Living with ALS

Aspen (Nov 9, 2008 4:43:29 PM)
(This user has entered Living with ALS)

Jim_VA (Nov 9, 2008 4:43:50 PM)
hi

Aspen (Nov 9, 2008 4:43:51 PM)
Happy Sunday, Jim.

Aspen (Nov 9, 2008 4:44:29 PM)
small crowd today.

Jim_VA (Nov 9, 2008 4:45:06 PM)
how is the tube

Aspen (Nov 9, 2008 4:45:34 PM)
Feeling a LOT better than it did just after surgery.

Jim_VA (Nov 9, 2008 4:46:23 PM)
yes I was writing notes

Aspen (Nov 9, 2008 4:46:56 PM)
They want me to tape the long end onto my chest but I am xperimenting with holding it in a lanyard around my neck

Jim_VA (Nov 9, 2008 4:47:13 PM)
glad to hear that

Aspen (Nov 9, 2008 4:47:31 PM)
even paper tape makes my skin break out

Jim_VA (Nov 9, 2008 4:49:07 PM)
I would try a belt

Aspen (Nov 9, 2008 4:50:24 PM)
a belt how? A belt how? A belt how

Jim_VA (Nov 9, 2008 4:50:49 PM)
expanding with velcro for tube

Aspen (Nov 9, 2008 4:51:08 PM)
sorry suddenly i cannot use my enter button to send my message

Jim_VA (Nov 9, 2008 4:52:20 PM)
you may have to make one

Aspen (Nov 9, 2008 4:52:47 PM)
I guess i cannot visualize what you mean. Belt around my waist?

Jim_VA (Nov 9, 2008 4:53:28 PM)
or have one made

Jim_VA (Nov 9, 2008 4:54:23 PM)
around your chest

Jim_VA (Nov 9, 2008 4:55:51 PM)
I can see one

Aspen (Nov 9, 2008 4:56:47 PM)
i'll see. the lanyard doesn't hold it offcenter like i prefer, and i do have to tape it at night to hold it in position

Jim_VA (Nov 9, 2008 4:57:17 PM)
several wasabie ones

Aspen (Nov 9, 2008 4:58:23 PM)
a tight belt around my chest would interfere with breathing, a loose one would slip down around my waist. how does this work? is this what you use?

Jim_VA (Nov 9, 2008 4:59:46 PM)
m not tight

Jim_VA (Nov 9, 2008 5:00:43 PM)
shoulder straps

Jim_VA (Nov 9, 2008 5:02:12 PM)
light cotton straps

Jim_VA (Nov 9, 2008 5:03:13 PM)
and a light belt

Aspen (Nov 9, 2008 5:04:22 PM)
shoulder straps, with a belt around my chest. like a horse halter. it would allow me to secure it off center. I already have several lanyards. i may give it a try, though.

Jim_VA (Nov 9, 2008 5:05:32 PM)
with a piece of velcro flap for the tube

Aspen (Nov 9, 2008 5:05:36 PM)
BRB. My dogs say my wife just got home.

Jim_VA (Nov 9, 2008 5:05:52 PM)
k

Aspen (Nov 9, 2008 5:07:02 PM)
Back

Jim_VA (Nov 9, 2008 5:08:00 PM)
I would be afraid of something around my neck

Jim_VA (Nov 9, 2008 5:09:31 PM)
maybe that is the simplest

Aspen (Nov 9, 2008 5:09:42 PM)
i've spent years at work wearing an ID badge on a lanyard. its no big deal to me. and this is INSIDE my shirt so it won't snag on anything.

Jim_VA (Nov 9, 2008 5:10:31 PM)
yes

Jim_VA (Nov 9, 2008 5:12:19 PM)
I just don't like things around my neck

Aspen (Nov 9, 2008 5:13:23 PM)
ok. so you use a belt like you described?

Jim_VA (Nov 9, 2008 5:13:56 PM)
I hated to wear a tie

Jim_VA (Nov 9, 2008 5:14:50 PM)
no I cannot walk

Jim_VA (Nov 9, 2008 5:16:32 PM)
I just keep a cloth over it

Jim_VA (Nov 9, 2008 5:17:15 PM)
up my stomach

Aspen (Nov 9, 2008 5:17:28 PM)
ok i can see how that would work

Aspen (Nov 9, 2008 5:19:10 PM)
Well, I am not yet needing to be fed thru the tube. Its just there for when I need it.

Jim_VA (Nov 9, 2008 5:21:51 PM)
above my seat

Jim_VA (Nov 9, 2008 5:22:51 PM)
belt

Aspen (Nov 9, 2008 5:24:11 PM)
so your seat belt can keep it from falling further down. I think I understand.

Jim_VA (Nov 9, 2008 5:25:05 PM)
good idea

Jim_VA (Nov 9, 2008 5:26:28 PM)
it is above my seat belt

Jim_VA (Nov 9, 2008 5:29:19 PM)
I wear a shoulder/chest harness when I am in the wheelchair

Jim_VA (Nov 9, 2008 5:30:24 PM)
that keeps it from moving

Jim_VA (Nov 9, 2008 5:31:08 PM)
very secure

Aspen (Nov 9, 2008 5:32:19 PM)
ok. Jim, i am sorry. feeding the dogs is something I can still do, and they are getting a little rowdy. I've got to go, and i will keep in mind what you have suggested about a chest harness.

Jim_VA (Nov 9, 2008 5:33:15 PM)
take care and gnight

Aspen (Nov 9, 2008 5:33:20 PM)
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Jim_VA (Nov 9, 2008 5:33:59 PM)
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