Living with ALS
mommazooms (Dec 29, 2008 1:48:30 PM)
mommazooms (Dec 29, 2008 1:58:46 PM)
(This user has left DigiChat)
mommazooms (Dec 29, 2008 1:58:56 PM)
(This user has entered Living with ALS)
Jim_VA (Dec 29, 2008 1:59:19 PM)
(This user has entered Living with ALS)
mommazooms (Dec 29, 2008 1:59:50 PM)
Hi Jim! Merry Christmas!
jackL (Dec 29, 2008 2:00:35 PM)
(This user has entered Living with ALS)
Jim_VA (Dec 29, 2008 2:00:57 PM)
Hi Beth same to you
mommazooms (Dec 29, 2008 2:01:08 PM)
Hi Jack! Merry Christmas!
mommazooms (Dec 29, 2008 2:01:39 PM)
TY :)
Jim_VA (Dec 29, 2008 2:01:50 PM)
Hi Jack
jackL (Dec 29, 2008 2:02:20 PM)
Hi!i Merry Christmas everyone
Jim_VA (Dec 29, 2008 2:03:48 PM)
I haven't forgot the the tea Beth
mommazooms (Dec 29, 2008 2:04:49 PM)
Lol! I'm surviving on dark chocolate!
Jim_VA (Dec 29, 2008 2:05:05 PM)
Jack are they after you about a tube
Jim_VA (Dec 29, 2008 2:05:28 PM)
lol
jackL (Dec 29, 2008 2:05:48 PM)
My doctor recommended that I put in a feeding tube soon.
jackL (Dec 29, 2008 2:06:50 PM)
I have lost about 15lbs in last two months
Jim_VA (Dec 29, 2008 2:07:12 PM)
get a size french 22 minimum
mommazooms (Dec 29, 2008 2:08:00 PM)
Yikes Jack!
Jim_VA (Dec 29, 2008 2:08:34 PM)
you will gain weight back
jackL (Dec 29, 2008 2:09:15 PM)
I eat at least four good meals a day, but I still am loseing weight
Jim_VA (Dec 29, 2008 2:09:45 PM)
I went from 240 to 170
Jim_VA (Dec 29, 2008 2:10:22 PM)
now I am 205
jackL (Dec 29, 2008 2:10:29 PM)
do you have a tube
mommazooms (Dec 29, 2008 2:10:55 PM)
I'm steady at 170...
Jim_VA (Dec 29, 2008 2:11:22 PM)
and holding - yes
jackL (Dec 29, 2008 2:12:10 PM)
do you have any breathing problems
Jim_VA (Dec 29, 2008 2:12:38 PM)
I have had a tube for years
jackL (Dec 29, 2008 2:13:10 PM)
did you have any problems with surgery putting the tube in
Jim_VA (Dec 29, 2008 2:13:47 PM)
I cannot breathe on a ventilator
Jim_VA (Dec 29, 2008 2:15:33 PM)
no I have had 3 two tubes inserted
jackL (Dec 29, 2008 2:16:02 PM)
I have a lot of problems laying flat. Will i have problems during the surgery
Jim_VA (Dec 29, 2008 2:16:49 PM)
we change tubes every 3 months
Jim_VA (Dec 29, 2008 2:17:30 PM)
I don't think so
jackL (Dec 29, 2008 2:18:28 PM)
I thought it only had to be cleaned daily, do you have to have a new tube inserted every 3 months
jackL (Dec 29, 2008 2:18:56 PM)
is it hard to clean
Jim_VA (Dec 29, 2008 2:19:13 PM)
there are two methods of placing tubes
Jim_VA (Dec 29, 2008 2:21:04 PM)
no not hard yes every 3 months
Jim_VA (Dec 29, 2008 2:22:33 PM)
the two methods are PEG & RIG
jackL (Dec 29, 2008 2:22:53 PM)
do you still eat normal meals and use the tube
Jim_VA (Dec 29, 2008 2:23:43 PM)
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Jim_VA (Dec 29, 2008 2:23:53 PM)
(This user has entered Living with ALS)
Jim_VA (Dec 29, 2008 2:24:20 PM)
I eat very little
jackL (Dec 29, 2008 2:24:23 PM)
my doctor recommend the PEG
Jim_VA (Dec 29, 2008 2:25:28 PM)
either is ok
Jim_VA (Dec 29, 2008 2:26:30 PM)
PEG goes down your throat
jackL (Dec 29, 2008 2:27:22 PM)
do you have to spend some time in hospital
Jim_VA (Dec 29, 2008 2:28:14 PM)
RIG is done from the outside
Jim_VA (Dec 29, 2008 2:28:51 PM)
depends on your doctor
jackL (Dec 29, 2008 2:29:23 PM)
which one is better. is one easier to get done
Jim_VA (Dec 29, 2008 2:29:46 PM)
some are outpatient
Jim_VA (Dec 29, 2008 2:31:12 PM)
I have had both and about the same
Jim_VA (Dec 29, 2008 2:32:59 PM)
it really depends on the amount of anesthetesia
jackL (Dec 29, 2008 2:33:16 PM)
how long have you had the tube
Jim_VA (Dec 29, 2008 2:35:40 PM)
I had 1 from 2001 through 2002 and another from 2006 to present
jackL (Dec 29, 2008 2:36:26 PM)
can you lay flat on a bed, I cannot lay flat on a bed anymore trouble breathing
Jim_VA (Dec 29, 2008 2:36:59 PM)
with the ventilator
Jim_VA (Dec 29, 2008 2:37:39 PM)
without the ventilator no
jackL (Dec 29, 2008 2:38:23 PM)
I do not have a ventilator
mommazooms (Dec 29, 2008 2:38:43 PM)
Jim, Can you breathe w/o the vent?
Jim_VA (Dec 29, 2008 2:40:36 PM)
If the ventilator quits I am out within 2 minutes
Jim_VA (Dec 29, 2008 2:42:22 PM)
brain damage starts after 5 minutes w/o 02
jackL (Dec 29, 2008 2:43:20 PM)
How long have you been on a ventilator
Jim_VA (Dec 29, 2008 2:44:27 PM)
since 5-17-01
jackL (Dec 29, 2008 2:45:24 PM)
can you travel with a ventilator
Jim_VA (Dec 29, 2008 2:45:27 PM)
it isn't bad
Jim_VA (Dec 29, 2008 2:46:23 PM)
I am in Florida now
Jim_VA (Dec 29, 2008 2:47:10 PM)
from Arlington VA
jackL (Dec 29, 2008 2:47:23 PM)
can you travel by plane
Jim_VA (Dec 29, 2008 2:47:58 PM)
yes but I don't
Jim_VA (Dec 29, 2008 2:49:02 PM)
there are air travel problems
jackL (Dec 29, 2008 2:49:54 PM)
do you have a special chair to get around in that you put the equipment on
Jim_VA (Dec 29, 2008 2:50:14 PM)
one is taking a wheelchair
Jim_VA (Dec 29, 2008 2:50:54 PM)
yes a Permobil wheelchair
Jim_VA (Dec 29, 2008 2:52:52 PM)
they won't let you take it on the plane
Jim_VA (Dec 29, 2008 2:54:17 PM)
has to go in the cargo hold
Jim_VA (Dec 29, 2008 2:55:34 PM)
and there are size restrictions on that
Jim_VA (Dec 29, 2008 2:57:08 PM)
so my chair would have to be taken apart
jackL (Dec 29, 2008 2:58:10 PM)
do you have a lot of family help
mommazooms (Dec 29, 2008 2:59:24 PM)
and then you don't know what it will look like when you land!
jackL (Dec 29, 2008 2:59:44 PM)
I do not know what I would have done without my families help
Jim_VA (Dec 29, 2008 3:00:00 PM)
I would have to know of a cure before I would consider that
Jim_VA (Dec 29, 2008 3:00:30 PM)
yes I have help
jackL (Dec 29, 2008 3:00:58 PM)
family
Jim_VA (Dec 29, 2008 3:01:46 PM)
my youngest son can take the wheelchair apart
Jim_VA (Dec 29, 2008 3:02:16 PM)
yes family help
jackL (Dec 29, 2008 3:02:52 PM)
do you think their will ever be a cure
Jim_VA (Dec 29, 2008 3:03:46 PM)
yes within 4 years
jackL (Dec 29, 2008 3:04:23 PM)
what have you heard
Jim_VA (Dec 29, 2008 3:04:35 PM)
I want to rehab at 70
mommazooms (Dec 29, 2008 3:05:01 PM)
I'm hoping!
jackL (Dec 29, 2008 3:05:21 PM)
I'm praying
Jim_VA (Dec 29, 2008 3:05:32 PM)
there is a lot of research
Jim_VA (Dec 29, 2008 3:06:09 PM)
they have identified the problem
mommazooms (Dec 29, 2008 3:06:30 PM)
Do you think it'll be because of Obama in the White House?
jackL (Dec 29, 2008 3:06:49 PM)
what is the problem
mommazooms (Dec 29, 2008 3:07:14 PM)
And that is...?
westjlittle (Dec 29, 2008 3:07:20 PM)
(This user has entered Living with ALS)
westjlittle (Dec 29, 2008 3:07:32 PM)
Hi all
mommazooms (Dec 29, 2008 3:07:43 PM)
Hi West! Merry Christmas!
westjlittle (Dec 29, 2008 3:07:43 PM)
I had trouble gettin gon
jackL (Dec 29, 2008 3:07:51 PM)
stem cell research
Jim_VA (Dec 29, 2008 3:07:56 PM)
but don't know the cause or how to fix it
westjlittle (Dec 29, 2008 3:08:48 PM)
Hi beth, I saw you listed on my yahoo IM page
Jim_VA (Dec 29, 2008 3:08:52 PM)
genes fold improperly
Jim_VA (Dec 29, 2008 3:09:16 PM)
hi Jim
westjlittle (Dec 29, 2008 3:09:50 PM)
Jim, I got the hat and wore it in front of some OU fans thanks
Jim_VA (Dec 29, 2008 3:10:37 PM)
great
jackL (Dec 29, 2008 3:11:26 PM)
I saw a study on clinicaltrial.gov about protein misfolding - a study for safety and efficacy of arimoclomol - is this what you are referring to?
Jim_VA (Dec 29, 2008 3:11:46 PM)
I bet they liked it
Jim_VA (Dec 29, 2008 3:14:46 PM)
what I am referring to was from the University of PA
Jim_VA (Dec 29, 2008 3:18:42 PM)
did not have arimoclomol
Jim_VA (Dec 29, 2008 3:19:26 PM)
that is a current study
jackL (Dec 29, 2008 3:19:58 PM)
this is one of studies going on now at University of PA
Jim_VA (Dec 29, 2008 3:20:59 PM)
several other places too
jackL (Dec 29, 2008 3:24:15 PM)
It is a two tier study. They are currently in Tier 1 which is a 68 week study. TIER 2 IS A 72 WEEK STUDY.
Jim_VA (Dec 29, 2008 3:24:20 PM)
I don't like the way that the studies are conducted
westjlittle (Dec 29, 2008 3:25:12 PM)
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mommazooms (Dec 29, 2008 3:26:35 PM)
The participants could be dead before the end of the study!!!
Jim_VA (Dec 29, 2008 3:29:27 PM)
I know people who have died in 6 months
mommazooms (Dec 29, 2008 3:31:13 PM)
That's what I mean! And that must mess around with their efficacy results!
Jim_VA (Dec 29, 2008 3:31:50 PM)
If it had not been for my wife I would have died without a diagnosis
westjlittle (Dec 29, 2008 3:32:09 PM)
(This user has entered Living with ALS)
westjlittle (Dec 29, 2008 3:32:27 PM)
got dumped
Jim_VA (Dec 29, 2008 3:34:37 PM)
the University of PA also said the brain is more involved than was thought
westjlittle (Dec 29, 2008 3:36:09 PM)
(This user has left DigiChat)
Jim_VA (Dec 29, 2008 3:37:43 PM)
Jack I talked to Holland
Jim_VA (Dec 29, 2008 3:39:09 PM)
I will try to connect you with them
jackL (Dec 29, 2008 3:43:36 PM)
I have to go. Have a great day! Thanks again for the information!
jackL (Dec 29, 2008 3:43:54 PM)
(This user has left DigiChat)
Jim_VA (Dec 29, 2008 3:43:55 PM)
I read an article from Cornell U also
Jim_VA (Dec 29, 2008 3:45:12 PM)
he did not join PLM
Jim_VA (Dec 29, 2008 3:47:29 PM)
it is tea time be back in a few minutes
mommazooms (Dec 29, 2008 3:47:30 PM)
I wonder why West keeps getting bumped?
mommazooms (Dec 29, 2008 3:48:07 PM)
K
Jim_VA (Dec 29, 2008 3:48:17 PM)
I am watching that
Jim_VA (Dec 29, 2008 3:48:49 PM)
I have been also
mommazooms (Dec 29, 2008 3:58:48 PM)
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mommazooms (Dec 29, 2008 3:59:03 PM)
(This user has entered Living with ALS)
Jim_VA (Dec 29, 2008 4:05:36 PM)
do you have a little yellow triangle just off the upper right corner of the chat window?
mommazooms (Dec 29, 2008 4:06:32 PM)
Yep, any idea what it means?
Jim_VA (Dec 29, 2008 4:08:19 PM)
it is some kind of warning
Jim_VA (Dec 29, 2008 4:08:45 PM)
from java
mommazooms (Dec 29, 2008 4:09:19 PM)
Ok...
mommazooms (Dec 29, 2008 4:10:02 PM)
I'll be back in 20 minutes...
Jim_VA (Dec 29, 2008 4:10:18 PM)
I get a on a few other things
Jim_VA (Dec 29, 2008 4:10:25 PM)
k
Jim_VA (Dec 29, 2008 4:17:19 PM)
the
westjlittle (Dec 29, 2008 4:21:07 PM)
(This user has entered Living with ALS)
westjlittle (Dec 29, 2008 4:21:28 PM)
I'm back
Jim_VA (Dec 29, 2008 4:21:33 PM)
wb
westjlittle (Dec 29, 2008 4:21:49 PM)
I had to login several times
westjlittle (Dec 29, 2008 4:22:00 PM)
would never come up
Jim_VA (Dec 29, 2008 4:22:16 PM)
we got your card
westjlittle (Dec 29, 2008 4:22:21 PM)
great
westjlittle (Dec 29, 2008 4:22:43 PM)
it was at a horse rescue place down the road
Jim_VA (Dec 29, 2008 4:22:45 PM)
nice picture
Jim_VA (Dec 29, 2008 4:23:06 PM)
lol
westjlittle (Dec 29, 2008 4:23:10 PM)
they had a fundraiser
Jim_VA (Dec 29, 2008 4:23:26 PM)
great
westjlittle (Dec 29, 2008 4:23:39 PM)
they got to ride horse etc
Jim_VA (Dec 29, 2008 4:24:33 PM)
I bet they had a good time
Jim_VA (Dec 29, 2008 4:25:25 PM)
we always liked to ride
westjlittle (Dec 29, 2008 4:26:26 PM)
How was jack today?
westjlittle (Dec 29, 2008 4:27:02 PM)
How are you guys today?
Jim_VA (Dec 29, 2008 4:27:08 PM)
a friend of mine had a trained 1/4 horse
Jim_VA (Dec 29, 2008 4:27:41 PM)
great and you
westjlittle (Dec 29, 2008 4:28:09 PM)
I'm fine but been using the cough assist alot
westjlittle (Dec 29, 2008 4:28:18 PM)
I have a minor cold
Jim_VA (Dec 29, 2008 4:28:38 PM)
jack had a lot of questions
Jim_VA (Dec 29, 2008 4:28:52 PM)
bummer
westjlittle (Dec 29, 2008 4:29:27 PM)
I's just runny nose but at night it gets pushed into lungs by bipap
Jim_VA (Dec 29, 2008 4:30:26 PM)
that horse was dangerous he needed a trained rider
Jim_VA (Dec 29, 2008 4:31:43 PM)
he came from a TX ranch
Jim_VA (Dec 29, 2008 4:32:43 PM)
I don't usually have breathing problems
Jim_VA (Dec 29, 2008 4:33:04 PM)
strange huh
westjlittle (Dec 29, 2008 4:33:18 PM)
you don't usually have two germ machines bringing home germs from school
Jim_VA (Dec 29, 2008 4:33:46 PM)
lol
Jim_VA (Dec 29, 2008 4:34:06 PM)
true
westjlittle (Dec 29, 2008 4:34:28 PM)
we make them wash up
westjlittle (Dec 29, 2008 4:34:38 PM)
and use germ stuff
westjlittle (Dec 29, 2008 4:35:01 PM)
avoiding contact with people is helpful too
Jim_VA (Dec 29, 2008 4:35:27 PM)
I also have a bacteria filter on the vent
mommazooms (Dec 29, 2008 4:35:28 PM)
I'm back, sorry it was long!
westjlittle (Dec 29, 2008 4:35:50 PM)
I didn't know you were gone :-)
Jim_VA (Dec 29, 2008 4:35:52 PM)
wb no problem
westjlittle (Dec 29, 2008 4:36:21 PM)
Beth - I saw your login on my yahoo IM
mommazooms (Dec 29, 2008 4:36:23 PM)
Lol!
westjlittle (Dec 29, 2008 4:37:07 PM)
Did you try to use it?
westjlittle (Dec 29, 2008 4:37:28 PM)
Jim - I tried to IM you the other day too
mommazooms (Dec 29, 2008 4:37:28 PM)
(This user has left DigiChat)
mommazooms (Dec 29, 2008 4:37:42 PM)
(This user has entered Living with ALS)
mommazooms (Dec 29, 2008 4:37:49 PM)
Lol! Ok, I'll have to d/l the Yahoo again!
westjlittle (Dec 29, 2008 4:37:59 PM)
I guess you were sunning on the beach
Jim_VA (Dec 29, 2008 4:38:39 PM)
I got that after you were gone
mommazooms (Dec 29, 2008 4:39:07 PM)
I clicked the wrong button :) I had to uninstall it, we had a computer problem!
westjlittle (Dec 29, 2008 4:39:39 PM)
It is 60 here today
Jim_VA (Dec 29, 2008 4:39:57 PM)
They were doing something to me
westjlittle (Dec 29, 2008 4:40:14 PM)
sounds ominous
Jim_VA (Dec 29, 2008 4:40:16 PM)
wow
westjlittle (Dec 29, 2008 4:40:32 PM)
Lecia and the boys are washing the car
westjlittle (Dec 29, 2008 4:40:43 PM)
that's colorado for you
mommazooms (Dec 29, 2008 4:40:54 PM)
It was 60 here yesterday!
Jim_VA (Dec 29, 2008 4:41:22 PM)
lol Denver looked good
Jim_VA (Dec 29, 2008 4:42:11 PM)
like the Cowboys
westjlittle (Dec 29, 2008 4:42:18 PM)
Next week I'll be in PHX for the game
mommazooms (Dec 29, 2008 4:42:54 PM)
And the Pats are out!
Jim_VA (Dec 29, 2008 4:43:04 PM)
neat Fiesta time
Jim_VA (Dec 29, 2008 4:43:52 PM)
Redskins stink
westjlittle (Dec 29, 2008 4:44:20 PM)
I didn't watch any games yesterday
westjlittle (Dec 29, 2008 4:44:40 PM)
we had our family get togehther
Jim_VA (Dec 29, 2008 4:45:06 PM)
pants on fire
westjlittle (Dec 29, 2008 4:45:22 PM)
?
mommazooms (Dec 29, 2008 4:45:31 PM)
Lol!
westjlittle (Dec 29, 2008 4:45:38 PM)
should I call 911
westjlittle (Dec 29, 2008 4:46:09 PM)
I don't get it
mommazooms (Dec 29, 2008 4:46:29 PM)
Liar, liar?
mommazooms (Dec 29, 2008 4:46:57 PM)
That's what I got
westjlittle (Dec 29, 2008 4:47:33 PM)
The next football game I watch will be in person
Jim_VA (Dec 29, 2008 4:47:45 PM)
I will be disappointed if AL doesn't crush UT
Jim_VA (Dec 29, 2008 4:48:46 PM)
Beth caught it
mommazooms (Dec 29, 2008 4:49:06 PM)
Lol!
Jim_VA (Dec 29, 2008 4:50:27 PM)
I didn't watch either :o)
Jim_VA (Dec 29, 2008 4:51:30 PM)
Did Wade get fired
westjlittle (Dec 29, 2008 4:51:48 PM)
I'm almost at the point where I can't swallow It takes an hour to drink an ensure with bana
mommazooms (Dec 29, 2008 4:51:50 PM)
Have fun West! Travel safe :D
westjlittle (Dec 29, 2008 4:52:06 PM)
I will avoid continental
westjlittle (Dec 29, 2008 4:52:27 PM)
I think wade did get the axe
Jim_VA (Dec 29, 2008 4:52:28 PM)
lol
Jim_VA (Dec 29, 2008 4:53:25 PM)
he Waded into a mess
Jim_VA (Dec 29, 2008 4:54:05 PM)
son of a Bum
Jim_VA (Dec 29, 2008 4:55:16 PM)
TO is bad news
mommazooms (Dec 29, 2008 4:57:06 PM)
The Dallas Cowboys aren't changing coaches. Instead, coach Wade Phillips plans to change the way he coaches the Dallas Cowboys
Jim_VA (Dec 29, 2008 4:57:36 PM)
lol
westjlittle (Dec 29, 2008 4:58:19 PM)
I can't anything thatt says he is out other than calls for his head
Jim_VA (Dec 29, 2008 4:59:07 PM)
Jones must be out of coaches
westjlittle (Dec 29, 2008 4:59:29 PM)
maybe he bring back switzer
Jim_VA (Dec 29, 2008 4:59:52 PM)
lol
mommazooms (Dec 29, 2008 5:00:35 PM)
He was apoplectic in the 3Q
Jim_VA (Dec 29, 2008 5:01:41 PM)
He should have been
mommazooms (Dec 29, 2008 5:02:14 PM)
Lol!
Jim_VA (Dec 29, 2008 5:02:32 PM)
they looked like HS
mommazooms (Dec 29, 2008 5:04:07 PM)
Hey! My son's HS team was a lot better than the ’Boys were yesterday!
westjlittle (Dec 29, 2008 5:04:14 PM)
I had to look that word up
Jim_VA (Dec 29, 2008 5:04:35 PM)
well Happy New Year y'all
Jim_VA (Dec 29, 2008 5:04:46 PM)
lol
westjlittle (Dec 29, 2008 5:04:56 PM)
Sure Hook'em horns
westjlittle (Dec 29, 2008 5:05:07 PM)
Happy new year too
mommazooms (Dec 29, 2008 5:05:10 PM)
I probably spelled it wrong :)
westjlittle (Dec 29, 2008 5:05:22 PM)
no it was right
Jim_VA (Dec 29, 2008 5:05:28 PM)
lol
mommazooms (Dec 29, 2008 5:05:32 PM)
Happy New Year!
westjlittle (Dec 29, 2008 5:05:42 PM)
of, relating to, or causing stroke
westjlittle (Dec 29, 2008 5:06:02 PM)
French or Late Latin; French apoplectique, from Late Latin apoplecticus, from Greek apoplēktikos, from apoplēssein
mommazooms (Dec 29, 2008 5:06:12 PM)
Yep! He was that!
westjlittle (Dec 29, 2008 5:07:04 PM)
See you guys later
westjlittle (Dec 29, 2008 5:07:18 PM)
The germ machines are back
Jim_VA (Dec 29, 2008 5:07:20 PM)
take care see you next year
mommazooms (Dec 29, 2008 5:07:25 PM)
Bye!
mommazooms (Dec 29, 2008 5:07:26 PM)
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westjlittle (Dec 29, 2008 5:07:27 PM)
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Jim_VA (Dec 29, 2008 5:07:34 PM)
lol
Jim_VA (Dec 29, 2008 5:07:42 PM)
(This user has left DigiChat)