10, 2008 9:28:29 PM)
You know any w/c table manufacturers?

Jim_VA (Nov 10, 2008 9:29:32 PM)
my son has the arms off mine]

DanG (Nov 10, 2008 9:30:06 PM)
you don't use one/

Jim_VA (Nov 10, 2008 9:31:41 PM)
there is one that slides under your seat

Jim_VA (Nov 10, 2008 9:32:42 PM)
I have 2 different ones

Jim_VA (Nov 10, 2008 9:34:22 PM)
I think one is Permobil

DanG (Nov 10, 2008 9:35:04 PM)
I seen one that will pull up from chair between arm rest and chair

Jim_VA (Nov 10, 2008 9:36:32 PM)
I will have to check the other

DanG (Nov 10, 2008 9:40:23 PM)
i better sign out b 4 i fall asleep again. STAY IN TOUCH my email is stil dan_garrett@mac.com

Jim_VA (Nov 10, 2008 9:41:12 PM)
ok take care

DanG (Nov 10, 2008 9:41:25 PM)
GN

DanG (Nov 10, 2008 9:41:41 PM)
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