Living with ALS

marcolopez (Sep 21, 2008 1:51:19 PM)
(This user has left DigiChat)

Jim_VA (Sep 21, 2008 2:16:12 PM)
(This user has entered Living with ALS)

Jim_VA (Sep 21, 2008 2:17:08 PM)
Hi

DanG (Sep 21, 2008 2:40:57 PM)
(This user has entered Living with ALS)

Jim_VA (Sep 21, 2008 2:41:13 PM)
Hi

DanG (Sep 21, 2008 2:41:40 PM)
JIM is this you!

Jim_VA (Sep 21, 2008 2:42:03 PM)
yep

Jim_VA (Sep 21, 2008 2:42:37 PM)
how are you

DanG (Sep 21, 2008 2:44:14 PM)
It is really great to hear from you. haven't seen you on messesngers in a while. i be hangin on. suppose to move to that nursing home next month

Jim_VA (Sep 21, 2008 2:45:12 PM)
did you get in a good place ah

Jim_VA (Sep 21, 2008 2:46:29 PM)
yes I haven't been on much

DanG (Sep 21, 2008 2:46:39 PM)
no--just that 1 place in SC that would take vent anna marie

DanG (Sep 21, 2008 2:47:02 PM)
$250//day

Jim_VA (Sep 21, 2008 2:47:33 PM)
ugh

DanG (Sep 21, 2008 2:48:57 PM)
sold my house though had to give it away for what i paid 4 it

DanG (Sep 21, 2008 2:49:26 PM)
didnt lose though

Jim_VA (Sep 21, 2008 2:49:29 PM)
that is criminal

DanG (Sep 21, 2008 2:50:32 PM)
how u been. r u in fla?

Jim_VA (Sep 21, 2008 2:50:49 PM)
that is a shame

Jim_VA (Sep 21, 2008 2:52:05 PM)
no probably between Christmas and NY

DanG (Sep 21, 2008 2:53:16 PM)
now good time 2 go

Jim_VA (Sep 21, 2008 2:53:49 PM)
might stay a while

DanG (Sep 21, 2008 2:54:14 PM)
has your health been stable?

Jim_VA (Sep 21, 2008 2:55:37 PM)
yes but wife likes Christina here

Jim_VA (Sep 21, 2008 2:56:33 PM)
little progression

Jim_VA (Sep 21, 2008 2:56:44 PM)
you

DanG (Sep 21, 2008 2:58:37 PM)
not able to transfer, bathe, or dress myself anymore. Pneumonia about every 6 weeks.

Jim_VA (Sep 21, 2008 2:59:45 PM)
mostly in the face

DanG (Sep 21, 2008 3:00:37 PM)
my face is all droopy looking.

Jim_VA (Sep 21, 2008 3:00:55 PM)
bummer,

Jim_VA (Sep 21, 2008 3:01:42 PM)
i have never had pneumonia

Jim_VA (Sep 21, 2008 3:02:17 PM)
lucky huh

DanG (Sep 21, 2008 3:02:40 PM)
that is rare with vent what b secret

Jim_VA (Sep 21, 2008 3:04:47 PM)
yes I wishI knew

DanG (Sep 21, 2008 3:05:17 PM)
u suction lot

Jim_VA (Sep 21, 2008 3:05:57 PM)
minocycline maby

Jim_VA (Sep 21, 2008 3:06:55 PM)
it varies

DanG (Sep 21, 2008 3:07:40 PM)
had 2 quit all prescriptions..no more insurance. quit hospice

Jim_VA (Sep 21, 2008 3:08:22 PM)
I do extra stuff

DanG (Sep 21, 2008 3:09:12 PM)
like what if u dont mind asking

Jim_VA (Sep 21, 2008 3:10:23 PM)
I would get back on them

Jim_VA (Sep 21, 2008 3:11:30 PM)
I clear the cuff before bed

DanG (Sep 21, 2008 3:11:55 PM)
wont take patients on vent anymore or else I would. Had to drop them to get pacemaker changed no hospice will

Jim_VA (Sep 21, 2008 3:13:30 PM)
I also do a breathing treatment once a week

DanG (Sep 21, 2008 3:13:58 PM)
nebuulizer:?

Jim_VA (Sep 21, 2008 3:15:16 PM)
cough assist every night before bed - yes

Jim_VA (Sep 21, 2008 3:16:32 PM)
my cough assist is maxed out

DanG (Sep 21, 2008 3:17:42 PM)
i cnt get that thing 2 work. donthave very good rt's. never once been 2 c me. jus ships supplies and circuits

Jim_VA (Sep 21, 2008 3:18:55 PM)
I will do a paper on it

Jim_VA (Sep 21, 2008 3:19:48 PM)
we don't see that guy either

DanG (Sep 21, 2008 3:20:41 PM)
rhought u had a good resp therapist?

Jim_VA (Sep 21, 2008 3:20:59 PM)
he is different from the vent people

DanG (Sep 21, 2008 3:23:07 PM)
dont u have r/t's come 2 c u

Jim_VA (Sep 21, 2008 3:23:49 PM)
my original rt is managing a home medical supply store

Jim_VA (Sep 21, 2008 3:24:35 PM)
yes they come by

DanG (Sep 21, 2008 3:24:55 PM)
r u on hospice

Jim_VA (Sep 21, 2008 3:25:31 PM)
even him

Jim_VA (Sep 21, 2008 3:25:40 PM)
no

DanG (Sep 21, 2008 3:27:42 PM)
they r pain in rear..just want 2 hurry up and kill u with dope and no care thewere charging medicare $4000/month.

Jim_VA (Sep 21, 2008 3:27:47 PM)
I don't know anything about hospice

Jim_VA (Sep 21, 2008 3:28:18 PM)
wow

DanG (Sep 21, 2008 3:29:06 PM)
where is everybody

Jim_VA (Sep 21, 2008 3:30:53 PM)
don't have many sundays

DanG (Sep 21, 2008 3:31:43 PM)
football & family i guess

Jim_VA (Sep 21, 2008 3:32:51 PM)
actually 250 a day is cheap

Jim_VA (Sep 21, 2008 3:33:32 PM)
probably so

DanG (Sep 21, 2008 3:34:32 PM)
no rooms though. all vent patients -12- r jus n big room

Jim_VA (Sep 21, 2008 3:35:48 PM)
they get 1000 a day here

Jim_VA (Sep 21, 2008 3:36:18 PM)
I see

DanG (Sep 21, 2008 3:37:01 PM)
this place is not that great at all.

Jim_VA (Sep 21, 2008 3:37:05 PM)
the old ward room

DanG (Sep 21, 2008 3:37:46 PM)
how r ur boys

Jim_VA (Sep 21, 2008 3:38:30 PM)
I don't know anything about this place

Jim_VA (Sep 21, 2008 3:39:47 PM)
great ty your daughter's?

Jim_VA (Sep 21, 2008 3:40:55 PM)
Andy made Chief

DanG (Sep 21, 2008 3:41:56 PM)
thats great. how longhe been in

DanG (Sep 21, 2008 3:43:32 PM)
eldest made 1st class..youngest is a jr in college

Jim_VA (Sep 21, 2008 3:43:53 PM)
he has about 8 years active duty

Jim_VA (Sep 21, 2008 3:44:16 PM)
nice

DanG (Sep 21, 2008 3:44:34 PM)
thats not long to make chief

Jim_VA (Sep 21, 2008 3:46:04 PM)
my oldest is trying to retire from Verizon

Jim_VA (Sep 21, 2008 3:46:52 PM)
and go teaching

Jim_VA (Sep 21, 2008 3:49:45 PM)
he is getting a PhD

Jim_VA (Sep 21, 2008 4:09:07 PM)
I will do a paper on what I do before bed and send you a copy

DanG (Sep 21, 2008 4:09:28 PM)
(This user has left DigiChat)

DanG (Sep 21, 2008 4:11:22 PM)
(This user has entered Living with ALS)

DanG (Sep 21, 2008 4:11:49 PM)
got disconnected and locked oot

Jim_VA (Sep 21, 2008 4:11:57 PM)
w b

DanG (Sep 21, 2008 4:12:45 PM)
anyway, u have a lot 2 b proud and thankful for with your boys!

Jim_VA (Sep 21, 2008 4:14:39 PM)
I will do it paper on what I do before bed and send you a copy

DanG (Sep 21, 2008 4:15:26 PM)
dan_garrett@mac.com Thank You Jim!

Jim_VA (Sep 21, 2008 4:15:27 PM)
yes they are good

DanG (Sep 21, 2008 4:16:20 PM)
do u hav 2 suction machines, (one portable)?

Jim_VA (Sep 21, 2008 4:16:53 PM)
yes

DanG (Sep 21, 2008 4:17:34 PM)
is the other one just a table top or what?

Jim_VA (Sep 21, 2008 4:19:54 PM)
yes like the doctors have

Jim_VA (Sep 21, 2008 4:23:39 PM)
you should use yahoo e-mail

Jim_VA (Sep 21, 2008 4:24:37 PM)
It does not change

e-m (Sep 21, 2008 4:52:44 PM)
(This user has entered Living with ALS)

e-m (Sep 21, 2008 4:53:08 PM)
hi

DanG (Sep 21, 2008 4:53:10 PM)
(This user has left DigiChat)

Jim_VA (Sep 21, 2008 4:53:26 PM)
hi

e-m (Sep 21, 2008 4:53:36 PM)
where r u from

e-m (Sep 21, 2008 4:53:47 PM)
im from jackson miss

Jim_VA (Sep 21, 2008 4:54:20 PM)
Arlington Virginia

e-m (Sep 21, 2008 4:54:47 PM)
r u n a wheelchair

Jim_VA (Sep 21, 2008 4:55:25 PM)
do you have ALS?

Jim_VA (Sep 21, 2008 4:55:35 PM)
yes

e-m (Sep 21, 2008 4:55:47 PM)
how long

Jim_VA (Sep 21, 2008 4:56:01 PM)
h

Jim_VA (Sep 21, 2008 4:56:22 PM)
8 years

e-m (Sep 21, 2008 4:56:46 PM)
yes they say i do

Jim_VA (Sep 21, 2008 4:57:18 PM)
sorry to hear that

e-m (Sep 21, 2008 4:57:22 PM)
but i don;t believe i do

e-m (Sep 21, 2008 4:57:45 PM)
can u use ur arms

Jim_VA (Sep 21, 2008 4:58:10 PM)
I did not either

Jim_VA (Sep 21, 2008 4:58:23 PM)
no

e-m (Sep 21, 2008 4:58:49 PM)
but u can type rite

e-m (Sep 21, 2008 5:00:28 PM)
jim

Jim_VA (Sep 21, 2008 5:00:40 PM)
this room is going to close soon

e-m (Sep 21, 2008 5:00:48 PM)
y

Jim_VA (Sep 21, 2008 5:00:56 PM)
I am slow typing due to my adaptive equipment.

Jim_VA (Sep 21, 2008 5:01:22 PM)
pigiron308@yahoo.com

Jim_VA (Sep 21, 2008 5:03:17 PM)
my website will show you how I type

Jim_VA (Sep 21, 2008 5:03:27 PM)
www.alsandus.org

e-m (Sep 21, 2008 5:03:51 PM)
(This user has left DigiChat)

Jim_VA (Sep 21, 2008 5:04:30 PM)
(This user has left DigiChat)