Living with ALS

LadyP (Oct 21, 2009 6:06:53 PM)
(This user has left DigiChat)

LadyP (Oct 21, 2009 6:07:25 PM)
(This user has entered Living with ALS)

Jim_VA (Oct 21, 2009 6:13:58 PM)
(This user has entered Living with ALS)

LadyP (Oct 21, 2009 6:14:49 PM)
Hi, Jim. How's Florida?

Jim_VA (Oct 21, 2009 6:16:24 PM)
nice how are you tonight

LadyP (Oct 21, 2009 6:18:11 PM)
really good. I went out to dinner last night with people I used to work with. It was fun.

Jim_VA (Oct 21, 2009 6:22:29 PM)
that is really nice

LadyP (Oct 21, 2009 6:24:55 PM)
it wa a little strange because the last time they saw me I was still walking unassisted, and now I've got my walker

paper (Oct 21, 2009 6:26:11 PM)
(This user has entered Living with ALS)

LadyP (Oct 21, 2009 6:26:56 PM)
Hi, paper. I'm Peggy

paper (Oct 21, 2009 6:27:04 PM)
hi peggy

paper (Oct 21, 2009 6:27:17 PM)
hey jim

paper (Oct 21, 2009 6:27:25 PM)
how are you both

LadyP (Oct 21, 2009 6:28:01 PM)
I'm good. How about you?

paper (Oct 21, 2009 6:28:20 PM)
i am ok today

paper (Oct 21, 2009 6:29:05 PM)
i dont think i have seen u in here before peggy

Jim_VA (Oct 21, 2009 6:29:26 PM)
I go to hunt club meetings the guys really take care of me

paper (Oct 21, 2009 6:29:42 PM)
cool jim

LadyP (Oct 21, 2009 6:29:45 PM)
I just joined last week

paper (Oct 21, 2009 6:29:57 PM)
great welcome

paper (Oct 21, 2009 6:30:06 PM)
do you have als?

Jim_VA (Oct 21, 2009 6:30:10 PM)
hi paper

LadyP (Oct 21, 2009 6:30:11 PM)
thanks

paper (Oct 21, 2009 6:30:19 PM)
i have central core md

LadyP (Oct 21, 2009 6:30:45 PM)
i got ALS dx 5/09

paper (Oct 21, 2009 6:31:56 PM)
well it is nice to meet you can you tell us a bit about your self

LadyP (Oct 21, 2009 6:33:06 PM)
i'm 55. married, w/ son 25 and daughter 21

paper (Oct 21, 2009 6:33:20 PM)
where are you from

paper (Oct 21, 2009 6:33:24 PM)
i am in indiana

paper (Oct 21, 2009 6:33:30 PM)
i am 35

LadyP (Oct 21, 2009 6:33:41 PM)
near York, in PA

paper (Oct 21, 2009 6:34:00 PM)
f/m with 2 kids ages 14 and 13

LadyP (Oct 21, 2009 6:34:12 PM)
are you near indiannopolis?

paper (Oct 21, 2009 6:34:28 PM)
about 2 hrs south east of indy

paper (Oct 21, 2009 6:35:12 PM)
have you signed up to mymda online community yet?

LadyP (Oct 21, 2009 6:35:20 PM)
i was there 10/08 for a Girl Scout convention

paper (Oct 21, 2009 6:35:46 PM)
ya big city they are making new convention center

LadyP (Oct 21, 2009 6:35:48 PM)
yes to my mda

paper (Oct 21, 2009 6:36:05 PM)
it is a nice site i enjoy it a lot

paper (Oct 21, 2009 6:36:22 PM)
my screen name in there is papermom

LadyP (Oct 21, 2009 6:36:44 PM)
i joined patients like me, too

paper (Oct 21, 2009 6:36:53 PM)
cool

LadyP (Oct 21, 2009 6:37:16 PM)
are you two on that?

Jim_VA (Oct 21, 2009 6:37:35 PM)
good

paper (Oct 21, 2009 6:37:36 PM)
you will have to come to the other chats

paper (Oct 21, 2009 6:37:53 PM)
i am not on that

paper (Oct 21, 2009 6:38:31 PM)
ill be bk later i have to go get my bath now

LadyP (Oct 21, 2009 6:38:32 PM)
i am a slow typer using only one finger

paper (Oct 21, 2009 6:38:40 PM)
(This user has left DigiChat)

LadyP (Oct 21, 2009 6:39:21 PM)
Jim, do you take rilutek?

Jim_VA (Oct 21, 2009 6:40:39 PM)
yes since 2001

Jim_VA (Oct 21, 2009 6:44:35 PM)
we get it gmail

Jim_VA (Oct 21, 2009 6:45:47 PM)
by mail

Jim_VA (Oct 21, 2009 6:47:13 PM)
it is much cheaper

LadyP (Oct 21, 2009 6:47:25 PM)
sorry, i got a phone call

LadyP (Oct 21, 2009 6:49:02 PM)
I got papers from my ALS clinicand I'm going to get it free for 1 year

Jim_VA (Oct 21, 2009 6:49:27 PM)
no problem

LadyP (Oct 21, 2009 6:50:05 PM)
it's expensive, even with my husband's insurance

Jim_VA (Oct 21, 2009 6:50:15 PM)
great

LadyP (Oct 21, 2009 6:51:10 PM)
it's through NORD, whatever that stands for

Jim_VA (Oct 21, 2009 6:54:06 PM)
we were paying 200 a month

LadyP (Oct 21, 2009 6:54:42 PM)
we were paying $250

LadyP (Oct 21, 2009 6:55:22 PM)
can you get yours free?

Jim_VA (Oct 21, 2009 6:56:23 PM)
I think that it is 35 by mail

LadyP (Oct 21, 2009 6:56:47 PM)
Good deal!

Jim_VA (Oct 21, 2009 6:57:29 PM)
no free

LadyP (Oct 21, 2009 6:57:58 PM)
my husband just bought me a power lift chair. i really like it.

LadyP (Oct 21, 2009 6:58:18 PM)
early xmas gift

Jim_VA (Oct 21, 2009 6:59:24 PM)
super \

LadyP (Oct 21, 2009 7:00:41 PM)
yes. i sleep in it, too. i can't get in and out of a bed by myself

Jim_VA (Oct 21, 2009 7:02:40 PM)
there is some exciting research going on

LadyP (Oct 21, 2009 7:03:40 PM)
yes. it's almost too hard to keep up with it

Jim_VA (Oct 21, 2009 7:04:35 PM)
I know the feeling

Jim_VA (Oct 21, 2009 7:05:51 PM)
yes it is

LadyP (Oct 21, 2009 7:06:36 PM)
i really like that there will be a national registry for PALS. Might convince companies to get cure sooner

Jim_VA (Oct 21, 2009 7:10:12 PM)
i try to keep up

LadyP (Oct 21, 2009 7:11:16 PM)
have you participated in any drug studies?

Jim_VA (Oct 21, 2009 7:12:23 PM)
yes it may help

Jim_VA (Oct 21, 2009 7:13:55 PM)
only gene studies

LadyP (Oct 21, 2009 7:14:26 PM)
good. i was asked about one, but said no because i would need an injection, and my hands couldn't do it

LadyP (Oct 21, 2009 7:15:18 PM)
i think my son thinks he might get ALS

Jim_VA (Oct 21, 2009 7:17:41 PM)
they usually exclude ventilator patients from drug trials

LadyP (Oct 21, 2009 7:18:28 PM)
makes sense

Jim_VA (Oct 21, 2009 7:20:59 PM)
not much chance of that

LadyP (Oct 21, 2009 7:21:34 PM)
i hope not

Jim_VA (Oct 21, 2009 7:23:26 PM)
do you have a family history of als

LadyP (Oct 21, 2009 7:23:43 PM)
no

LadyP (Oct 21, 2009 7:24:14 PM)
just high blood pressure

paper (Oct 21, 2009 7:26:52 PM)
(This user has entered Living with ALS)

paper (Oct 21, 2009 7:27:44 PM)
ok did u miss me lol

paper (Oct 21, 2009 7:27:56 PM)
j/k

LadyP (Oct 21, 2009 7:28:00 PM)
LOL

Jim_VA (Oct 21, 2009 7:29:30 PM)
he should not worry about it

LadyP (Oct 21, 2009 7:29:53 PM)
thanks

Jim_VA (Oct 21, 2009 7:30:29 PM)
yes paper

paper (Oct 21, 2009 7:31:17 PM)
(This user has left DigiChat)

LadyP (Oct 21, 2009 7:34:25 PM)
any plans for the weekend?

Wes (Oct 21, 2009 7:35:24 PM)
(This user has entered Living with ALS)

LadyP (Oct 21, 2009 7:35:43 PM)
hi

Wes (Oct 21, 2009 7:35:54 PM)
(This user has moved to Myotonic Chat Group)

Jim_VA (Oct 21, 2009 7:36:34 PM)
worring about it will elevate his bp

LadyP (Oct 21, 2009 7:37:29 PM)
that's true. he has ashthma, too

Jim_VA (Oct 21, 2009 7:39:38 PM)
no big football weekend

Wes (Oct 21, 2009 7:40:15 PM)
(This user has entered Living with ALS)

Wes (Oct 21, 2009 7:40:25 PM)
(This user has moved to Myotonic Chat Group)

LadyP (Oct 21, 2009 7:40:30 PM)
do you have a favorite team?

Jim_VA (Oct 21, 2009 7:40:50 PM)
that is a bummer

Jim_VA (Oct 21, 2009 7:41:32 PM)
Tenn

LadyP (Oct 21, 2009 7:42:22 PM)
too bad they're not doing so well

Jim_VA (Oct 21, 2009 7:43:53 PM)
they are playing Alabama

LadyP (Oct 21, 2009 7:44:51 PM)
do you think they'll win?

Jim_VA (Oct 21, 2009 7:47:04 PM)
no but they make it to a bowl game

LadyP (Oct 21, 2009 7:47:58 PM)
good. my husband likes Penn State

Jim_VA (Oct 21, 2009 7:49:44 PM)
I do like Joepa

LadyP (Oct 21, 2009 7:50:36 PM)
it's amazing how long he's been around

LadyP (Oct 21, 2009 7:53:36 PM)
i need to go. time for some meds. have a good evening

Jim_VA (Oct 21, 2009 7:53:49 PM)
yes he is very special

LadyP (Oct 21, 2009 7:54:17 PM)
(This user has left DigiChat)

westjlittle (Oct 21, 2009 8:01:21 PM)
(This user has entered Living with ALS)

westjlittle (Oct 21, 2009 8:01:42 PM)
hi jim

Jim_VA (Oct 21, 2009 8:04:49 PM)
i

Jim_VA (Oct 21, 2009 8:05:39 PM)
Jim

Jim_VA (Oct 21, 2009 8:06:37 PM)
how are you

westjlittle (Oct 21, 2009 8:06:51 PM)
good

westjlittle (Oct 21, 2009 8:07:51 PM)
my bed got approved on appeal

Jim_VA (Oct 21, 2009 8:08:55 PM)
great

westjlittle (Oct 21, 2009 8:10:28 PM)
unbelievably, the insurance doc called and saidd he found loop hole

Jim_VA (Oct 21, 2009 8:11:07 PM)
have you got it

westjlittle (Oct 21, 2009 8:11:21 PM)
not yet

Jim_VA (Oct 21, 2009 8:12:46 PM)
good doc

westjlittle (Oct 21, 2009 8:12:48 PM)
waiting for status

Jim_VA (Oct 21, 2009 8:13:15 PM)
ah

westjlittle (Oct 21, 2009 8:15:35 PM)
anything new?

westjlittle (Oct 21, 2009 8:16:00 PM)
lecia has been better

westjlittle (Oct 21, 2009 8:16:24 PM)
we got night help

Jim_VA (Oct 21, 2009 8:17:28 PM)
i have decided against the health plan

Jim_VA (Oct 21, 2009 8:18:41 PM)
glad to hear that

westjlittle (Oct 21, 2009 8:18:42 PM)
for someone who already has plan i understand

Jim_VA (Oct 21, 2009 8:20:58 PM)
i don't think anyone does without

Jim_VA (Oct 21, 2009 8:23:16 PM)
my doctors work at free clinics

westjlittle (Oct 21, 2009 8:23:55 PM)
i know of at least three families w/o health ins. due to no job

westjlittle (Oct 21, 2009 8:25:26 PM)
one family currently has the flu

westjlittle (Oct 21, 2009 8:26:17 PM)
payimg bills on partv time job at babrus

pete46 (Oct 21, 2009 8:26:38 PM)
(This user has entered Living with ALS)

pete46 (Oct 21, 2009 8:26:54 PM)
hi jim and jim

westjlittle (Oct 21, 2009 8:27:23 PM)
hi pete

pete46 (Oct 21, 2009 8:27:49 PM)
i got my power chair today and fell already :)

pete46 (Oct 21, 2009 8:28:33 PM)
how have you been jim west? long time no chat

westjlittle (Oct 21, 2009 8:29:25 PM)
i'm fine but wife is having trouble

pete46 (Oct 21, 2009 8:29:39 PM)
nothing serious i hope

westjlittle (Oct 21, 2009 8:30:01 PM)
just stress

westjlittle (Oct 21, 2009 8:30:10 PM)
kids

pete46 (Oct 21, 2009 8:30:27 PM)
oh

Jim_VA (Oct 21, 2009 8:30:32 PM)
i believe that it is illegal to withold medical services

pete46 (Oct 21, 2009 8:31:21 PM)
i believe it is too

westjlittle (Oct 21, 2009 8:31:40 PM)
it's also illegal to not pay for them

pete46 (Oct 21, 2009 8:32:08 PM)
true

pete46 (Oct 21, 2009 8:32:45 PM)
I don't like the way the arm rests are set up on my permobil c300

paper (Oct 21, 2009 8:34:07 PM)
(This user has entered Living with ALS)

paper (Oct 21, 2009 8:34:13 PM)
(This user has moved to BMD Chat Group)

pete46 (Oct 21, 2009 8:34:42 PM)
jim, did you get your hospital bed? mattress?

westjlittle (Oct 21, 2009 8:35:06 PM)
i think its a question of what's right...

westjlittle (Oct 21, 2009 8:35:32 PM)
actually it was approved

pete46 (Oct 21, 2009 8:35:46 PM)
the mattress too

westjlittle (Oct 21, 2009 8:35:53 PM)
but waiting

Jim_VA (Oct 21, 2009 8:35:54 PM)
The independent analyst says health

westjlittle (Oct 21, 2009 8:37:10 PM)
bed and mattress

pete46 (Oct 21, 2009 8:37:22 PM)
great

westjlittle (Oct 21, 2009 8:37:29 PM)
as far as i know

pete46 (Oct 21, 2009 8:38:31 PM)
i was able to get my work insurance to pay for the power chair which saved me the 20% copay medicare charges. $4400! which was nice

westjlittle (Oct 21, 2009 8:38:49 PM)
great

pete46 (Oct 21, 2009 8:39:16 PM)
i could really use a new mattress. I have a hospital bed but the mattress kills my hips when i sleep on my sides.

Jim_VA (Oct 21, 2009 8:39:19 PM)
insurance will cost 1700 a month by 2015

pete46 (Oct 21, 2009 8:39:38 PM)
what insurance?

Jim_VA (Oct 21, 2009 8:40:03 PM)
health

westjlittle (Oct 21, 2009 8:40:35 PM)
we were discussing govt plan

pete46 (Oct 21, 2009 8:40:42 PM)
oh

pete46 (Oct 21, 2009 8:41:31 PM)
very confusing

pete46 (Oct 21, 2009 8:41:54 PM)
what was the name of the mattress you were getting?

westjlittle (Oct 21, 2009 8:42:00 PM)
i already pay $1100 as my share

pete46 (Oct 21, 2009 8:42:34 PM)
out of pocket?

westjlittle (Oct 21, 2009 8:42:48 PM)
company pays at least that much

westjlittle (Oct 21, 2009 8:42:58 PM)
paycheck

pete46 (Oct 21, 2009 8:43:05 PM)
family plan

westjlittle (Oct 21, 2009 8:43:10 PM)
full plan

westjlittle (Oct 21, 2009 8:43:15 PM)
yes

pete46 (Oct 21, 2009 8:44:30 PM)
i have individual plan total monthly cost for the health coverage is only $400 a month. Maybe thats why you get the bed and mattress :)

westjlittle (Oct 21, 2009 8:45:06 PM)
i asked for the bed jimva has

westjlittle (Oct 21, 2009 8:45:16 PM)
hillrom

Jim_VA (Oct 21, 2009 8:45:55 PM)
would you believe that that doctors write off bad bills

pete46 (Oct 21, 2009 8:53:21 PM)
i would believe it

pete46 (Oct 21, 2009 8:54:01 PM)
is it the hillrom new pressure relief mattress?

westjlittle (Oct 21, 2009 8:54:11 PM)
yes

westjlittle (Oct 21, 2009 8:54:30 PM)
i think

pete46 (Oct 21, 2009 8:54:43 PM)
will it make turning from side to side more difficult do you know?

westjlittle (Oct 21, 2009 8:55:28 PM)
should be easy

Jim_VA (Oct 21, 2009 8:55:42 PM)
so the question becomes is health care available or do we want to send premiums through the roof so everyone has aa :

Jim_VA (Oct 21, 2009 8:56:51 PM)
"policy"

Jim_VA (Oct 21, 2009 8:58:06 PM)
think of your children

westjlittle (Oct 21, 2009 8:59:20 PM)
ii am. what policy is going to cover them when i stop work?

westjlittle (Oct 21, 2009 8:59:29 PM)
none

westjlittle (Oct 21, 2009 9:00:09 PM)
wife will have to get job

westjlittle (Oct 21, 2009 9:01:13 PM)
cobra plan from work is outragous

pete46 (Oct 21, 2009 9:01:26 PM)
very expensive?

westjlittle (Oct 21, 2009 9:01:39 PM)
yes

westjlittle (Oct 21, 2009 9:02:42 PM)
i plan to pay it from my ira

pete46 (Oct 21, 2009 9:03:01 PM)
i am fortunate in that i am on long term disability and am still considered an employee so even if i don't work at all I will still receive the coverage and pay only 10% of the cost. I think until i turn 70

pete46 (Oct 21, 2009 9:03:29 PM)
or at least 65

westjlittle (Oct 21, 2009 9:03:45 PM)
i will have LTD but no ins.

pete46 (Oct 21, 2009 9:05:19 PM)
that't what I thought would happen to me but they kept me on.

westjlittle (Oct 21, 2009 9:05:30 PM)
i will have medicare

Jim_VA (Oct 21, 2009 9:05:30 PM)
think about them working to pay for health insurance

pete46 (Oct 21, 2009 9:05:52 PM)
i have medicare now also as my secondary carrier.

pete46 (Oct 21, 2009 9:06:05 PM)
not sure if i really need it though

pete46 (Oct 21, 2009 9:06:54 PM)
i think it cost $96 a month taken out of my social securith disability insurance

pete46 (Oct 21, 2009 9:07:11 PM)
will the kids be covered by medicare when you stop working?

westjlittle (Oct 21, 2009 9:07:19 PM)
no

pete46 (Oct 21, 2009 9:07:35 PM)
can you get medicaid?

westjlittle (Oct 21, 2009 9:08:04 PM)
no, i was a big saver

westjlittle (Oct 21, 2009 9:08:49 PM)
i would have to spend quite a bit

pete46 (Oct 21, 2009 9:09:03 PM)
in mass you can get what is called commonhealth which is the same coverage as medicaid but you pay a premium and need ot meet a deductible

pete46 (Oct 21, 2009 9:09:20 PM)
a one time deductible

westjlittle (Oct 21, 2009 9:11:16 PM)
in co you basiclly must have only 2k, spouse 100k, 1 house, 1 car

westjlittle (Oct 21, 2009 9:12:11 PM)
income limit ?? cant remember

pete46 (Oct 21, 2009 9:15:33 PM)
pretty much the same in mass for medicaid which is called MassHealth standard

Jim_VA (Oct 21, 2009 9:16:04 PM)
\that would be something to lobby for medicare coverage for the children of als victims until

pete46 (Oct 21, 2009 9:17:37 PM)
it would make sense

westjlittle (Oct 21, 2009 9:18:14 PM)
why not juust cover everyone with medicare

westjlittle (Oct 21, 2009 9:20:30 PM)
most industrialized countries mak it work

westjlittle (Oct 21, 2009 9:21:40 PM)
our system is rife with problems

Jim_VA (Oct 21, 2009 9:22:11 PM)
you can't accept anything tonight