Living with ALS
westjlittle (Mar 14, 2010 2:15:27 PM)
Jim_VA (Mar 14, 2010 2:17:56 PM)
(This user has entered Living with ALS)
westjlittle (Mar 14, 2010 2:18:20 PM)
hijim
Jim_VA (Mar 14, 2010 2:19:22 PM)
hi JIM
Jim_VA (Mar 14, 2010 2:20:31 PM)
how is it going}
westjlittle (Mar 14, 2010 2:20:58 PM)
The fundraiser was last night they had 600 attendees
Jim_VA (Mar 14, 2010 2:21:44 PM)
wow
westjlittle (Mar 14, 2010 2:22:11 PM)
Don't know the total yet but should be by tomorrow
westjlittle (Mar 14, 2010 2:23:33 PM)
It is snowing here
Jim_VA (Mar 14, 2010 2:24:55 PM)
ouch
westjlittle (Mar 14, 2010 2:25:33 PM)
I should have ridden you more for a donation
Jim_VA (Mar 14, 2010 2:26:01 PM)
nice here
Jim_VA (Mar 14, 2010 2:27:15 PM)
yes no answer]
westjlittle (Mar 14, 2010 2:28:14 PM)
The plan is still to go home this week
Jim_VA (Mar 14, 2010 2:29:13 PM)
i could not use the paper
Jim_VA (Mar 14, 2010 2:29:53 PM)
oh my
pete46 (Mar 14, 2010 2:30:24 PM)
(This user has entered Living with ALS)
pete46 (Mar 14, 2010 2:30:46 PM)
hi jim and jim
westjlittle (Mar 14, 2010 2:31:07 PM)
My son Logan is having a hard time with my absence he doesn't understand why mom isn't taking care of me
westjlittle (Mar 14, 2010 2:31:32 PM)
hi pete
pete46 (Mar 14, 2010 2:32:02 PM)
how ya doing jim, i have a grandson logan that i live with
pete46 (Mar 14, 2010 2:32:19 PM)
how old is your son logan
westjlittle (Mar 14, 2010 2:32:34 PM)
8
Jim_VA (Mar 14, 2010 2:32:40 PM)
did you understand what i sent you
Jim_VA (Mar 14, 2010 2:33:09 PM)
hi pete
westjlittle (Mar 14, 2010 2:34:01 PM)
not sure
pete46 (Mar 14, 2010 2:34:16 PM)
any date yet when you are going home jim?
westjlittle (Mar 14, 2010 2:34:48 PM)
this wee
pete46 (Mar 14, 2010 2:34:58 PM)
fantastic
westjlittle (Mar 14, 2010 2:34:58 PM)
week
Jim_VA (Mar 14, 2010 2:36:17 PM)
do you have a cufflator
westjlittle (Mar 14, 2010 2:37:17 PM)
When do you move to the home
pete46 (Mar 14, 2010 2:38:00 PM)
not til i get masshealth approval. i dont think it will be for a few weeks
westjlittle (Mar 14, 2010 2:39:23 PM)
no cuffalator
pete46 (Mar 14, 2010 2:40:00 PM)
whats a cuffalator?
westjlittle (Mar 14, 2010 2:40:35 PM)
http://www.posey.com/files/M1410.pdf
pete46 (Mar 14, 2010 2:40:54 PM)
ty
Jim_VA (Mar 14, 2010 2:41:49 PM)
try to get one
westjlittle (Mar 14, 2010 2:42:10 PM)
i didnt know eithwr
pete46 (Mar 14, 2010 2:43:57 PM)
says against law to use it at home!
Jim_VA (Mar 14, 2010 2:44:24 PM)
handy item
pete46 (Mar 14, 2010 2:44:26 PM)
says can only be used in licensed healthcare facility
pete46 (Mar 14, 2010 2:46:28 PM)
unless there are different types. the one in the link has a warning saying against law
Jim_VA (Mar 14, 2010 2:47:02 PM)
i have been using one for years
pete46 (Mar 14, 2010 2:47:46 PM)
what does it measure jim?
Jim_VA (Mar 14, 2010 2:48:21 PM)
like my]
westjlittle (Mar 14, 2010 2:49:11 PM)
Pressure in the cuff in trach
pete46 (Mar 14, 2010 2:49:47 PM)
i thought that was set
Jim_VA (Mar 14, 2010 2:50:10 PM)
;pressure in the
westjlittle (Mar 14, 2010 2:50:55 PM)
it is adjustabe
pete46 (Mar 14, 2010 2:53:07 PM)
oh i see
Jim_VA (Mar 14, 2010 2:53:29 PM)
it will inflate or deflate
Jim_VA (Mar 14, 2010 2:53:36 PM)
\
westjlittle (Mar 14, 2010 2:55:23 PM)
Supposed to get shower today
pete46 (Mar 14, 2010 2:55:36 PM)
how long has it been
westjlittle (Mar 14, 2010 2:55:55 PM)
Week
pete46 (Mar 14, 2010 2:56:32 PM)
makes you appreciate them when you have to wait :)
westjlittle (Mar 14, 2010 2:56:50 PM)
They give beed baths in between
pete46 (Mar 14, 2010 2:57:13 PM)
not the same
westjlittle (Mar 14, 2010 2:57:37 PM)
yes
Jim_VA (Mar 14, 2010 2:58:01 PM)
i adjusted my vent tlo my comfort
Jim_VA (Mar 14, 2010 3:00:38 PM)
the rt went nuts]
Jim_VA (Mar 14, 2010 3:02:02 PM)
i will have to report this
pete46 (Mar 14, 2010 3:02:16 PM)
did she?
Jim_VA (Mar 14, 2010 3:03:15 PM)
report it
Jim_VA (Mar 14, 2010 3:03:32 PM)
yes
pete46 (Mar 14, 2010 3:03:38 PM)
haha
westjlittle (Mar 14, 2010 3:03:59 PM)
My adventure yesterday was a nurse turned on the heater to 85 I was roasting alive the nurse is from India and didn't seem to notice It took three hours to cool down
pete46 (Mar 14, 2010 3:04:26 PM)
wow
westjlittle (Mar 14, 2010 3:05:30 PM)
I usually set it to 68
Jim_VA (Mar 14, 2010 3:05:42 PM)
ouch
westjlittle (Mar 14, 2010 3:07:33 PM)
Of course this happened at 4 AM somy sleep was screwed
Jim_VA (Mar 14, 2010 3:08:22 PM)
that is what i like]
pete46 (Mar 14, 2010 3:08:38 PM)
why did she turn it up? did she think you were cold
Jim_VA (Mar 14, 2010 3:08:46 PM)
lol
westjlittle (Mar 14, 2010 3:11:07 PM)
The thermostat is a slider by the light switch I think that it was a mistake
pete46 (Mar 14, 2010 3:11:19 PM)
oh
pete46 (Mar 14, 2010 3:11:32 PM)
a little more incompitence
westjlittle (Mar 14, 2010 3:11:51 PM)
yes
westjlittle (Mar 14, 2010 3:15:13 PM)
The fundraiser was last night we had 600 people don't know the total raised yet
westjlittle (Mar 14, 2010 3:18:20 PM)
I expect you guys to get something together for next year
pete46 (Mar 14, 2010 3:19:32 PM)
will try
pete46 (Mar 14, 2010 3:20:23 PM)
celtics playing cleveland today
westjlittle (Mar 14, 2010 3:20:38 PM)
Pete, your goal is a boston get away weekend
pete46 (Mar 14, 2010 3:21:42 PM)
maybe a celtics game
westjlittle (Mar 14, 2010 3:22:29 PM)
jim, your goal is a disney get away weekend
westjlittle (Mar 14, 2010 3:22:43 PM)
sure
westjlittle (Mar 14, 2010 3:23:30 PM)
hotels are easy to recruit
westjlittle (Mar 14, 2010 3:24:10 PM)
restaurant gift cert
westjlittle (Mar 14, 2010 3:24:45 PM)
tourist board
pete46 (Mar 14, 2010 3:25:02 PM)
whats that
westjlittle (Mar 14, 2010 3:26:14 PM)
http://www.bostonusa.com/
pete46 (Mar 14, 2010 3:27:35 PM)
brb
Jim_VA (Mar 14, 2010 3:33:24 PM)
i want some blank aq paper
westjlittle (Mar 14, 2010 3:34:37 PM)
How much do you pay your help
westjlittle (Mar 14, 2010 3:36:33 PM)
Pay taxes too ?
Jim_VA (Mar 14, 2010 3:36:34 PM)
i like to tell my story
Jim_VA (Mar 14, 2010 3:39:14 PM)
it is on that note
Jim_VA (Mar 14, 2010 3:39:51 PM)
x
westjlittle (Mar 14, 2010 3:41:14 PM)
I must have missed that note when did you send it
westjlittle (Mar 14, 2010 3:41:42 PM)
resend
Jim_VA (Mar 14, 2010 3:45:03 PM)
the nurse here is super does laundry,cooks
Jim_VA (Mar 14, 2010 3:46:25 PM)
she can't be idle]
pete46 (Mar 14, 2010 3:47:36 PM)
back
westjlittle (Mar 14, 2010 3:47:48 PM)
how much? spill it
westjlittle (Mar 14, 2010 3:48:31 PM)
10,15, 30 per r?
Jim_VA (Mar 14, 2010 3:50:24 PM)
no problem when pete gets back i will resend
pete46 (Mar 14, 2010 3:50:35 PM)
im back jim
Jim_VA (Mar 14, 2010 3:51:01 PM)
wb
pete46 (Mar 14, 2010 3:51:21 PM)
ty
Jim_VA (Mar 14, 2010 3:51:51 PM)
brb
pete46 (Mar 14, 2010 3:52:15 PM)
ok
westjlittle (Mar 14, 2010 3:53:09 PM)
Jim won't say how much he pays his nurse
pete46 (Mar 14, 2010 3:53:27 PM)
why not?
westjlittle (Mar 14, 2010 3:53:43 PM)
????
pete46 (Mar 14, 2010 3:54:17 PM)
in reading back, i think he is looking for the missing message right now
pete46 (Mar 14, 2010 3:54:45 PM)
how many nurses does he have?
westjlittle (Mar 14, 2010 3:55:00 PM)
1
pete46 (Mar 14, 2010 3:55:20 PM)
does she travel to fla with him?
westjlittle (Mar 14, 2010 3:55:54 PM)
someone there
pete46 (Mar 14, 2010 3:56:30 PM)
so a different nurse at each location
westjlittle (Mar 14, 2010 3:56:43 PM)
dunno
pete46 (Mar 14, 2010 3:57:01 PM)
maybe he pays one less than the other and doesnt want to post it lol
westjlittle (Mar 14, 2010 3:57:14 PM)
i guess
pete46 (Mar 14, 2010 3:57:32 PM)
doesnt want lower paid one to find out :)
pete46 (Mar 14, 2010 3:58:16 PM)
is there a set rate for the nurses jim?
westjlittle (Mar 14, 2010 3:58:58 PM)
I am trying to budget the plan B
pete46 (Mar 14, 2010 3:59:16 PM)
i see
westjlittle (Mar 14, 2010 4:00:32 PM)
any work on your plan b?
pete46 (Mar 14, 2010 4:01:02 PM)
my plan b is to do a lot of crying lol
pete46 (Mar 14, 2010 4:01:45 PM)
actually i have filled out apps for local nursing homes. also looking into assisted living again as i think i could last at one for a while
westjlittle (Mar 14, 2010 4:02:02 PM)
Picked out a street corner?
pete46 (Mar 14, 2010 4:02:08 PM)
haha
pete46 (Mar 14, 2010 4:02:46 PM)
need an outlet to charge my pwc thats all
pete46 (Mar 14, 2010 4:02:58 PM)
lol
pete46 (Mar 14, 2010 4:03:51 PM)
celtics are making a comeback
westjlittle (Mar 14, 2010 4:05:53 PM)
So they said my shower would be after lunch
westjlittle (Mar 14, 2010 4:06:33 PM)
They did not say how much after
pete46 (Mar 14, 2010 4:06:39 PM)
didnt say which lunch lol
pete46 (Mar 14, 2010 4:08:39 PM)
how are the bed baths, feel clean afterwards?
pete46 (Mar 14, 2010 4:09:38 PM)
afraid if i progress much more and dont move, thats what i'll be having
westjlittle (Mar 14, 2010 4:10:21 PM)
They gave me a bath at midnight last week -- not really clean
pete46 (Mar 14, 2010 4:10:49 PM)
midnight, why so late?
westjlittle (Mar 14, 2010 4:12:48 PM)
Most of the CNAs use wipes -- they suck -- if they use water and washcloth they are ok
pete46 (Mar 14, 2010 4:13:49 PM)
does your toilet have a bidet there?
pete46 (Mar 14, 2010 4:15:09 PM)
or do you use bed pans all the time
westjlittle (Mar 14, 2010 4:15:49 PM)
You have to ask why ? They are not staffed
pete46 (Mar 14, 2010 4:16:30 PM)
so get bath at any time, i never heard of that before
westjlittle (Mar 14, 2010 4:16:40 PM)
bedpan always
westjlittle (Mar 14, 2010 4:20:10 PM)
They are supposed to give a bed bath everyday to everyone but won't do it unless you ask
pete46 (Mar 14, 2010 4:21:39 PM)
and even if you ask, have no idea when
westjlittle (Mar 14, 2010 4:21:46 PM)
They are supposed to brush my teeth twice a day same story
westjlittle (Mar 14, 2010 4:21:56 PM)
yes
pete46 (Mar 14, 2010 4:23:16 PM)
jim, dont they have some sort of regulations? it sounds like prisoners are treated better
westjlittle (Mar 14, 2010 4:24:42 PM)
I have complained all the way up the chain -- they don't care
pete46 (Mar 14, 2010 4:25:03 PM)
state rep?
westjlittle (Mar 14, 2010 4:25:56 PM)
no
pete46 (Mar 14, 2010 4:26:08 PM)
there must be some govt agency that monitors them
westjlittle (Mar 14, 2010 4:26:13 PM)
no idea
pete46 (Mar 14, 2010 4:26:35 PM)
of course in the economy with all the cuts. everything is backlogged
pete46 (Mar 14, 2010 4:26:55 PM)
thats what supposedly is delaying my masshealth review
pete46 (Mar 14, 2010 4:27:06 PM)
cuts in personnel
CRIS (Mar 14, 2010 4:27:52 PM)
(This user has entered Living with ALS)
westjlittle (Mar 14, 2010 4:27:52 PM)
If I got a bedsore we could complain but they do just enough
CRIS (Mar 14, 2010 4:28:26 PM)
hello all you fine gentlemen
pete46 (Mar 14, 2010 4:28:36 PM)
their legal dept needs to review my pooled trust. it is very plain, uncomplicated, standard form i submitted, it took them 2 months to approve steve salings
pete46 (Mar 14, 2010 4:29:12 PM)
my caseworker only works 32 hours a week now
pete46 (Mar 14, 2010 4:29:18 PM)
hi cris
westjlittle (Mar 14, 2010 4:29:32 PM)
I just stink no crime there
pete46 (Mar 14, 2010 4:29:56 PM)
haha
westjlittle (Mar 14, 2010 4:30:12 PM)
hi cris
CRIS (Mar 14, 2010 4:30:13 PM)
don't they give you a bath at the hospital?
CRIS (Mar 14, 2010 4:30:32 PM)
a sponge bath, at least
Jim_VA (Mar 14, 2010 4:31:02 PM)
hi cris
westjlittle (Mar 14, 2010 4:31:44 PM)
Perhaps pete can give you summery
CRIS (Mar 14, 2010 4:32:03 PM)
ok...sorry
pete46 (Mar 14, 2010 4:32:27 PM)
its a crazy place cris, he gets a shower about once a week.
CRIS (Mar 14, 2010 4:32:48 PM)
yuck
pete46 (Mar 14, 2010 4:32:56 PM)
supposed to get a bed bath every day but if yo dont ask they wont give you one
pete46 (Mar 14, 2010 4:33:23 PM)
also never know what time you will get it. sometimes midnite!
CRIS (Mar 14, 2010 4:34:00 PM)
can't he ask, via computer?
pete46 (Mar 14, 2010 4:34:04 PM)
they told him today he would have a shower after lunch. hes still waiting
pete46 (Mar 14, 2010 4:34:28 PM)
yes he can ask but shouldnt have to
CRIS (Mar 14, 2010 4:34:38 PM)
I agree
CRIS (Mar 14, 2010 4:35:04 PM)
are you going home next week, jim?
westjlittle (Mar 14, 2010 4:35:26 PM)
yes
CRIS (Mar 14, 2010 4:35:36 PM)
wonderful
Jim_VA (Mar 14, 2010 4:37:05 PM)
it has already started experts say patients are getting too much treatment
CRIS (Mar 14, 2010 4:37:34 PM)
who told them that?
pete46 (Mar 14, 2010 4:37:35 PM)
they should check out jim
pete46 (Mar 14, 2010 4:39:04 PM)
wb jim
CRIS (Mar 14, 2010 4:39:50 PM)
I swear, next thing you know, they will put the elderly and disable in a separate state to look out for themselves....oh brother
Jim_VA (Mar 14, 2010 4:40:04 PM)
healthy experts ty
Stephen0386 (Mar 14, 2010 4:40:58 PM)
(This user has entered Living with ALS)
CRIS (Mar 14, 2010 4:41:01 PM)
what we need is more home health care....don't they see that
Stephen0386 (Mar 14, 2010 4:41:09 PM)
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Stephen0386 (Mar 14, 2010 4:41:18 PM)
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Stephen0386 (Mar 14, 2010 4:41:23 PM)
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pete46 (Mar 14, 2010 4:41:24 PM)
thats true cris
CRIS (Mar 14, 2010 4:41:59 PM)
especially with all the baby boomers coming
pete46 (Mar 14, 2010 4:42:37 PM)
it seems that way and less costly than nursing homes
Jim_VA (Mar 14, 2010 4:44:04 PM)
first step toward social med
CRIS (Mar 14, 2010 4:44:31 PM)
is that bad?
pete46 (Mar 14, 2010 4:46:03 PM)
i charge my pwc while on computer. sometimes for hours at a time. it never gets fully charged for some reason.
Jim_VA (Mar 14, 2010 4:46:09 PM)
yes
pete46 (Mar 14, 2010 4:47:00 PM)
bbl, corned beef dinner. yummy, happy st patricks day!
CRIS (Mar 14, 2010 4:47:40 PM)
bye pete, think I will leave too....have a good evening fellas
CRIS (Mar 14, 2010 4:48:34 PM)
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westjlittle (Mar 14, 2010 4:49:17 PM)
bye
westjlittle (Mar 14, 2010 4:50:52 PM)
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Jim_VA (Mar 14, 2010 5:02:00 PM)
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pete46 (Mar 14, 2010 5:12:55 PM)
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