Living with ALS

richard-o (Jun 25, 2008 7:31:52 PM)
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Jim_VA (Jun 25, 2008 8:07:41 PM)
(This user has entered Living with ALS)

Jim_VA (Jun 25, 2008 8:07:59 PM)
Hi

momma (Jun 25, 2008 8:59:06 PM)
(This user has entered Living with ALS)

Jim_VA (Jun 25, 2008 8:59:35 PM)
Hi momma

momma (Jun 25, 2008 8:59:42 PM)
just dropped in to say hello

momma (Jun 25, 2008 9:00:00 PM)
im a mom of a 22 yrold son with dmd

Jim_VA (Jun 25, 2008 9:00:04 PM)
Beth?

momma (Jun 25, 2008 9:00:09 PM)
no

Jim_VA (Jun 25, 2008 9:00:31 PM)
ah sorry

momma (Jun 25, 2008 9:00:38 PM)
how are you ?

momma (Jun 25, 2008 9:00:41 PM)
np

Jim_VA (Jun 25, 2008 9:01:14 PM)
great ty & u

momma (Jun 25, 2008 9:01:39 PM)
kinda soggy here but im doing good :)

Jim_VA (Jun 25, 2008 9:02:28 PM)
lol midwest?

momma (Jun 25, 2008 9:02:33 PM)
ohio

Jim_VA (Jun 25, 2008 9:03:18 PM)
hit bad?

momma (Jun 25, 2008 9:04:07 PM)
well not directly here but lots of flooding about 1 hr south of us

Jim_VA (Jun 25, 2008 9:05:09 PM)
some places got hit hard

momma (Jun 25, 2008 9:05:23 PM)
yea i see that on the news

momma (Jun 25, 2008 9:05:48 PM)
well jim i better go check on dmd chat im a cohost

momma (Jun 25, 2008 9:05:59 PM)
ill check back another time

Jim_VA (Jun 25, 2008 9:06:16 PM)
a real shame

Jim_VA (Jun 25, 2008 9:06:26 PM)
ty gn

momma (Jun 25, 2008 9:06:41 PM)
ok take care

Jim_VA (Jun 25, 2008 9:06:53 PM)
u 2

momma (Jun 25, 2008 9:07:05 PM)
(This user has moved to DMD Parent Chat)

momma (Jun 25, 2008 9:21:47 PM)
(This user has entered Living with ALS)

momma (Jun 25, 2008 9:22:07 PM)
well are ya still here jim?

Jim_VA (Jun 25, 2008 9:22:15 PM)
hi again

momma (Jun 25, 2008 9:22:56 PM)
we'er on differant time zones and lot of time thier not even home yet

momma (Jun 25, 2008 9:23:27 PM)
so whats your biggest challenge your facing right now?

momma (Jun 25, 2008 9:23:43 PM)
that you comfortable sharing that is

Jim_VA (Jun 25, 2008 9:24:09 PM)
nobody in your room either

momma (Jun 25, 2008 9:24:22 PM)
nope not yet

Jim_VA (Jun 25, 2008 9:25:10 PM)
living i guess lol

momma (Jun 25, 2008 9:25:52 PM)
how long have you been diaginosed?

Jim_VA (Jun 25, 2008 9:26:58 PM)
actually helping someone in Pittsburg

momma (Jun 25, 2008 9:27:13 PM)
oh so you dont have als

Jim_VA (Jun 25, 2008 9:27:24 PM)
7 years

momma (Jun 25, 2008 9:27:33 PM)
oh i see

momma (Jun 25, 2008 9:27:53 PM)
so you do have ALS?

Jim_VA (Jun 25, 2008 9:28:51 PM)
yes I was on a ventilator before dx - yes

momma (Jun 25, 2008 9:29:10 PM)
I dont personally know anyone with als but from what i have seen on tv looks so very challenging

momma (Jun 25, 2008 9:29:21 PM)
my son use a niv

Jim_VA (Jun 25, 2008 9:29:47 PM)
kind of unusual

Jim_VA (Jun 25, 2008 9:30:01 PM)
wow

momma (Jun 25, 2008 9:30:29 PM)
they wanted to trach but we did some chatting to other moms on mda chat and he,s been using it for almost 2 yrs

momma (Jun 25, 2008 9:31:02 PM)
it was a big fight but we found a willing dr in our area willing to help

Jim_VA (Jun 25, 2008 9:31:26 PM)
it took 2 years to dx

Jim_VA (Jun 25, 2008 9:31:42 PM)
great

momma (Jun 25, 2008 9:31:54 PM)
oh that must of seem like forever

Jim_VA (Jun 25, 2008 9:32:11 PM)
yes

momma (Jun 25, 2008 9:32:18 PM)
do you have famliy to help

momma (Jun 25, 2008 9:33:08 PM)
im my son full time care giver but wouldnt change it for the world

Jim_VA (Jun 25, 2008 9:33:57 PM)
I see they are approving a breathing vest

Jim_VA (Jun 25, 2008 9:34:37 PM)
yes i have help

momma (Jun 25, 2008 9:34:40 PM)
well the vent my son uses christopher reevse used at one point

momma (Jun 25, 2008 9:34:51 PM)
is it hard to find good help

momma (Jun 25, 2008 9:35:29 PM)
a lot of people have a very hard time getting and keeping good help

Jim_VA (Jun 25, 2008 9:35:52 PM)
he used the vest too

momma (Jun 25, 2008 9:36:02 PM)
yeah

momma (Jun 25, 2008 9:36:32 PM)
actually my sons respratory thrp worked with him

Jim_VA (Jun 25, 2008 9:37:05 PM)
I am looking for help now

momma (Jun 25, 2008 9:37:43 PM)
as in nursing help ?

Jim_VA (Jun 25, 2008 9:38:03 PM)
nice I cannot understand the bed sore

momma (Jun 25, 2008 9:38:26 PM)
do you have a agency that you use?

momma (Jun 25, 2008 9:38:53 PM)
my son has never had a bed sore hope he never does

momma (Jun 25, 2008 9:39:10 PM)
but has lot of other issues

Jim_VA (Jun 25, 2008 9:39:33 PM)
live in help- I can train anyone

momma (Jun 25, 2008 9:39:44 PM)
yeah

momma (Jun 25, 2008 9:40:11 PM)
my son is battling a sore gj tube site is sore

Jim_VA (Jun 25, 2008 9:40:27 PM)
what kind of issues

momma (Jun 25, 2008 9:40:31 PM)
mabey infected

Jim_VA (Jun 25, 2008 9:40:48 PM)
oh my

momma (Jun 25, 2008 9:40:53 PM)
dr did culure today find out friday

momma (Jun 25, 2008 9:41:56 PM)
hopefully not but we have been on top of things so hopefully it clears up with no other complcations

Jim_VA (Jun 25, 2008 9:41:57 PM)
how long has he had the tube

Jim_VA (Jun 25, 2008 9:42:15 PM)
yes

momma (Jun 25, 2008 9:42:16 PM)
just sence aug of 07

momma (Jun 25, 2008 9:43:20 PM)
do you have a tube

Jim_VA (Jun 25, 2008 9:43:31 PM)
ah what do you clean with

Jim_VA (Jun 25, 2008 9:43:42 PM)
yes

momma (Jun 25, 2008 9:43:58 PM)
well i had been using antibacteria soap and water

momma (Jun 25, 2008 9:44:08 PM)
any suggeestions

Jim_VA (Jun 25, 2008 9:44:31 PM)
I have had many

momma (Jun 25, 2008 9:44:59 PM)
and also 1/2 water 1/2 peroxide

momma (Jun 25, 2008 9:45:51 PM)
have you ever used milkamagnesia on sore peg site?

Jim_VA (Jun 25, 2008 9:46:15 PM)
we use saline only and put neosporoin

momma (Jun 25, 2008 9:46:44 PM)
we also but 2x2 under the disk on it but dr says no

momma (Jun 25, 2008 9:47:03 PM)
he says it keeps it to moist

Jim_VA (Jun 25, 2008 9:47:14 PM)
I never had a sore one

momma (Jun 25, 2008 9:47:33 PM)
but if we dont it get even redder

momma (Jun 25, 2008 9:47:37 PM)
thats good

Jim_VA (Jun 25, 2008 9:47:55 PM)
I use 2x2 also

Jim_VA (Jun 25, 2008 9:48:25 PM)
no peroxide

momma (Jun 25, 2008 9:48:27 PM)
he says it cany air out if its covered

momma (Jun 25, 2008 9:48:34 PM)
i see

Jim_VA (Jun 25, 2008 9:50:13 PM)
people are stopping peroxide

momma (Jun 25, 2008 9:50:24 PM)
oh yea

momma (Jun 25, 2008 9:50:37 PM)
i know some use on trach site

Jim_VA (Jun 25, 2008 9:50:50 PM)
the use of

Jim_VA (Jun 25, 2008 9:52:35 PM)
I stopped over a year ago

momma (Jun 25, 2008 9:53:41 PM)
oh really

Jim_VA (Jun 25, 2008 9:54:26 PM)
long-term ALS patients have stopped it

Jim_VA (Jun 25, 2008 9:55:35 PM)
saline or soapy water

momma (Jun 25, 2008 9:56:05 PM)
i see

momma (Jun 25, 2008 9:56:58 PM)
do you feel your help by mda ?

Jim_VA (Jun 25, 2008 9:57:19 PM)
what size tube does your son have

momma (Jun 25, 2008 9:57:31 PM)
14

momma (Jun 25, 2008 9:57:50 PM)
but his is an unusauly set up

Jim_VA (Jun 25, 2008 9:58:49 PM)
I have never asked them for help

momma (Jun 25, 2008 9:59:03 PM)
he has both g &j we use one for night time feed and the other for gastric suction

momma (Jun 25, 2008 9:59:21 PM)
just currious about mda help

Jim_VA (Jun 25, 2008 9:59:33 PM)
I have a 24

momma (Jun 25, 2008 9:59:41 PM)
oh wow

momma (Jun 25, 2008 10:00:01 PM)
kents is pretty small

Jim_VA (Jun 25, 2008 10:00:48 PM)
i got rid of my g/j tube

momma (Jun 25, 2008 10:01:03 PM)
problems with it?

Jim_VA (Jun 25, 2008 10:02:20 PM)
I am going to sneek up to a 28

momma (Jun 25, 2008 10:02:31 PM)
oh i see

Jim_VA (Jun 25, 2008 10:03:56 PM)
yes the j tube clogged for 9 hours

Jim_VA (Jun 25, 2008 10:04:20 PM)
that did it

momma (Jun 25, 2008 10:04:21 PM)
did they put med through it

Jim_VA (Jun 25, 2008 10:05:09 PM)
no just formula

momma (Jun 25, 2008 10:05:26 PM)
my son clogged a while back and come to find out it the the seryenge was to big that we use to flush it it was collasped the tube

momma (Jun 25, 2008 10:06:06 PM)
no problems with clogging anymore

Jim_VA (Jun 25, 2008 10:06:16 PM)
it was a g/j 20

momma (Jun 25, 2008 10:06:22 PM)
oh

Jim_VA (Jun 25, 2008 10:07:23 PM)
does he use a pump

momma (Jun 25, 2008 10:07:34 PM)
yea

momma (Jun 25, 2008 10:07:46 PM)
a zevex it real small

momma (Jun 25, 2008 10:08:41 PM)
when he first started to use it he was a continuous feed so needed to have something portable

Jim_VA (Jun 25, 2008 10:08:48 PM)
I had a kangaroo

momma (Jun 25, 2008 10:09:06 PM)
thats what the use in the hospital

momma (Jun 25, 2008 10:09:15 PM)
kangaroo

momma (Jun 25, 2008 10:09:31 PM)
well i better go need to get son in bed

momma (Jun 25, 2008 10:09:40 PM)
its been nice chatting

Jim_VA (Jun 25, 2008 10:10:09 PM)
I do bolus rfeeding now

momma (Jun 25, 2008 10:10:13 PM)
oh

momma (Jun 25, 2008 10:10:49 PM)
goodnight

Jim_VA (Jun 25, 2008 10:11:06 PM)
yes this is my websites

Jim_VA (Jun 25, 2008 10:11:20 PM)
www.alsandus.org

momma (Jun 25, 2008 10:11:22 PM)
(This user has moved to Wheelchair Gang)

Jim_VA (Jun 25, 2008 10:11:34 PM)
(This user has left DigiChat)