Living with ALS

mommazooms (Sep 15, 2008 1:58:49 PM)
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mommazooms (Sep 15, 2008 1:59:23 PM)
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mommazooms (Sep 15, 2008 1:59:23 PM)
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mommazooms (Sep 15, 2008 2:02:23 PM)
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Jim_VA (Sep 15, 2008 2:07:40 PM)
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mommazooms (Sep 15, 2008 2:08:13 PM)
Hi Jim!

Jim_VA (Sep 15, 2008 2:08:14 PM)
Hi Beth

Jim_VA (Sep 15, 2008 2:09:02 PM)
how are you

mommazooms (Sep 15, 2008 2:10:11 PM)
I'm well, thanks... You? When I go for my next clinic visit, I'm checking out their Roho cushions!

Jim_VA (Sep 15, 2008 2:10:45 PM)
I have one

Jim_VA (Sep 15, 2008 2:11:28 PM)
great here

mommazooms (Sep 15, 2008 2:11:29 PM)
Yes, that's where I got the idea! :)

Jim_VA (Sep 15, 2008 2:13:47 PM)
I told a lady that you were here Monday afternoons

Jim_VA (Sep 15, 2008 2:14:55 PM)
her mom has ALS

mommazooms (Sep 15, 2008 2:15:47 PM)
I need something different for a cushion! Really? Who? Ah, female POV!

Jim_VA (Sep 15, 2008 2:18:33 PM)
Her name is Dianne that's all I know now

mommazooms (Sep 15, 2008 2:19:24 PM)
Where didUmeet her?

Jim_VA (Sep 15, 2008 2:20:32 PM)
she got my e-mail from the website

Jim_VA (Sep 15, 2008 2:22:03 PM)
this all happened over the weekend

mommazooms (Sep 15, 2008 2:23:09 PM)
Great! I hope she shows up! Pardon me if I don't respond right away - football season has started for our son & Ralph is photographing it which means I'm editing them to post to the web :) I'm editing while chatting...

mommazooms (Sep 15, 2008 2:24:55 PM)
Oh, I asked Ralph about having dual monitors on a laptop & he said it can be done!

Jim_VA (Sep 15, 2008 2:25:29 PM)
I sent her instructions on getting a password

Jim_VA (Sep 15, 2008 2:25:59 PM)
no problem

Jim_VA (Sep 15, 2008 2:26:22 PM)
great

Jim_VA (Sep 15, 2008 2:27:29 PM)
my video card arrived

mommazooms (Sep 15, 2008 2:29:04 PM)
I'll find out what's needed to make it happen & let you know... That's great! When will it be installed?

Jim_VA (Sep 15, 2008 2:30:39 PM)
I will have to talk to my son

Jim_VA (Sep 15, 2008 2:34:22 PM)
I will put chat information on the website

mommazooms (Sep 15, 2008 2:35:37 PM)
Does he live close by? That'll be great!

Jim_VA (Sep 15, 2008 2:36:16 PM)
I can do that while you are editing

mommazooms (Sep 15, 2008 2:36:49 PM)
:)

Jim_VA (Sep 15, 2008 2:38:49 PM)
about 30 miles and the other one is 2 1/2 hours

mommazooms (Sep 15, 2008 2:39:32 PM)
close enuf!

Jim_VA (Sep 15, 2008 2:40:06 PM)
yep}

mommazooms (Sep 15, 2008 2:50:04 PM)
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mommazooms (Sep 15, 2008 2:50:54 PM)
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mommazooms (Sep 15, 2008 2:51:06 PM)
hi

Jim_VA (Sep 15, 2008 2:51:25 PM)
lol wb

mommazooms (Sep 15, 2008 2:51:43 PM)
:)

mommazooms (Sep 15, 2008 3:01:40 PM)
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mommazooms (Sep 15, 2008 3:01:48 PM)
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mommazooms (Sep 15, 2008 3:02:27 PM)
Hi again!

Jim_VA (Sep 15, 2008 3:03:16 PM)
lol wb again

mommazooms (Sep 15, 2008 3:10:02 PM)
I told my MDA rep to stop in here when she gets a chance. Idk when that will be, she's busier than a one armed paper hanger :D

Jim_VA (Sep 15, 2008 3:11:41 PM)
lol I can imagine

mommazooms (Sep 15, 2008 3:16:49 PM)
What games do you like to play online?

Jim_VA (Sep 15, 2008 3:18:03 PM)
cards

westjlittle (Sep 15, 2008 3:23:05 PM)
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mommazooms (Sep 15, 2008 3:23:42 PM)
Hi West!

Jim_VA (Sep 15, 2008 3:24:02 PM)
Hi Jim

westjlittle (Sep 15, 2008 3:26:45 PM)
hello!

westjlittle (Sep 15, 2008 3:26:51 PM)
got distracted

anna (Sep 15, 2008 3:27:22 PM)
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westjlittle (Sep 15, 2008 3:27:42 PM)
Hello Anna I'm west

anna (Sep 15, 2008 3:27:49 PM)
Hi--just came in to tell Jim tht my son did get his PEG

mommazooms (Sep 15, 2008 3:27:53 PM)
Hi Anna!

anna (Sep 15, 2008 3:28:05 PM)
Hi west and momma

anna (Sep 15, 2008 3:28:28 PM)
I am host on Weds night for Parents of Young Adults with DMD

Jim_VA (Sep 15, 2008 3:28:39 PM)
Hi Anna

westjlittle (Sep 15, 2008 3:28:48 PM)
I see

mommazooms (Sep 15, 2008 3:28:49 PM)
I'm Beth

anna (Sep 15, 2008 3:28:49 PM)
Jim was helping me get used to the idea of a feeding tube

westjlittle (Sep 15, 2008 3:29:34 PM)
He eats a lot of canned steak and Lobster but I can't find that in the store. (ha)

Jim_VA (Sep 15, 2008 3:29:36 PM)
glad to hear that,

Jim_VA (Sep 15, 2008 3:29:51 PM)
lol

anna (Sep 15, 2008 3:30:03 PM)
talking about a cat West?

westjlittle (Sep 15, 2008 3:30:30 PM)
Jim makes a funny about peg feeding time

westjlittle (Sep 15, 2008 3:30:41 PM)
"Time for lobster"

anna (Sep 15, 2008 3:30:49 PM)
oh----too new to it to enjoy a funny I guess

westjlittle (Sep 15, 2008 3:30:54 PM)
"Time form tbone"

Jim_VA (Sep 15, 2008 3:31:25 PM)
how is he doing with it

westjlittle (Sep 15, 2008 3:31:29 PM)
I'm still coughing

anna (Sep 15, 2008 3:31:47 PM)
it turned out that my phobia about seeing anything going thru a tube is not good

westjlittle (Sep 15, 2008 3:32:02 PM)
I've concluded it is food aspiration

Jim_VA (Sep 15, 2008 3:32:23 PM)
bummer jim

anna (Sep 15, 2008 3:32:26 PM)
I thought it was just a phobia against blood going thru a tube, but I have a lot to overcome

anna (Sep 15, 2008 3:32:38 PM)
My son aspirates quite a lot still

mommazooms (Sep 15, 2008 3:32:55 PM)
You've got to be careful West!

anna (Sep 15, 2008 3:32:58 PM)
he chokes on his own saliva

anna (Sep 15, 2008 3:33:13 PM)
west, do you have a Cough Assist?

westjlittle (Sep 15, 2008 3:33:16 PM)
I'm having trouble getting it out... don't have saliva problem yet

westjlittle (Sep 15, 2008 3:33:31 PM)
No..

westjlittle (Sep 15, 2008 3:33:45 PM)
going to Pulonologist soon

anna (Sep 15, 2008 3:33:50 PM)
you need one! it gets the aspirated bits out

Jim_VA (Sep 15, 2008 3:34:10 PM)
a lot of people depend on tubes

westjlittle (Sep 15, 2008 3:34:22 PM)
I was supposed to go tomorrwo but doctor cancelled... now oct 2

anna (Sep 15, 2008 3:34:54 PM)
when my son aspirates I need the Cough Assist, suction, bi-pap, and clapping back of lungs on the bed.

westjlittle (Sep 15, 2008 3:35:29 PM)
It sounds like PEG feeding is necessary now

westjlittle (Sep 15, 2008 3:35:53 PM)
It's taken me a week to get to that decision for me

anna (Sep 15, 2008 3:35:55 PM)
my son had it last Monday and is back at work today

Jim_VA (Sep 15, 2008 3:36:01 PM)
I have a cough assist

Jim_VA (Sep 15, 2008 3:36:25 PM)
wow

anna (Sep 15, 2008 3:36:40 PM)
we put getting a tube off longer than we should of

westjlittle (Sep 15, 2008 3:37:09 PM)
The only things I've eaten since THursday is fried zuchini and Gin/tonic. Everything else through the tube

Jim_VA (Sep 15, 2008 3:37:22 PM)
many do

anna (Sep 15, 2008 3:37:36 PM)
but--now to find the right formula that doesn't either block him up or give him the runs....

Jim_VA (Sep 15, 2008 3:38:00 PM)
gt is good

mommazooms (Sep 15, 2008 3:38:29 PM)
Mmmm... Fried zucchini sounds great!

westjlittle (Sep 15, 2008 3:38:48 PM)
You missed my saga over the last six weeks. I figured out I was allergic to Osmolite

anna (Sep 15, 2008 3:38:50 PM)
I was thinking the gin sounded great Momma

westjlittle (Sep 15, 2008 3:39:15 PM)
Gin kills the bacteria in the lungs!

anna (Sep 15, 2008 3:39:34 PM)
yes, of course you need it for "medicinal value"

westjlittle (Sep 15, 2008 3:39:45 PM)
Zuchiuni is from my garden

Jim_VA (Sep 15, 2008 3:40:06 PM)
there are all kinds of formula

anna (Sep 15, 2008 3:40:22 PM)
we were started with "TwoCal"

westjlittle (Sep 15, 2008 3:40:26 PM)
I'm also partial to pomogranite martinis for the anit-oxidents

anna (Sep 15, 2008 3:40:34 PM)
lol

mommazooms (Sep 15, 2008 3:41:02 PM)
Oh! I completely missed that! I thought it was a supplement drink :) Yes! Those are better than zucchini!

Jim_VA (Sep 15, 2008 3:41:05 PM)
lol

anna (Sep 15, 2008 3:41:54 PM)
what did the Osmolite do to you?

Jim_VA (Sep 15, 2008 3:42:24 PM)
I like green tea

westjlittle (Sep 15, 2008 3:42:48 PM)
I had runny nose with 'clear' mucus. That was then pushed into my lungs at night with the bipap.

anna (Sep 15, 2008 3:43:10 PM)
oh my

westjlittle (Sep 15, 2008 3:43:20 PM)
It was a long process to figure out I was allergic

westjlittle (Sep 15, 2008 3:43:47 PM)
Ruling out things then the doctor said... maybe you are allergic to something

anna (Sep 15, 2008 3:44:08 PM)
what are you trying now for formula?

westjlittle (Sep 15, 2008 3:44:22 PM)
I user ensure+

Jim_VA (Sep 15, 2008 3:44:28 PM)
piates

Jim_VA (Sep 15, 2008 3:44:39 PM)
o

anna (Sep 15, 2008 3:45:04 PM)
my son drank ENsure Plus before all this--also Carnation Instant Breakfast in a can has 560 cals per 8 ounces

westjlittle (Sep 15, 2008 3:45:40 PM)
The worst part of it was that at one point we were convinced it was onlu aspiration. I took more of the stuff and got worse

anna (Sep 15, 2008 3:45:42 PM)
opiates?

Jim_VA (Sep 15, 2008 3:46:18 PM)
jevity is popular

anna (Sep 15, 2008 3:46:25 PM)
I know when my son aspirates, but found out recently not everyone knows--something about "silent aspiration"

westjlittle (Sep 15, 2008 3:46:27 PM)
I have now concluded it was aspiration at first, excerbated by the Osmolite.

anna (Sep 15, 2008 3:48:11 PM)
our TF set-up came with a little backpack in case son wants to take his lunch to work

Jim_VA (Sep 15, 2008 3:49:36 PM)
I take 6 cans of glucerna per day

anna (Sep 15, 2008 3:49:50 PM)
yikes

westjlittle (Sep 15, 2008 3:49:59 PM)
Jim - do you do one at a time?

westjlittle (Sep 15, 2008 3:50:18 PM)
Meaning not more than one can at a dosing?

anna (Sep 15, 2008 3:50:32 PM)
putting on the feedbag?

Jim_VA (Sep 15, 2008 3:50:59 PM)
yes mostly

westjlittle (Sep 15, 2008 3:51:33 PM)
How much water do you do per day?

Jim_VA (Sep 15, 2008 3:51:51 PM)
sometimes two

Jim_VA (Sep 15, 2008 3:53:12 PM)
an equal amount

anna (Sep 15, 2008 3:54:48 PM)
can you mix Miralax into the formulas?

anna (Sep 15, 2008 3:55:37 PM)
or water bolus it in?

Jim_VA (Sep 15, 2008 3:55:57 PM)
dehydration ain't fun

anna (Sep 15, 2008 3:56:21 PM)
no--we dealt with that last month

Jim_VA (Sep 15, 2008 3:57:04 PM)
we do water before and after

anna (Sep 15, 2008 3:57:22 PM)
yes, they told us to do that too

Jim_VA (Sep 15, 2008 3:58:14 PM)
my bp was 70/50

anna (Sep 15, 2008 3:58:31 PM)
but, I have a lot to learn and need courage to develope.

anna (Sep 15, 2008 3:59:09 PM)
when son was in hospital overnite after tube placement he hit 60/35--and they couldn't get in iv in

anna (Sep 15, 2008 3:59:52 PM)
finally nurse just shut the door and left--couldn't bear to see what bp was I guess

Jim_VA (Sep 15, 2008 4:00:12 PM)
clean it every day

anna (Sep 15, 2008 4:00:39 PM)
how do you clean it on the outside? inside?

Jim_VA (Sep 15, 2008 4:01:06 PM)
I pass out

westjlittle (Sep 15, 2008 4:01:14 PM)
I just clean in the shower

westjlittle (Sep 15, 2008 4:01:28 PM)
Also you must flush teh tube with water

anna (Sep 15, 2008 4:01:59 PM)
we are still cleaning wound site--they said to turn tube a bit when you clean it?

Jim_VA (Sep 15, 2008 4:02:18 PM)
put papaya juice inside

anna (Sep 15, 2008 4:02:59 PM)
I though that was just for unclogging? like using Coke or meat tenderizer?

Jim_VA (Sep 15, 2008 4:03:35 PM)
we use saline outside

Jim_VA (Sep 15, 2008 4:05:07 PM)
yes that will unclog also

anna (Sep 15, 2008 4:07:06 PM)
thank you all for your advice. with your permission I will check back from time to time for advice since this is all new to me.

Jim_VA (Sep 15, 2008 4:07:09 PM)
never heard of using Adolph's

anna (Sep 15, 2008 4:07:33 PM)
it was in my "guide to tube feeding"

Jim_VA (Sep 15, 2008 4:07:44 PM)
anytime

Jim_VA (Sep 15, 2008 4:08:39 PM)
must work

anna (Sep 15, 2008 4:09:08 PM)
1Tablespoon meat tenderizer, 1/2 tsp baking soda--mix with 30 ml warm water and let sit in tube 30-60 mins

anna (Sep 15, 2008 4:09:38 PM)
so it says. also use cranberry juice or coke.

anna (Sep 15, 2008 4:09:49 PM)
thanks again

anna (Sep 15, 2008 4:09:58 PM)
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Jim_VA (Sep 15, 2008 4:10:49 PM)
brb

mommazooms (Sep 15, 2008 4:12:30 PM)
Coke would work for me! :)

mommazooms (Sep 15, 2008 4:22:27 PM)
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mommazooms (Sep 15, 2008 4:24:42 PM)
(This user has entered Living with ALS)

mommazooms (Sep 15, 2008 4:24:42 PM)
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mommazooms (Sep 15, 2008 4:27:39 PM)
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mommazooms (Sep 15, 2008 4:29:23 PM)
I'm reeealy tired of having to sign in 3 or 4 times/chat!

Jim_VA (Sep 15, 2008 4:29:51 PM)
yummy smoked eel and wasabi

westjlittle (Sep 15, 2008 4:29:53 PM)
I don't have that problem

westjlittle (Sep 15, 2008 4:30:20 PM)
How are you connected to internet?

mommazooms (Sep 15, 2008 4:31:07 PM)
Cable through Cox

Jim_VA (Sep 15, 2008 4:31:22 PM)
I don't either

westjlittle (Sep 15, 2008 4:31:30 PM)
should be reliable

westjlittle (Sep 15, 2008 4:32:07 PM)
directly connected to modem or wireless?

mommazooms (Sep 15, 2008 4:32:43 PM)
Maybe it's my PC... Direct connect

Jim_VA (Sep 15, 2008 4:34:13 PM)
do you minimize the login page

westjlittle (Sep 15, 2008 4:34:21 PM)
what browser are you using?

mommazooms (Sep 15, 2008 4:35:57 PM)
Yes & IE7, the one with the tabs for new windows

westjlittle (Sep 15, 2008 4:36:42 PM)
I tried to go to the digichat tech support but it was blocked at work

westjlittle (Sep 15, 2008 4:37:10 PM)
go to www.digichat.com and poke around

Jim_VA (Sep 15, 2008 4:37:25 PM)
.ah

mommazooms (Sep 15, 2008 4:37:57 PM)
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westjlittle (Sep 15, 2008 4:38:58 PM)
so, you said that the movie didn't work too well?

westjlittle (Sep 15, 2008 4:39:35 PM)
I had trouble getting it to run on my sisters vista laptop no sound

Jim_VA (Sep 15, 2008 4:39:42 PM)
K9m

westjlittle (Sep 15, 2008 4:40:06 PM)
K9m?

mommazooms (Sep 15, 2008 4:40:20 PM)
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mommazooms (Sep 15, 2008 4:40:31 PM)
Ok, that was my fault! I tried to go to digichat and used the login window :(

Jim_VA (Sep 15, 2008 4:40:53 PM)
It is fine now

westjlittle (Sep 15, 2008 4:41:25 PM)
What did you think? Could you understand anything I said?

Jim_VA (Sep 15, 2008 4:42:06 PM)
that will do it

Jim_VA (Sep 15, 2008 4:43:06 PM)
very little

westjlittle (Sep 15, 2008 4:43:46 PM)
I almost setup my dynavox but I was in the middle of the 'illness'

mommazooms (Sep 15, 2008 4:43:47 PM)
West, I didn't get anything after I responded to what browser I'm using... Sorry

Jim_VA (Sep 15, 2008 4:43:58 PM)
I cut it down

westjlittle (Sep 15, 2008 4:44:10 PM)
We shifted to talking about the movie I sent to Jim

westjlittle (Sep 15, 2008 4:44:31 PM)
We were able to transfer it over Yahoo IM but it took 1.5 hours

mommazooms (Sep 15, 2008 4:44:34 PM)
Ok

westjlittle (Sep 15, 2008 4:44:53 PM)
Did you find anything usefull?

mommazooms (Sep 15, 2008 4:45:27 PM)
Wow! No, not yet.

westjlittle (Sep 15, 2008 4:45:51 PM)
quicker than snail mail!

Jim_VA (Sep 15, 2008 4:46:47 PM)
I only cut the first part

westjlittle (Sep 15, 2008 4:47:29 PM)
did you put it online?

Jim_VA (Sep 15, 2008 4:49:03 PM)
It startes we have a special guest

Jim_VA (Sep 15, 2008 4:49:36 PM)
no not yet

mommazooms (Sep 15, 2008 4:51:08 PM)
Check this out! http://msn.foxsports.com/mlb/story/8527772?MSNHPHCP&GT1=39002

Jim_VA (Sep 15, 2008 4:52:13 PM)
I think my security was too high

westjlittle (Sep 15, 2008 4:53:04 PM)
its a forbidden site at work

mommazooms (Sep 15, 2008 4:53:46 PM)
MSN's link to ALS http://health.msn.com/health-topics/neurological-cognitive-health/articlepage.aspx?cp-documentid=100064679&GT1=31036

mommazooms (Sep 15, 2008 4:54:07 PM)
Oh, sorry!

westjlittle (Sep 15, 2008 4:55:11 PM)
They block the strangest things like fox and cbs sports are blocked but not sports illustrated

westjlittle (Sep 15, 2008 4:55:38 PM)
They block the digichat website but not the digichat service

Jim_VA (Sep 15, 2008 4:56:39 PM)
huh

westjlittle (Sep 15, 2008 4:57:05 PM)
that's what I say all da

westjlittle (Sep 15, 2008 4:57:22 PM)
daY

mommazooms (Sep 15, 2008 4:57:26 PM)
Lol!

Jim_VA (Sep 15, 2008 4:57:52 PM)
LOL

mommazooms (Sep 15, 2008 4:59:57 PM)
Ok guys! I'm off to have dinner... CUnext week! TTFN!

westjlittle (Sep 15, 2008 5:00:21 PM)
sounds like a good idea

mommazooms (Sep 15, 2008 5:00:30 PM)
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westjlittle (Sep 15, 2008 5:00:35 PM)
Bye Jim

Jim_VA (Sep 15, 2008 5:01:14 PM)
take care

westjlittle (Sep 15, 2008 5:01:21 PM)
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Jim_VA (Sep 15, 2008 5:02:00 PM)
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