Living with ALS 2
pete46 (Mar 8, 2010 7:59:36 PM)
Jim_VA (Mar 8, 2010 8:06:57 PM)
(This user has entered Living with ALS 2)
pete46 (Mar 8, 2010 8:07:07 PM)
hi jim
westjlittle (Mar 8, 2010 8:07:50 PM)
(This user has entered Living with ALS 2)
pete46 (Mar 8, 2010 8:08:03 PM)
hi jim
westjlittle (Mar 8, 2010 8:08:27 PM)
hi guys
pete46 (Mar 8, 2010 8:08:42 PM)
how are you doing?
westjlittle (Mar 8, 2010 8:10:01 PM)
still here but had real poo today! 47 days
Jim_VA (Mar 8, 2010 8:10:25 PM)
hi jim and pete
pete46 (Mar 8, 2010 8:10:40 PM)
well the real poo is encouraging :)
pete46 (Mar 8, 2010 8:11:04 PM)
and ins is covering the nurse team again?
westjlittle (Mar 8, 2010 8:11:31 PM)
yes
westjlittle (Mar 8, 2010 8:11:42 PM)
My wife basically said she can not handle my care and we must have professionals
pete46 (Mar 8, 2010 8:12:24 PM)
professionals to help your wife
westjlittle (Mar 8, 2010 8:13:58 PM)
to care for me,
pete46 (Mar 8, 2010 8:15:25 PM)
still working
westjlittle (Mar 8, 2010 8:15:49 PM)
I said it is cheaper to hire nanny but she is scared to death
pete46 (Mar 8, 2010 8:16:07 PM)
wife?
westjlittle (Mar 8, 2010 8:16:15 PM)
yes
pete46 (Mar 8, 2010 8:17:02 PM)
i can imagine alhough once she gets the hang of things, i am sure she will be fine
pete46 (Mar 8, 2010 8:18:34 PM)
did you put together the care team?
westjlittle (Mar 8, 2010 8:18:42 PM)
She is not willing to try at this point
pete46 (Mar 8, 2010 8:18:55 PM)
thats understandable
pete46 (Mar 8, 2010 8:19:11 PM)
has she received training?
Jim_VA (Mar 8, 2010 8:19:28 PM)
train your dad and mom
westjlittle (Mar 8, 2010 8:20:36 PM)
I can afford it for a little while but not for long enough
pete46 (Mar 8, 2010 8:20:57 PM)
very expensive, i thought ins was paying?
westjlittle (Mar 8, 2010 8:21:13 PM)
they are on board
pete46 (Mar 8, 2010 8:22:42 PM)
thats good
westjlittle (Mar 8, 2010 8:23:16 PM)
inswont pay for everMy read of plan features suggests only 60 days peryear
pete46 (Mar 8, 2010 8:23:51 PM)
thats not very good
Jim_VA (Mar 8, 2010 8:24:45 PM)
there will be times that your help won't show
westjlittle (Mar 8, 2010 8:25:04 PM)
If I can't work and go on medicare there is no benefit from the government
pete46 (Mar 8, 2010 8:25:33 PM)
so what options do you have?
CRIS (Mar 8, 2010 8:25:51 PM)
(This user has entered Living with ALS 2)
pete46 (Mar 8, 2010 8:25:59 PM)
hi cris
CRIS (Mar 8, 2010 8:26:09 PM)
hi all...I finally made it...lol
pete46 (Mar 8, 2010 8:26:28 PM)
lol
CRIS (Mar 8, 2010 8:26:50 PM)
how is everyone tonight?
pete46 (Mar 8, 2010 8:26:59 PM)
i;m good thanks
Jim_VA (Mar 8, 2010 8:26:59 PM)
hi cris]
westjlittle (Mar 8, 2010 8:27:27 PM)
private Private pay until qualify for medicaid
pete46 (Mar 8, 2010 8:27:59 PM)
will medicaid pay if you have it?
Jim_VA (Mar 8, 2010 8:28:16 PM)
good ty how are you
westjlittle (Mar 8, 2010 8:28:25 PM)
yes
pete46 (Mar 8, 2010 8:28:45 PM)
ut you have to be broke to get it?
westjlittle (Mar 8, 2010 8:28:56 PM)
yes
pete46 (Mar 8, 2010 8:28:57 PM)
or close to it
pete46 (Mar 8, 2010 8:29:26 PM)
and income has to be real low?
westjlittle (Mar 8, 2010 8:29:36 PM)
yes
CRIS (Mar 8, 2010 8:29:48 PM)
I am OK
pete46 (Mar 8, 2010 8:30:26 PM)
i am trying to get it now, different for nursing home eligibility
pete46 (Mar 8, 2010 8:31:25 PM)
not sure about colorado but mass allows you to put assets in a pooled trust and is not counted for medicaid eligibility
Jim_VA (Mar 8, 2010 8:31:46 PM)
good cris
pete46 (Mar 8, 2010 8:32:14 PM)
you can use it as you wish as long as its spent on you. if anything left when you die, medicaid gets it
CRIS (Mar 8, 2010 8:32:43 PM)
not here in California....a single person can only have $2000 in assets
pete46 (Mar 8, 2010 8:34:24 PM)
in mass a single person can only have $2000 in assets too, but can have unlimited assets in the pooled trust that doesnt count
pete46 (Mar 8, 2010 8:35:12 PM)
brb
westjlittle (Mar 8, 2010 8:36:45 PM)
Colorado allows person to have only 2000 plus a per month income a home a car spouse can have 100 k
Jim_VA (Mar 8, 2010 8:37:58 PM)
jim i am sure we can train your mom
pete46 (Mar 8, 2010 8:38:26 PM)
back
CRIS (Mar 8, 2010 8:38:43 PM)
when are you going home, jim w?
Jim_VA (Mar 8, 2010 8:39:13 PM)
wb
pete46 (Mar 8, 2010 8:39:39 PM)
ty
westjlittle (Mar 8, 2010 8:40:19 PM)
i dont know
CRIS (Mar 8, 2010 8:40:39 PM)
ok....brb...gonna make me a sandwich
westjlittle (Mar 8, 2010 8:42:18 PM)
jim do you have paid help?
Jim_VA (Mar 8, 2010 8:43:30 PM)
we don't do everything by the book
pete46 (Mar 8, 2010 8:44:13 PM)
i have a health care aide that comes in 3 times a week and a pt that sees me once a week ins pays
westjlittle (Mar 8, 2010 8:44:21 PM)
that was Y/N question
pete46 (Mar 8, 2010 8:44:36 PM)
y
Jim_VA (Mar 8, 2010 8:45:04 PM)
yes now 3 days a week
westjlittle (Mar 8, 2010 8:45:40 PM)
what skill level?
westjlittle (Mar 8, 2010 8:46:11 PM)
nurse, CNA, other
Jim_VA (Mar 8, 2010 8:47:18 PM)
none for 3 or 4 years
Jim_VA (Mar 8, 2010 8:48:07 PM)
retired rn
westjlittle (Mar 8, 2010 8:49:24 PM)
Can you email me what they do and how you pay them
Jim_VA (Mar 8, 2010 8:53:10 PM)
she worked in the or heart in orlando no problem
westjlittle (Mar 8, 2010 8:53:26 PM)
I am alI for hiring our own people -- there would be difficulties but it would be cheaper in the long run
westjlittle (Mar 8, 2010 8:55:17 PM)
I am sure the CNAs around here would do some extra work on the side
Jim_VA (Mar 8, 2010 8:57:01 PM)
when she came here we had to train her
westjlittle (Mar 8, 2010 8:58:43 PM)
sure
Jim_VA (Mar 8, 2010 9:00:28 PM)
she said i can dial 911'
westjlittle (Mar 8, 2010 9:00:32 PM)
my dad just came signing off'
westjlittle (Mar 8, 2010 9:01:06 PM)
(This user has left DigiChat)
CRIS (Mar 8, 2010 9:02:29 PM)
back
pete46 (Mar 8, 2010 9:03:13 PM)
wb cris
pete46 (Mar 8, 2010 9:03:32 PM)
jim w just signed off, his dad came for visit
CRIS (Mar 8, 2010 9:03:53 PM)
ty...oh, that is nice that he got a visitor
pete46 (Mar 8, 2010 9:04:02 PM)
yes
AmberB (Mar 8, 2010 9:04:44 PM)
(This user has entered Living with ALS 2)
riley04 (Mar 8, 2010 9:04:52 PM)
(This user has entered Living with ALS 2)
pete46 (Mar 8, 2010 9:05:00 PM)
hi amber
pete46 (Mar 8, 2010 9:05:04 PM)
hi riley
AmberB (Mar 8, 2010 9:05:07 PM)
hi
pete46 (Mar 8, 2010 9:05:15 PM)
how are you?
CRIS (Mar 8, 2010 9:05:24 PM)
hi amber
riley04 (Mar 8, 2010 9:05:31 PM)
hi sorry i missed the mito chat
pete46 (Mar 8, 2010 9:05:59 PM)
well this is the als chat, youre welcome to join us
riley04 (Mar 8, 2010 9:06:05 PM)
(This user has left DigiChat)
AmberB (Mar 8, 2010 9:06:13 PM)
(This user has moved to Mitochondrial Chat)
pete46 (Mar 8, 2010 9:06:34 PM)
oh well
AmberB (Mar 8, 2010 9:06:43 PM)
(This user has entered Living with ALS 2)
pete46 (Mar 8, 2010 9:06:55 PM)
wb amber
AmberB (Mar 8, 2010 9:07:15 PM)
new to the mda site and chat. still figuring it out]
CRIS (Mar 8, 2010 9:07:32 PM)
how are you tonight, amber?
pete46 (Mar 8, 2010 9:07:32 PM)
how is the weather in california cris
AmberB (Mar 8, 2010 9:07:32 PM)
still getting used to mda site and chat
CRIS (Mar 8, 2010 9:07:56 PM)
it seems to be lagging
AmberB (Mar 8, 2010 9:08:04 PM)
good. i noticed that too
AmberB (Mar 8, 2010 9:08:22 PM)
how are you guys?
CRIS (Mar 8, 2010 9:08:23 PM)
where are you from, amber....california here
AmberB (Mar 8, 2010 9:08:30 PM)
idaho
pete46 (Mar 8, 2010 9:08:42 PM)
im good and from massachusetts
Jim_VA (Mar 8, 2010 9:08:46 PM)
the only one we didn't have to train is Emma]
CRIS (Mar 8, 2010 9:09:03 PM)
what form of MD do you have, amber?
AmberB (Mar 8, 2010 9:09:17 PM)
my mom has MG, and my kids have mito
AmberB (Mar 8, 2010 9:09:36 PM)
among other things.
pete46 (Mar 8, 2010 9:09:44 PM)
sorry to hear that
pete46 (Mar 8, 2010 9:09:51 PM)
what is MG?
AmberB (Mar 8, 2010 9:09:56 PM)
myasthenia gravis
pete46 (Mar 8, 2010 9:10:04 PM)
ok
pete46 (Mar 8, 2010 9:10:21 PM)
how many kids do you have?
CRIS (Mar 8, 2010 9:10:26 PM)
how old are your kids?
AmberB (Mar 8, 2010 9:10:38 PM)
4. girls age 7,6,6,5
pete46 (Mar 8, 2010 9:10:56 PM)
wow thats a handful
CRIS (Mar 8, 2010 9:11:27 PM)
they must keep you very busy
AmberB (Mar 8, 2010 9:12:21 PM)
yep. oldest has arthrogryposis and amyoplasia and more. one of the twins is armless, one has a right brain disorder, so I am very busy
AmberB (Mar 8, 2010 9:12:29 PM)
you guys have kids?
pete46 (Mar 8, 2010 9:13:07 PM)
i have 5 and 9 grandkids, 1 great grandkid
CRIS (Mar 8, 2010 9:13:41 PM)
no children here
AmberB (Mar 8, 2010 9:13:48 PM)
cool. i should go help get them to bed. ttyl
AmberB (Mar 8, 2010 9:14:05 PM)
(This user has left DigiChat)
pete46 (Mar 8, 2010 9:14:18 PM)
she has her hands full
CRIS (Mar 8, 2010 9:14:25 PM)
understatement
pete46 (Mar 8, 2010 9:14:40 PM)
i'm really not familiar with the disorders she mentioned
pete46 (Mar 8, 2010 9:14:56 PM)
i think paper has mitochondria
CRIS (Mar 8, 2010 9:15:27 PM)
me neither...I wonder if paper knows her?
pete46 (Mar 8, 2010 9:16:13 PM)
paper left a message on yahoo im asking for visitors to the mitochondria chat room
CRIS (Mar 8, 2010 9:16:56 PM)
there is no one there
pete46 (Mar 8, 2010 9:17:49 PM)
i left messages for new members of plm, with the link to this chat room hoping to get more visitors but nothing yet
CRIS (Mar 8, 2010 9:18:39 PM)
I wonder why....maybe they feel safe at the plm website
CRIS (Mar 8, 2010 9:19:48 PM)
can you chat there?
pete46 (Mar 8, 2010 9:20:19 PM)
this site is harder to access, there is another als site called jeannies chat room, much easier to get onto
pete46 (Mar 8, 2010 9:20:44 PM)
and usually a good crowd there weekdays afternoons.
pete46 (Mar 8, 2010 9:21:08 PM)
no you cant chat in plm, but forum discussions
CRIS (Mar 8, 2010 9:21:16 PM)
I know...you got to get a password here and it is kind of complicated
CRIS (Mar 8, 2010 9:21:34 PM)
what time is jeannies chat room?
pete46 (Mar 8, 2010 9:21:55 PM)
and you have to submit your username and wait until the next day for an email confirmation
pete46 (Mar 8, 2010 9:22:09 PM)
jeannies is open 24/7
CRIS (Mar 8, 2010 9:22:15 PM)
I know
pete46 (Mar 8, 2010 9:22:35 PM)
and you need up to date java here
pete46 (Mar 8, 2010 9:23:13 PM)
at jeannies just go there, type in a username and hit the login button
CRIS (Mar 8, 2010 9:23:30 PM)
is it just for ALS patients?
pete46 (Mar 8, 2010 9:23:44 PM)
and caregivers from what i can see
CRIS (Mar 8, 2010 9:24:18 PM)
do you go often?
pete46 (Mar 8, 2010 9:24:22 PM)
a fellow named kurt is there every afternoon during the week
pete46 (Mar 8, 2010 9:24:35 PM)
i go there quite a bit
pete46 (Mar 8, 2010 9:25:19 PM)
if at my computer in the afternoon i can chat there and do something else on other monitor
CRIS (Mar 8, 2010 9:26:09 PM)
how are your Mafia Wars coming along on Facebook?
pete46 (Mar 8, 2010 9:26:17 PM)
from what they tell me they used to get a real big crowd there, 12 to 15 people at a time
pete46 (Mar 8, 2010 9:26:50 PM)
ok, just a way to pass the time, i still dont really understand it
CRIS (Mar 8, 2010 9:26:51 PM)
how many now?
pete46 (Mar 8, 2010 9:27:00 PM)
how many what
pete46 (Mar 8, 2010 9:27:08 PM)
chatters?
CRIS (Mar 8, 2010 9:27:11 PM)
how many people go to the chat room
CRIS (Mar 8, 2010 9:27:27 PM)
now
pete46 (Mar 8, 2010 9:27:35 PM)
quite a few of course not everyone goes every day
CRIS (Mar 8, 2010 9:27:55 PM)
next time you go, let me know....ok?
pete46 (Mar 8, 2010 9:28:14 PM)
but there is usually 4 to 8 people on it weekdays afternoon
pete46 (Mar 8, 2010 9:29:12 PM)
quite a few from outside usa on it, it was started by a gal from england
CRIS (Mar 8, 2010 9:30:06 PM)
thats good
pete46 (Mar 8, 2010 9:30:39 PM)
people from spain, germany, new zealand, a lot from england and of course lots from different parts of usa
CRIS (Mar 8, 2010 9:31:43 PM)
do you ever ask them why they don't come over here to our website?
pete46 (Mar 8, 2010 9:32:24 PM)
kurt, the fellow thats there everyday, has no movement, can only talk and move his eyes. he has a caregiver that types for him
CRIS (Mar 8, 2010 9:32:44 PM)
where is he from?
pete46 (Mar 8, 2010 9:32:54 PM)
wisconsin
pete46 (Mar 8, 2010 9:33:00 PM)
milwakee
pete46 (Mar 8, 2010 9:33:07 PM)
milwaukee
pete46 (Mar 8, 2010 9:33:39 PM)
he hasnt been out of his house in 5 years
pete46 (Mar 8, 2010 9:33:49 PM)
he has hospice come
pete46 (Mar 8, 2010 9:34:09 PM)
and is on bipap 24/7
CRIS (Mar 8, 2010 9:34:33 PM)
that is like our friend, Glen...he hasn't been out of bed for 12 years....his parents and nurses take care of him
pete46 (Mar 8, 2010 9:34:57 PM)
can he still talk, eat, breathe?
Jim_VA (Mar 8, 2010 9:35:04 PM)
does Clare still attend
pete46 (Mar 8, 2010 9:35:29 PM)
once in a while he is there, he is on facebook quite a bit
CRIS (Mar 8, 2010 9:36:15 PM)
Glen cannot talk, eats thru tubes and on vent, but has the best attitude about things
pete46 (Mar 8, 2010 9:36:30 PM)
does he have als?
CRIS (Mar 8, 2010 9:37:29 PM)
no, I believe he has Beckers and maybe something else....he was bedridden when he got pneumonia about 12 years ago....was in wheelchair since young
pete46 (Mar 8, 2010 9:37:44 PM)
how old is he?
CRIS (Mar 8, 2010 9:38:02 PM)
maybe 44
pete46 (Mar 8, 2010 9:39:03 PM)
we used to get more at this site but has really slowed down the past few months
CRIS (Mar 8, 2010 9:39:11 PM)
I got him started on yahoo messenger, now I hardly see him....he has gathered a bunch of friends and says hello to me every once in a while
pete46 (Mar 8, 2010 9:39:31 PM)
is he able to type?
CRIS (Mar 8, 2010 9:39:52 PM)
I think so, but I may be wrong
pete46 (Mar 8, 2010 9:40:17 PM)
is that what cary has?
CRIS (Mar 8, 2010 9:40:50 PM)
not sure
pete46 (Mar 8, 2010 9:45:17 PM)
i'm not sure either i know ive talked to someone with beckers
Jim_VA (Mar 8, 2010 9:46:29 PM)
how about libby
CRIS (Mar 8, 2010 9:46:38 PM)
there use to be someone who came to chat named Budmello, but he does not come any more
pete46 (Mar 8, 2010 9:47:25 PM)
no libby isnt there, shes on plm forum quite a bit though
CRIS (Mar 8, 2010 9:56:17 PM)
well friends, it was nice chatting with you....hope to see you soon....good nite
pete46 (Mar 8, 2010 9:56:34 PM)
good nite cris
pete46 (Mar 8, 2010 9:56:50 PM)
i am signing off too as its that time
pete46 (Mar 8, 2010 9:57:03 PM)
bye jim, chat again on wednesday
CRIS (Mar 8, 2010 9:57:09 PM)
ok...good nite all
CRIS (Mar 8, 2010 9:57:14 PM)
(This user has left DigiChat)
pete46 (Mar 8, 2010 9:57:16 PM)
(This user has left DigiChat)
Jim_VA (Mar 8, 2010 9:58:16 PM)
(This user has left DigiChat)