Living with ALS

mommazooms (Oct 6, 2008 1:57:08 PM)
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mommazooms (Oct 6, 2008 1:57:17 PM)
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DanG (Oct 6, 2008 1:58:26 PM)
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DanG (Oct 6, 2008 1:59:07 PM)
hi

mommazooms (Oct 6, 2008 1:59:11 PM)
Hi Dan! HowRUdoing? I'm gr8!

DanG (Oct 6, 2008 1:59:42 PM)
im good.

mommazooms (Oct 6, 2008 2:01:58 PM)
What's the weather like in your area? It's cold & sunny here in CT :)

westjlittle (Oct 6, 2008 2:04:19 PM)
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westjlittle (Oct 6, 2008 2:04:37 PM)
Hello everyone!

mommazooms (Oct 6, 2008 2:04:52 PM)
Hi West!

westjlittle (Oct 6, 2008 2:06:13 PM)
Anything going on? I'm tired... went to texas colorado football game onsat

westjlittle (Oct 6, 2008 2:06:40 PM)
Well worth it ... TX won

mommazooms (Oct 6, 2008 2:07:38 PM)
No, Dan & I were just talking weather... Any snow yet West?

westjlittle (Oct 6, 2008 2:08:08 PM)
In the mountains just rain for us- could happen at anytime though

mommazooms (Oct 6, 2008 2:08:48 PM)
Lol! I'm ready for it!

westjlittle (Oct 6, 2008 2:11:14 PM)
Snow is bad... it makes that much harder to walk

mommazooms (Oct 6, 2008 2:11:24 PM)
Dan- any luck with finding other living arrangements?

mommazooms (Oct 6, 2008 2:12:26 PM)
Yeah, but I just drive through it :)

DanG (Oct 6, 2008 2:12:45 PM)
No...just have one facility left to get back to me. Where is there snow?

westjlittle (Oct 6, 2008 2:13:13 PM)
I live in Denver... snow could happen at any time

mommazooms (Oct 6, 2008 2:14:22 PM)
I'm saying prayers that you find something soon!

DanG (Oct 6, 2008 2:15:02 PM)
Thank You! That is the only thing that is going to get it.

DanG (Oct 6, 2008 2:19:48 PM)
I always wanted to visit Colorado...esp. Colorado Springs

DanG (Oct 6, 2008 2:20:55 PM)
Anybody using one of these vibrating vest thngs that helps loosen up your chest?

mommazooms (Oct 6, 2008 2:21:23 PM)
No

westjlittle (Oct 6, 2008 2:21:29 PM)
no

DanG (Oct 6, 2008 2:22:24 PM)
Something New...Im trying it but don't like it ..Hurts too much..

mommazooms (Oct 6, 2008 2:22:40 PM)
What does it loosen, secretions in the lungs?

DanG (Oct 6, 2008 2:23:22 PM)
yes, it takes the place of someone beating on your chest.

mommazooms (Oct 6, 2008 2:24:04 PM)
I would think it would hurt - we don't have much muscles there!

DanG (Oct 6, 2008 2:24:46 PM)
no...Im 6Ft 118lbs wet.

DanG (Oct 6, 2008 2:25:28 PM)
It is $16,000.00

mommazooms (Oct 6, 2008 2:26:17 PM)
Yikes! Double Yikes! Any luck putting more calories in your day?

DanG (Oct 6, 2008 2:26:59 PM)
trying to take an extra can a day to start off with.

mommazooms (Oct 6, 2008 2:29:21 PM)
But that's only an additional 250, right? Have you talked to the dietician? They could give you suggestions! I've asked my dietician about you, haven't heard back yet...

DanG (Oct 6, 2008 2:31:29 PM)
Ive got a email into her awaiting a reply. Thank You for doing that.

mommazooms (Oct 6, 2008 2:38:39 PM)
You're welcome :) How is your stoma? Jim said it was small...

Jim_VA (Oct 6, 2008 2:39:33 PM)
(This user has entered Living with ALS)

mommazooms (Oct 6, 2008 2:39:58 PM)
Hi Jim!

Jim_VA (Oct 6, 2008 2:41:56 PM)
Hi Dan

Jim_VA (Oct 6, 2008 2:42:49 PM)
how are you

DanG (Oct 6, 2008 2:44:38 PM)
Hi Jim.....I am waiting on Lake Taylor.. How r u doin

Jim_VA (Oct 6, 2008 2:46:16 PM)
I found a video card

mommazooms (Oct 6, 2008 2:47:01 PM)
Now what?

Jim_VA (Oct 6, 2008 2:47:46 PM)
I am great

DanG (Oct 6, 2008 2:47:56 PM)
good ....i could not fine one...what stoma are you referring to

mommazooms (Oct 6, 2008 2:49:03 PM)
I thought you were having a problem with your trach...

Jim_VA (Oct 6, 2008 2:49:13 PM)
Hi Beth

mommazooms (Oct 6, 2008 2:49:45 PM)
Hi Jim!

Jim_VA (Oct 6, 2008 2:50:43 PM)
how are you

mommazooms (Oct 6, 2008 2:51:44 PM)
Gr8! You?

DanG (Oct 6, 2008 2:51:53 PM)
no problems with trach. Beth..TY

Jim_VA (Oct 6, 2008 2:52:38 PM)
sae here

Jim_VA (Oct 6, 2008 2:55:54 PM)
I am changing the trach tonight

mommazooms (Oct 6, 2008 3:00:00 PM)
I'm going for a fitting tomorrow morning for a Roho seat cushion! I hope I can get one soon!

mommazooms (Oct 6, 2008 3:01:33 PM)
After 12 years in a Jay2 gel cushion, my a$$ is rebeling :)

Jim_VA (Oct 6, 2008 3:02:11 PM)
when,is Lake Taylor to contact you

Jim_VA (Oct 6, 2008 3:03:17 PM)
lol Beth

DanG (Oct 6, 2008 3:03:21 PM)
supposedly today.. but it is late already. Did Ron have any words of wisdom?

mommazooms (Oct 6, 2008 3:04:03 PM)
:P

DanG (Oct 6, 2008 3:04:19 PM)
what is lead time on getting one of those cushions Beth?

Jim_VA (Oct 6, 2008 3:05:45 PM)
did not talk to him

mommazooms (Oct 6, 2008 3:06:06 PM)
I have no idea! I'm hoping they can measure/balance/etc. tomorrow and hope to get one in a week?

DanG (Oct 6, 2008 3:06:49 PM)
Thats a pretty good turnaround.

mommazooms (Oct 6, 2008 3:08:15 PM)
They have to “evaluate” me and my butt and then recommend a cushion. I looked at the site and it's not like they build a cushion for your butt :)

DanG (Oct 6, 2008 3:09:26 PM)
I saw a ROHO cushion on the Allegro Medical site for wheelchairs bottoms. They were about $100. Obviously not the same as what you are looking at?

Jim_VA (Oct 6, 2008 3:10:02 PM)
I think the State sent him there

mommazooms (Oct 6, 2008 3:10:23 PM)
They have to figure out what's the best fit. I'm HOPING that's the turn around! I don't know Dan...

Jim_VA (Oct 6, 2008 3:12:24 PM)
I ordered mine

DanG (Oct 6, 2008 3:14:04 PM)
you remember from who Jim?

mommazooms (Oct 6, 2008 3:14:45 PM)
The site price list goes from $450 to $1,000

Jim_VA (Oct 6, 2008 3:17:02 PM)
i think mine was $270

westjlittle (Oct 6, 2008 3:17:41 PM)
I'm back got called into meeting

mommazooms (Oct 6, 2008 3:18:03 PM)
Dan- I thought I could tell my neurologist that I wanted one, he'd write me a Rx and I'd order one! They told me I'd have to go to PT and be evaluated

DanG (Oct 6, 2008 3:18:42 PM)
What a crock!

mommazooms (Oct 6, 2008 3:18:46 PM)
WB West!

mommazooms (Oct 6, 2008 3:20:50 PM)
Idk, I'll let you know what happens at the appointment :) I'm going to ask her why an eval's needed!

DanG (Oct 6, 2008 3:20:51 PM)
Jim, you remember the name of the company that you got your ROHO cushion from?

Jim_VA (Oct 6, 2008 3:22:01 PM)
the cheapest place that I could find Dan

DanG (Oct 6, 2008 3:22:05 PM)
She will tell you that it take''s their expertise to do it "properly". That be their job!

DanG (Oct 6, 2008 3:22:15 PM)
oh ok!

westjlittle (Oct 6, 2008 3:22:52 PM)
I had my FVC measured last week 38% down from 50% in May

Jim_VA (Oct 6, 2008 3:23:21 PM)
wow

westjlittle (Oct 6, 2008 3:23:43 PM)
Scheduled to get cough assist on 28th

westjlittle (Oct 6, 2008 3:24:09 PM)
I have been dropping about 1.5% a month

Jim_VA (Oct 6, 2008 3:24:16 PM)
good

mommazooms (Oct 6, 2008 3:24:17 PM)
Lol! Dan, I'm sure she will

mommazooms (Oct 6, 2008 3:25:18 PM)
Wow West! Will you vent?

westjlittle (Oct 6, 2008 3:25:41 PM)
That's the plan...

westjlittle (Oct 6, 2008 3:26:44 PM)
As I understand it, most people start bipap allday around 30-25%

westjlittle (Oct 6, 2008 3:26:53 PM)
Vent at 15%

mommazooms (Oct 6, 2008 3:27:11 PM)
Will you still be able to work?

westjlittle (Oct 6, 2008 3:27:44 PM)
playing by ear... don't know

Jim_VA (Oct 6, 2008 3:27:54 PM)
I will see if I still have the receipt Dan brb

westjlittle (Oct 6, 2008 3:28:33 PM)
I think the prudent plan will be to go on disablity whenschool lets out in spring

westjlittle (Oct 6, 2008 3:28:49 PM)
Assuming the same progresssion

DanG (Oct 6, 2008 3:31:03 PM)
i can look on google jim....that's ok...

mommazooms (Oct 6, 2008 3:34:05 PM)
Well, keep an eye on the progression and get out at the right time!

Jim_VA (Oct 6, 2008 3:34:55 PM)
I doon't see it

Jim_VA (Oct 6, 2008 3:36:32 PM)
I have had it 4 4 years

Jim_VA (Oct 6, 2008 3:39:03 PM)
may have been Southwest Medical

Jim_VA (Oct 6, 2008 3:40:21 PM)
yum yum time j

mommazooms (Oct 6, 2008 3:41:01 PM)
Lobster again?

DanG (Oct 6, 2008 3:41:18 PM)
pour that double chocolate and go bro..

Jim_VA (Oct 6, 2008 3:41:47 PM)
brb lol locks

DanG (Oct 6, 2008 3:42:29 PM)
r u on vent Beth?

Jim_VA (Oct 6, 2008 3:42:46 PM)
carp

DanG (Oct 6, 2008 3:43:19 PM)
well crap

mommazooms (Oct 6, 2008 3:44:00 PM)
No, I'm still breathing on my own. I had an FVC of 88% two weeks ago.

DanG (Oct 6, 2008 3:44:58 PM)
Good.

DanG (Oct 6, 2008 3:45:19 PM)
I never could get used to the Bipap.

mommazooms (Oct 6, 2008 3:45:29 PM)
TY

westjlittle (Oct 6, 2008 3:47:04 PM)
It took me a month before bipap was comfortable

westjlittle (Oct 6, 2008 3:47:23 PM)
Now I like it a lot

mommazooms (Oct 6, 2008 3:48:20 PM)
My husband has a C-Pap for his sleep apnea & I tried to use it - I couldn't do it either! I'm sure I could when I need it, but not now!

westjlittle (Oct 6, 2008 3:48:59 PM)
Bipap is easier since it has two levels of pressure

mommazooms (Oct 6, 2008 3:49:48 PM)
That would be easier

westjlittle (Oct 6, 2008 3:49:54 PM)
You have to get in breathing rhythm

DanG (Oct 6, 2008 3:50:09 PM)
transition to vent is much easier and more natural like. At least for me.

mommazooms (Oct 6, 2008 3:55:06 PM)
West- Yours was bulbar onset?

westjlittle (Oct 6, 2008 3:55:52 PM)
Actually, my first was foot drop

mommazooms (Oct 6, 2008 3:56:56 PM)
Do you have AFO's?

westjlittle (Oct 6, 2008 3:56:58 PM)
I had noticed weakness and cramping in legs in early 2006. I thought that I twisted ankle and needed rehab

westjlittle (Oct 6, 2008 3:57:25 PM)
Then by september I noticed slurred speech - Yes on AFO

westjlittle (Oct 6, 2008 3:57:49 PM)
Saw neuro had DX in OCt of ALS

mommazooms (Oct 6, 2008 3:59:14 PM)
2 feet or 1? I don't like October for that reason - I was dx 16 years ago today

Jim_VA (Oct 6, 2008 4:00:28 PM)
wow

westjlittle (Oct 6, 2008 4:00:32 PM)
Both- I can't move anything below my knees

mommazooms (Oct 6, 2008 4:01:49 PM)
Wow, didn't know that! How do you get around - Ew/c?

westjlittle (Oct 6, 2008 4:03:36 PM)
I use walker. My thighs still work enough. No stairs

westjlittle (Oct 6, 2008 4:04:27 PM)
It won't be long though. anytime I use the WC or scooter I feel much weaker

westjlittle (Oct 6, 2008 4:04:50 PM)
I figure as soon as Istart with theWC that'll be it

mommazooms (Oct 6, 2008 4:05:18 PM)
Oh, I forgot you were just sized for a w/c! What an idiot I am smetimes :)

westjlittle (Oct 6, 2008 4:06:54 PM)
I can't remember the day of DX but my wife remembers the shirt I was wearing and won't let me wear it

mommazooms (Oct 6, 2008 4:07:06 PM)
Any time frame on the latest w/c?

mommazooms (Oct 6, 2008 4:07:36 PM)
That's funny West!

westjlittle (Oct 6, 2008 4:08:06 PM)
They said two weeks a week ago... I assume this month

mommazooms (Oct 6, 2008 4:08:41 PM)
Yay!

westjlittle (Oct 6, 2008 4:09:48 PM)
I guess my insurance is pretty good. I have had no problems this year. I'm going to cost them at least a $110K

mommazooms (Oct 6, 2008 4:10:31 PM)
That's what it's there for!

Jim_VA (Oct 6, 2008 4:11:02 PM)
I fell 4 or 5 times before I wised 7u

westjlittle (Oct 6, 2008 4:11:45 PM)
"7u" Is that due to brain injury?

Jim_VA (Oct 6, 2008 4:11:49 PM)
up

Jim_VA (Oct 6, 2008 4:12:06 PM)
lol

mommazooms (Oct 6, 2008 4:12:20 PM)
Ow!

westjlittle (Oct 6, 2008 4:12:46 PM)
I only needed one wack on the head by the concrete in my garage to wise up!

mommazooms (Oct 6, 2008 4:13:10 PM)
Lol!

westjlittle (Oct 6, 2008 4:13:36 PM)
Apparently rocks are harder than concrete!

Jim_VA (Oct 6, 2008 4:14:48 PM)
that will do it

mommazooms (Oct 6, 2008 4:15:25 PM)
I'll be back in 15 minutes!

Jim_VA (Oct 6, 2008 4:15:37 PM)
K

DanG (Oct 6, 2008 4:17:14 PM)
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westjlittle (Oct 6, 2008 4:17:17 PM)
The TN AL football game is coming up. Are we going to wager somthing?

Jim_VA (Oct 6, 2008 4:17:34 PM)
I fee in the br once

westjlittle (Oct 6, 2008 4:18:12 PM)
I took the boys to the TX CU football game on Sat. All they wanted to see was Ralphie

DanG (Oct 6, 2008 4:18:38 PM)
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Jim_VA (Oct 6, 2008 4:20:00 PM)
TN STINKS!

westjlittle (Oct 6, 2008 4:20:49 PM)
I figure I can't go wrong this year. TX and AL are both up at the top.

westjlittle (Oct 6, 2008 4:22:34 PM)
I really lucked out at the Cu game. My ticket was in an area with no WC access so they let me into the CU booster WC area. Some of them were not happy to see four raving TX fans in the area. Fortunately, two of tehm were kids

Jim_VA (Oct 6, 2008 4:23:29 PM)
boosters sent a moving van to

westjlittle (Oct 6, 2008 4:24:44 PM)
I'll send you pics later

Jim_VA (Oct 6, 2008 4:25:17 PM)
Fumer[s

Jim_VA (Oct 6, 2008 4:25:30 PM)
ok

Jim_VA (Oct 6, 2008 4:27:08 PM)
MO is good

westjlittle (Oct 6, 2008 4:28:47 PM)
We'll find out how good OK and Mizzu are in the next two weeks. They both play TX. Whoever wins out will be in driver's seat for #1

Jim_VA (Oct 6, 2008 4:30:49 PM)
it wouldn't surprise me to see TN beat AL

mommazooms (Oct 6, 2008 4:32:19 PM)
I'm back :)

Jim_VA (Oct 6, 2008 4:32:32 PM)
that is at TN

Jim_VA (Oct 6, 2008 4:33:23 PM)
wb

westjlittle (Oct 6, 2008 4:34:04 PM)
We're on football beth. uconn got beat this week right?

mommazooms (Oct 6, 2008 4:34:43 PM)
Yeah, they got beat!

westjlittle (Oct 6, 2008 4:35:11 PM)
Have you guys ever tried to find Wc tickets online? I looked at stubhub and there was no way to search for them any ideas?

Jim_VA (Oct 6, 2008 4:35:42 PM)
how about Vandy

westjlittle (Oct 6, 2008 4:36:13 PM)
I haven't see a game. Missed auburn

westjlittle (Oct 6, 2008 4:36:28 PM)
Time will tell with SEC

westjlittle (Oct 6, 2008 4:41:17 PM)
Dan who do root for?

DanG (Oct 6, 2008 4:41:38 PM)
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Jim_VA (Oct 6, 2008 4:41:48 PM)
North Carolina spanked CT

mommazooms (Oct 6, 2008 4:42:49 PM)
For tickets, I would think the school that's playing would sell them... ESPN has StubHub tickets for games - http://sports.espn.go.com/ncf/schedules?week=7&season=2&year=2008&groupId=80

mommazooms (Oct 6, 2008 4:43:17 PM)
Yes they did

westjlittle (Oct 6, 2008 4:43:43 PM)
School tickets are usually sold out. Need scalper but need scalper that has WC seats

mommazooms (Oct 6, 2008 4:44:08 PM)
Lol!

mommazooms (Oct 6, 2008 4:45:29 PM)
Yeah, school tix probably need to be bought a year ahead of time!

Jim_VA (Oct 6, 2008 4:45:43 PM)
CT was looking good too

mommazooms (Oct 6, 2008 4:47:39 PM)
They're still looking good :)

Jim_VA (Oct 6, 2008 4:48:54 PM)
you want to see the Buffs

westjlittle (Oct 6, 2008 4:49:31 PM)
No - just talking in general - like Broncos tickets

Jim_VA (Oct 6, 2008 4:50:17 PM)
ah

mommazooms (Oct 6, 2008 4:50:47 PM)
ur son plays football for his school - they are 4-0 and they are handily beating their opponents

Jim_VA (Oct 6, 2008 4:52:10 PM)
nice

mommazooms (Oct 6, 2008 4:54:34 PM)
So far so good!

Jim_VA (Oct 6, 2008 4:55:59 PM)
do you go to the games

mommazooms (Oct 6, 2008 4:57:37 PM)
Yes! They have bleachers with cut outs in the benches for w/c!

Jim_VA (Oct 6, 2008 4:58:34 PM)
great

mommazooms (Oct 6, 2008 4:58:55 PM)
I have a fleece blanket I/we made that keeps me toasty warm!

mommazooms (Oct 6, 2008 4:59:37 PM)
They play every Friday night...

Jim_VA (Oct 6, 2008 4:59:47 PM)
nice

mommazooms (Oct 6, 2008 5:02:23 PM)
I gotta go men, have a great week and keep smiling - it makes people wonder what you're up to! :) TTFN!

Jim_VA (Oct 6, 2008 5:02:34 PM)
well it is time to go take care

Jim_VA (Oct 6, 2008 5:02:48 PM)
ttyl

mommazooms (Oct 6, 2008 5:02:49 PM)
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Jim_VA (Oct 6, 2008 5:03:50 PM)
bye Jim