Living with ALS

DanG (Oct 1, 2008 6:21:50 PM)
(This user has entered Living with ALS)

DanG (Oct 1, 2008 6:22:35 PM)
Hoy Jim!

Jim_VA (Oct 1, 2008 6:23:06 PM)
Hi Dan

Jim_VA (Oct 1, 2008 6:24:47 PM)
how are you

DanG (Oct 1, 2008 6:25:25 PM)
Good....How have u been doing?

Jim_VA (Oct 1, 2008 6:27:00 PM)
did you try any of that stuff yet

Jim_VA (Oct 1, 2008 6:27:57 PM)
I am great ty

DanG (Oct 1, 2008 6:29:05 PM)
refresh my ol memory Jim

Jim_VA (Oct 1, 2008 6:30:32 PM)
anything from Lake Taylor

Jim_VA (Oct 1, 2008 6:31:33 PM)
that trach stuff

DanG (Oct 1, 2008 6:32:11 PM)
yes, my social worker from ALSA GA calls her daily and the admin. director "said" she has me on the top of the list.

Jim_VA (Oct 1, 2008 6:32:57 PM)
great

DanG (Oct 1, 2008 6:33:09 PM)
Yes I tried the towel strip for padding and it helps quite a bit.

Jim_VA (Oct 1, 2008 6:35:01 PM)
glad to hear that

DanG (Oct 1, 2008 6:35:09 PM)
found 2 more places in Penn. No vacancies but at least they have my paperwork.

Jim_VA (Oct 1, 2008 6:36:11 PM)
wow where

DanG (Oct 1, 2008 6:38:26 PM)
Garden Spring Center and Laurel Center...just a min and I will find my paper with where they are

DanG (Oct 1, 2008 6:42:58 PM)
WILLOW Grove PA and the other one is outside Pittsburgh.

Jim_VA (Oct 1, 2008 6:43:33 PM)
ok are they expensive

Jim_VA (Oct 1, 2008 6:43:57 PM)
ah

DanG (Oct 1, 2008 6:44:22 PM)
They are Medicare/Medicaid

DanG (Oct 1, 2008 6:46:24 PM)
They take all your money but $50.00 a month plus all your assets

Jim_VA (Oct 1, 2008 6:46:32 PM)
but they get your cash first

Jim_VA (Oct 1, 2008 6:47:13 PM)
ok I see

DanG (Oct 1, 2008 6:47:42 PM)
now i know why my grandparents did not use banks.

Jim_VA (Oct 1, 2008 6:48:19 PM)
yep

Jim_VA (Oct 1, 2008 6:48:45 PM)
It is terrible

DanG (Oct 1, 2008 6:50:05 PM)
I know. My first choice is Lake Taylor though. It looks like a place I could be happy at.

Jim_VA (Oct 1, 2008 6:51:27 PM)
they have us by the A$$

DanG (Oct 1, 2008 6:53:36 PM)
You said it!... Thank God for people like your wife that you don't have to go through this part this d$$$ disease!

Jim_VA (Oct 1, 2008 6:55:17 PM)
not, yet anyway

DanG (Oct 1, 2008 6:55:49 PM)
(Har!)

Jim_VA (Oct 1, 2008 6:57:12 PM)
too much tied up in property

Jim_VA (Oct 1, 2008 6:58:04 PM)
the economy is rough

Jim_VA (Oct 1, 2008 7:00:54 PM)
I still have some cash

DanG (Oct 1, 2008 7:01:25 PM)
It is very difficult to get gas down here. No money to borrow! This is the "worst" recession, I have ever seen.

Jim_VA (Oct 1, 2008 7:02:26 PM)
me too

Jim_VA (Oct 1, 2008 7:06:10 PM)
we are paying taxes and insurance on 3 places

DanG (Oct 1, 2008 7:06:28 PM)
3.. where is the third?

Jim_VA (Oct 1, 2008 7:08:20 PM)
on the lower Potomac River

DanG (Oct 1, 2008 7:09:44 PM)
Consider yourself fortunate!

Jim_VA (Oct 1, 2008 7:10:14 PM)
close to the Chesapeake Bay

DanG (Oct 1, 2008 7:10:42 PM)
That sound freaking NICE

Jim_VA (Oct 1, 2008 7:11:06 PM)
killing me now

Jim_VA (Oct 1, 2008 7:12:02 PM)
3.5 acres

DanG (Oct 1, 2008 7:13:04 PM)
I spoke to the ALSA National office yesterday and spoke to the Director for Patient Services originally about a nursing home.

Jim_VA (Oct 1, 2008 7:14:07 PM)
It was nice

Jim_VA (Oct 1, 2008 7:14:52 PM)
that is good who?

DanG (Oct 1, 2008 7:16:20 PM)
She started asking me a tons of questions. She was asking about my vent. She asked how often they came out to check things out. I told her that they have "never" been out. She got really upset about that.

Jim_VA (Oct 1, 2008 7:18:35 PM)
who was it

DanG (Oct 1, 2008 7:19:56 PM)
Cynthia Knoche

Jim_VA (Oct 1, 2008 7:20:31 PM)
ah

DanG (Oct 1, 2008 7:20:44 PM)
you know her

Jim_VA (Oct 1, 2008 7:22:13 PM)
no I know of her

DanG (Oct 1, 2008 7:23:58 PM)
at 6 this am her time, she was on the phone with the local ALSA office. I haven't heard anything though.

Jim_VA (Oct 1, 2008 7:26:22 PM)
time for a can of food be back in a few minutes

DanG (Oct 1, 2008 7:26:37 PM)
ko

Jim_VA (Oct 1, 2008 7:26:57 PM)
l9o

Jim_VA (Oct 1, 2008 7:27:12 PM)
lol

DanG (Oct 1, 2008 7:33:48 PM)
I need a gook kick in the keester - guess everybody does every now and then. Too much crap to get my head around.

Jim_VA (Oct 1, 2008 7:38:22 PM)
back

Jim_VA (Oct 1, 2008 7:42:09 PM)
I have some disagreement wIth ALSA's National Office

DanG (Oct 1, 2008 7:43:29 PM)
I'm not sure that I really understand what they do and what they are supposed to do.

Jim_VA (Oct 1, 2008 7:44:54 PM)
It is like a franchise

DanG (Oct 1, 2008 7:45:47 PM)
That part I know.

Jim_VA (Oct 1, 2008 7:47:02 PM)
the area chapters pay dues to the National

Jim_VA (Oct 1, 2008 7:49:04 PM)
research only gets 40%

Jim_VA (Oct 1, 2008 7:49:51 PM)
patient services 20 %

DanG (Oct 1, 2008 7:49:51 PM)
somebody is getting some high salary then..where the h... does the rest go?

DanG (Oct 1, 2008 7:50:48 PM)
you got to be kidding me...20% for patient services.

Jim_VA (Oct 1, 2008 7:51:08 PM)
pres gets $300k

DanG (Oct 1, 2008 7:53:07 PM)
I did have a certain % of my estate going to ALSA in my will.

Jim_VA (Oct 1, 2008 7:53:51 PM)
our chapter pres gets $115k

DanG (Oct 1, 2008 7:54:13 PM)
I've been trying to get them to help pay for a speech program that is $300.

Jim_VA (Oct 1, 2008 7:55:22 PM)
go to MDA

DanG (Oct 1, 2008 7:55:53 PM)
they sent me to ALSA

Jim_VA (Oct 1, 2008 7:57:25 PM)
lol the old pass the buck

Jim_VA (Oct 1, 2008 8:00:28 PM)
I think that we are salary bait

DanG (Oct 1, 2008 8:01:24 PM)
$115K not a bad gig!

Jim_VA (Oct 1, 2008 8:02:21 PM)
I would buy what ever I needed

Jim_VA (Oct 1, 2008 8:02:44 PM)
not for a cheritable organization

DanG (Oct 1, 2008 8:02:58 PM)
Ideally, yea!

Jim_VA (Oct 1, 2008 8:05:42 PM)
Augie's Quest 90% goes to research

DanG (Oct 1, 2008 8:06:55 PM)
That is very reasonable! What I would expect!

Jim_VA (Oct 1, 2008 8:07:18 PM)
yes

Jim_VA (Oct 1, 2008 8:10:27 PM)
I hate to dig into stuff but

Jim_VA (Oct 1, 2008 8:11:39 PM)
people should know where money is going

DanG (Oct 1, 2008 8:13:18 PM)
too many people including me ar knieve

DanG (Oct 1, 2008 8:13:27 PM)
naive

Jim_VA (Oct 1, 2008 8:14:20 PM)
we all are

DanG (Oct 1, 2008 8:18:50 PM)
what are MDA's #'s?

Jim_VA (Oct 1, 2008 8:19:35 PM)
about the same

Jim_VA (Oct 1, 2008 8:20:55 PM)
much bigger though

Jim_VA (Oct 1, 2008 8:22:02 PM)
over 2 times

DanG (Oct 1, 2008 8:24:23 PM)
I thought that 90% of MDA money went to research.

Jim_VA (Oct 1, 2008 8:27:03 PM)
no Augie's Quest is separate

DanG (Oct 1, 2008 8:31:15 PM)
i need to look into that

Jim_VA (Oct 1, 2008 8:31:45 PM)
yesf

Jim_VA (Oct 1, 2008 8:33:50 PM)
they are published on the website's

Jim_VA (Oct 1, 2008 8:36:19 PM)
salary information is from tax records

DanG (Oct 1, 2008 8:55:47 PM)
Jim, Think I should change respiratory companies?

Jim_VA (Oct 1, 2008 8:57:12 PM)
yes when you move

DanG (Oct 1, 2008 8:58:54 PM)
u get on im during day?

Jim_VA (Oct 1, 2008 8:59:51 PM)
Robert's is good here yes IM me

DanG (Oct 1, 2008 9:01:13 PM)
ty gn jim

Jim_VA (Oct 1, 2008 9:01:35 PM)
even if I am not on

Jim_VA (Oct 1, 2008 9:01:47 PM)
tc gn

Jim_VA (Oct 1, 2008 9:01:56 PM)
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DanG (Oct 1, 2008 9:02:33 PM)
(This user has left DigiChat)