Living with ALS

DanG (Oct 5, 2008 2:09:45 PM)
Hello

Jim_VA (Oct 5, 2008 2:14:37 PM)
(This user has entered Living with ALS)

Jim_VA (Oct 5, 2008 2:15:35 PM)
Hi Dan

Jim_VA (Oct 5, 2008 2:16:04 PM)
how are you

DanG (Oct 5, 2008 2:19:30 PM)
Hi Jim...Suppose to hear final word tomorrow on Lake Taylor in Norfolk. Everything ELSE has been a strike out!! Not a THING!

Jim_VA (Oct 5, 2008 2:21:33 PM)
what do you mean "final"?

DanG (Oct 5, 2008 2:23:25 PM)
their final decision

Jim_VA (Oct 5, 2008 2:24:44 PM)
bummer

Jim_VA (Oct 5, 2008 2:27:01 PM)
have they got room

DanG (Oct 5, 2008 2:31:31 PM)
They must have Jim or they would not be considering my file. I hope so!

Jim_VA (Oct 5, 2008 2:32:37 PM)
me too

DanG (Oct 5, 2008 2:33:50 PM)
How has your week been?

Jim_VA (Oct 5, 2008 2:36:38 PM)
got my computer fixed that is good- how about yours?

DanG (Oct 5, 2008 2:38:12 PM)
Trying to find a place to live and that is pretty much it. What was your puter doing?

Jim_VA (Oct 5, 2008 2:39:55 PM)
the video card was bad

DanG (Oct 5, 2008 2:42:08 PM)
bet you felt lost with your puter. I know I do...

Jim_VA (Oct 5, 2008 2:42:08 PM)
they are very hard to find

Jim_VA (Oct 5, 2008 2:42:32 PM)
yes

DanG (Oct 5, 2008 2:43:53 PM)
Does Ron have any pull with those folks in Norfolk?

Jim_VA (Oct 5, 2008 2:44:39 PM)
I found one and I want to find another

DanG (Oct 5, 2008 2:46:02 PM)
found one what? video card? if so, what kind is it? I have a lot of pc part dealers that I know.

Jim_VA (Oct 5, 2008 2:47:01 PM)
I don't think so but I will ask him

Jim_VA (Oct 5, 2008 2:49:13 PM)
yes a video card Dell ATI Radeon Mobility 9800 256 mb

DanG (Oct 5, 2008 2:51:43 PM)
If I find one, I will email you. ATI Radeon is pretty common video card.

Jim_VA (Oct 5, 2008 2:52:02 PM)
Mobility is the key word- indicates a laptop

Jim_VA (Oct 5, 2008 2:52:23 PM)
ok great

aspen (Oct 5, 2008 3:34:06 PM)
(This user has entered Living with ALS)

aspen (Oct 5, 2008 3:34:36 PM)
Hello, Jim

Jim_VA (Oct 5, 2008 3:34:58 PM)
hi AL

aspen (Oct 5, 2008 3:35:59 PM)
I'm John. I am the guy ho kids you about having a garden hose.

aspen (Oct 5, 2008 3:36:30 PM)
or needing one, anyway

DanG (Oct 5, 2008 3:37:00 PM)
Hi John, Dan from North Georgia here,

Jim_VA (Oct 5, 2008 3:37:04 PM)
KC

aspen (Oct 5, 2008 3:37:21 PM)
yes. Good to meet you, Dan.

aspen (Oct 5, 2008 3:38:13 PM)
Am I interrupting?

Jim_VA (Oct 5, 2008 3:38:36 PM)
how are you today

aspen (Oct 5, 2008 3:39:34 PM)
Well, I quit working this week. Retired Oct 1. Having a PEG done this week, and yes I know about French 20

Jim_VA (Oct 5, 2008 3:40:09 PM)
not at all

Jim_VA (Oct 5, 2008 3:40:26 PM)
lol

aspen (Oct 5, 2008 3:40:57 PM)
We'll see what the Dr says.

Jim_VA (Oct 5, 2008 3:41:06 PM)
french 30

aspen (Oct 5, 2008 3:41:20 PM)
30?

DanG (Oct 5, 2008 3:42:13 PM)
I hane a 22 Fr.. After about a week, you will not even know it is there. They put me in twilight sleep, so I remember the whole procedure.

Jim_VA (Oct 5, 2008 3:43:26 PM)
I don't think that they can go bigger than a 24

aspen (Oct 5, 2008 3:43:32 PM)
We have a friend who is a Chinese girl attending university here. She says I will have two mouths, one to talk with and the other to eat with.

Jim_VA (Oct 5, 2008 3:43:43 PM)
lol

DanG (Oct 5, 2008 3:43:45 PM)
Ask your supplier to get you a feeding pump with the bags. Even you don't use it, you will have it in case you get to the point of having to use it.

aspen (Oct 5, 2008 3:44:43 PM)
Feeding pump. OK. I have no idea what to expect.

Jim_VA (Oct 5, 2008 3:44:57 PM)
I have a french 30

DanG (Oct 5, 2008 3:45:46 PM)
You will also need a box of 60 cc catheter tip syringes each month. This is a must have.

aspen (Oct 5, 2008 3:46:17 PM)
How do you have 30 when you don't think they go biger than 24>

DanG (Oct 5, 2008 3:46:58 PM)
I have a 22Fr. I know they go up to 24

wildeman1 (Oct 5, 2008 3:47:02 PM)
(This user has entered Living with ALS)

Jim_VA (Oct 5, 2008 3:47:27 PM)
put them in after

aspen (Oct 5, 2008 3:47:41 PM)
hello, Wildeman

wildeman1 (Oct 5, 2008 3:48:08 PM)
Hi all, I'm back after an extended absence

Jim_VA (Oct 5, 2008 3:48:43 PM)
Hi Tom

Jim_VA (Oct 5, 2008 3:49:22 PM)
how is everything

wildeman1 (Oct 5, 2008 3:49:31 PM)
I'm back home in VA

Jim_VA (Oct 5, 2008 3:50:04 PM)
great

DanG (Oct 5, 2008 3:50:07 PM)
where at in va>

wildeman1 (Oct 5, 2008 3:50:19 PM)
Chesapeake, Va.

DanG (Oct 5, 2008 3:51:06 PM)
ah nice

Jim_VA (Oct 5, 2008 3:51:55 PM)
glad to hear that

wildeman1 (Oct 5, 2008 3:52:18 PM)
we returned last week

aspen (Oct 5, 2008 3:53:19 PM)
Dan, you said 60 cc syringes. I don't know what to expect, but that seems kind of small for geting enuf to eat and drink.

DanG (Oct 5, 2008 3:55:11 PM)
no that is big. it pours in quite quickly. That is why i mentioned the bags

wildeman1 (Oct 5, 2008 3:55:30 PM)
I think you mean 60mL don't you? That's what I use.

DanG (Oct 5, 2008 3:55:36 PM)
Any questions --- dan_garrett@mac.com

DanG (Oct 5, 2008 3:56:38 PM)
I believe it is same. anyway 60 ml if your would like to use that term.

DanG (Oct 5, 2008 3:57:52 PM)
medicare will pay for food to. Dr. will just have to do extra paperwork. But it is worth it.

aspen (Oct 5, 2008 3:58:22 PM)
I just went in the kitchen and looked at a measuring cup. Thats about 1/4 cup of food or water.

DanG (Oct 5, 2008 3:59:26 PM)
there is 250 ml in my cans .... so that is about 1 cup..

aspen (Oct 5, 2008 4:00:31 PM)
so you fill he syringe 4 times for a can?

wildeman1 (Oct 5, 2008 4:00:39 PM)
what food are you taking? I've got 2CAL-HN

DanG (Oct 5, 2008 4:01:01 PM)
I use Nestle Nutren

DanG (Oct 5, 2008 4:02:05 PM)
Vanilla...Helps with aftertaste -- yes you do taste it from you r stomach.

Jim_VA (Oct 5, 2008 4:02:07 PM)
Glucerna here

aspen (Oct 5, 2008 4:03:51 PM)
does water thru the tube really releave being thirsty? Sorry, I am suddenly feeling like I need to know stuff.

wildeman1 (Oct 5, 2008 4:04:19 PM)
my home health care nurse says she will contruct a pole and bag so that I can pour the whole can at once and I don't have to refill the syringe 4 times for ea. can

Jim_VA (Oct 5, 2008 4:04:26 PM)
you should measure your fluid

DanG (Oct 5, 2008 4:04:45 PM)
yes flush 60 cc before and after feeding.

Jim_VA (Oct 5, 2008 4:07:07 PM)
we pour straight in the syringe

aspen (Oct 5, 2008 4:07:42 PM)
well, I can still drink thru a straw, and eat soft food. They just want to get this done while I am still "healthy"

Jim_VA (Oct 5, 2008 4:08:22 PM)
yes

DanG (Oct 5, 2008 4:08:46 PM)
same hear Jim. i just use water to flush and help keep tube clean. Good Idea about getting it done. Are you going to be outpatient. I was.

wildeman1 (Oct 5, 2008 4:09:55 PM)
after a few 'accidents' where I spilled that sticky stuff all over me ;-) I learned to hold it by the tube opening and not by the syringe

aspen (Oct 5, 2008 4:10:19 PM)
no. Two nights in the hospital! They say they will try to fit me in between real surgeries.

Jim_VA (Oct 5, 2008 4:10:54 PM)
you don't want to lose weight

DanG (Oct 5, 2008 4:11:23 PM)
2 nights...wow..Do you have trach

aspen (Oct 5, 2008 4:12:57 PM)
Jim, thats why i was wondering about getting adequate food and water 1/4 cup at a time. No trach yet Dan. I don't know why so long. Going in tomorrow am, insertion sometine Tues, go home Wed.

Jim_VA (Oct 5, 2008 4:13:29 PM)
t does not take long

wildeman1 (Oct 5, 2008 4:13:55 PM)
you must have special needs; I went in at 9 am and was home that afternoon about 4 pm

DanG (Oct 5, 2008 4:14:25 PM)
or good insurance..(LOL)

wildeman1 (Oct 5, 2008 4:14:33 PM)
lol

aspen (Oct 5, 2008 4:14:45 PM)
Not long, and no general anesthesia for me either. I think the hospital may have special needs.

aspen (Oct 5, 2008 4:14:57 PM)
lol

Jim_VA (Oct 5, 2008 4:16:09 PM)
we watch oz of fluid

aspen (Oct 5, 2008 4:16:44 PM)
Oz in and out both?

DanG (Oct 5, 2008 4:17:06 PM)
tell em since they will have so much time.. slap you a trach in there ..while you are under twilight.

Jim_VA (Oct 5, 2008 4:17:29 PM)
just in

Jim_VA (Oct 5, 2008 4:17:53 PM)
lol

aspen (Oct 5, 2008 4:18:50 PM)
Don't think so. Dan. I can handle a feeding tube, but the idea of being on a respirator makes me want to get up and run away. Sorry if that offends.

wildeman1 (Oct 5, 2008 4:19:18 PM)
must leave; talk to y'all agin soon. God Bless.

aspen (Oct 5, 2008 4:19:41 PM)
God bless, W1.

Jim_VA (Oct 5, 2008 4:19:42 PM)
my trach was under general

Jim_VA (Oct 5, 2008 4:20:28 PM)
take care Tom

wildeman1 (Oct 5, 2008 4:20:32 PM)
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DanG (Oct 5, 2008 4:20:38 PM)
no offense. It was a couple of months after my trach before I went on nvent full time.

aspen (Oct 5, 2008 4:23:35 PM)
I don't even want to think about it. Its called Living In Denial.

DanG (Oct 5, 2008 4:24:16 PM)
sorry, i wil shut up.

Jim_VA (Oct 5, 2008 4:25:55 PM)
lol at first I was on nights only

DanG (Oct 5, 2008 4:26:13 PM)
by all good luck aspen. prayers will be with you..

DanG (Oct 5, 2008 4:26:19 PM)
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aspen (Oct 5, 2008 4:26:22 PM)
I got no problem with you, Dan. change of subject: What did you guys do about making a house accessible? That s going to be an issue for us

aspen (Oct 5, 2008 4:26:45 PM)
Shucks. I did't mean to do that.

Jim_VA (Oct 5, 2008 4:28:05 PM)
we did an addition

aspen (Oct 5, 2008 4:29:01 PM)
We are tinking about useing some of the garage to enlarge a half bath.

Jim_VA (Oct 5, 2008 4:30:58 PM)
we put in a wheelchair accessible shower

aspen (Oct 5, 2008 4:33:13 PM)
yeah, thats what we would make room for. Our main bathroon could not possibly be modified for me.

Jim_VA (Oct 5, 2008 4:34:24 PM)
yep

aspen (Oct 5, 2008 4:36:20 PM)
whoops. my wife just came home. I need to go, Jim. Talk to ou later.

aspen (Oct 5, 2008 4:36:54 PM)
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Jim_VA (Oct 5, 2008 4:59:43 PM)
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