Living with ALS 2
Bedbug (Nov 26, 2007 8:55:36 PM)
Bedbug (Nov 26, 2007 8:57:05 PM)
hello
Bedbug (Nov 26, 2007 8:57:42 PM)
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Bedbug (Nov 26, 2007 8:58:02 PM)
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Bedbug (Nov 26, 2007 8:59:20 PM)
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aeras (Nov 26, 2007 9:06:16 PM)
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aeras (Nov 26, 2007 9:08:30 PM)
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aeras (Nov 26, 2007 9:13:44 PM)
(This user has entered Living with ALS 2)
Jim_VA (Nov 26, 2007 9:16:25 PM)
(This user has entered Living with ALS 2)
aeras (Nov 26, 2007 9:16:41 PM)
hello Jim
Jim_VA (Nov 26, 2007 9:17:31 PM)
hi Al/Ellen ;0)
aeras (Nov 26, 2007 9:17:39 PM)
Al
aeras (Nov 26, 2007 9:18:06 PM)
just got home from Connecticut
Jim_VA (Nov 26, 2007 9:18:23 PM)
how are you
aeras (Nov 26, 2007 9:18:41 PM)
I am doing ok how about you
Jim_VA (Nov 26, 2007 9:19:25 PM)
wow big trip
aeras (Nov 26, 2007 9:19:48 PM)
yeah alot of car time
Jim_VA (Nov 26, 2007 9:20:58 PM)
I am fine except computer is sick
aeras (Nov 26, 2007 9:21:39 PM)
what is wrong with the computer
Jim_VA (Nov 26, 2007 9:22:02 PM)
I have a friend in Mystic Ct
aeras (Nov 26, 2007 9:22:48 PM)
that is by the shore
aeras (Nov 26, 2007 9:23:13 PM)
I lived inland more to central
Jim_VA (Nov 26, 2007 9:23:45 PM)
I think the graphics card is going
Jim_VA (Nov 26, 2007 9:24:34 PM)
yes and the casino
aeras (Nov 26, 2007 9:24:56 PM)
that can't be good
Jim_VA (Nov 26, 2007 9:25:17 PM)
she is a nurse
aeras (Nov 26, 2007 9:25:19 PM)
I have never been to the casino
aeras (Nov 26, 2007 9:26:01 PM)
that is a good person to know
Jim_VA (Nov 26, 2007 9:26:19 PM)
neither have i but my wife has
redcountry (Nov 26, 2007 9:26:35 PM)
(This user has entered Living with ALS 2)
redcountry (Nov 26, 2007 9:26:58 PM)
hi jim hi aeras
aeras (Nov 26, 2007 9:26:59 PM)
hello redcountry
aeras (Nov 26, 2007 9:27:18 PM)
I'm Al
redcountry (Nov 26, 2007 9:27:45 PM)
my name is julie, my husband steve has als,
Jim_VA (Nov 26, 2007 9:27:46 PM)
yes and he is a pharmaceutical scientist
Jim_VA (Nov 26, 2007 9:28:06 PM)
hi julie
aeras (Nov 26, 2007 9:28:22 PM)
hello julie
aeras (Nov 26, 2007 9:28:49 PM)
I have als and my wife found this chat for me
redcountry (Nov 26, 2007 9:29:17 PM)
i think i may have visited with her
Jim_VA (Nov 26, 2007 9:29:39 PM)
The eye candy got the can huh
redcountry (Nov 26, 2007 9:30:06 PM)
lol
Jim_VA (Nov 26, 2007 9:30:19 PM)
;o)
redcountry (Nov 26, 2007 9:30:34 PM)
how have you been jim
Jim_VA (Nov 26, 2007 9:30:56 PM)
they don't like l0
redcountry (Nov 26, 2007 9:31:13 PM)
my husbands first symptom way in his thumb
Jim_VA (Nov 26, 2007 9:31:15 PM)
losing
redcountry (Nov 26, 2007 9:31:24 PM)
losing what
redcountry (Nov 26, 2007 9:31:52 PM)
no one will play me at backgammon they quit right before i win
aeras (Nov 26, 2007 9:32:15 PM)
I like backgammon
Jim_VA (Nov 26, 2007 9:32:24 PM)
football games
redcountry (Nov 26, 2007 9:32:30 PM)
how did yours start aeras and what did you do for a living
redcountry (Nov 26, 2007 9:32:58 PM)
are you for the dolphins jim
aeras (Nov 26, 2007 9:32:58 PM)
I have been an electrician
aeras (Nov 26, 2007 9:33:41 PM)
I think it was the change in breathing I noticed first
Jim_VA (Nov 26, 2007 9:33:42 PM)
i am fine how is steve
redcountry (Nov 26, 2007 9:33:43 PM)
did you ever do work on the power lines on the poles
aeras (Nov 26, 2007 9:33:52 PM)
no
redcountry (Nov 26, 2007 9:34:09 PM)
steve has been progressing
aeras (Nov 26, 2007 9:34:18 PM)
I wired everything from houses to factories
Jim_VA (Nov 26, 2007 9:34:31 PM)
sorry
redcountry (Nov 26, 2007 9:34:41 PM)
and watching every football game that is on, they are all good games you know
aeras (Nov 26, 2007 9:34:50 PM)
how far alon is Steve
aeras (Nov 26, 2007 9:34:58 PM)
along
Jim_VA (Nov 26, 2007 9:35:21 PM)
I am a Redskins fan
redcountry (Nov 26, 2007 9:35:28 PM)
steve was dx in june of 2005
aeras (Nov 26, 2007 9:35:59 PM)
I was dx just about 3 mo. ago
redcountry (Nov 26, 2007 9:36:20 PM)
started as limb onset, and is now bed ridden and on bipap feeding tube and eye gaze communication
aeras (Nov 26, 2007 9:37:00 PM)
wow
aeras (Nov 26, 2007 9:37:23 PM)
the things I have to look forward to
redcountry (Nov 26, 2007 9:37:35 PM)
yes, his attitude is still good and he is still very stubborn, hehehhe
Jim_VA (Nov 26, 2007 9:38:18 PM)
I did want to tell you but Maria was on PPX
aeras (Nov 26, 2007 9:38:18 PM)
that is good
redcountry (Nov 26, 2007 9:38:44 PM)
she has passed away, correct
Jim_VA (Nov 26, 2007 9:39:27 PM)
from the first trial yes July
redcountry (Nov 26, 2007 9:39:39 PM)
steve is no longer in the study, it is to hard on him to do the trip,
redcountry (Nov 26, 2007 9:40:07 PM)
how big of a dose did she get to
Jim_VA (Nov 26, 2007 9:40:47 PM)
she told me it was not working for her
redcountry (Nov 26, 2007 9:41:20 PM)
did she quit the study or had she stayed on it
Jim_VA (Nov 26, 2007 9:41:44 PM)
her dad was an MD
redcountry (Nov 26, 2007 9:42:45 PM)
my opinion is that to do a study with a progression disease, it needs to be aggressive
Jim_VA (Nov 26, 2007 9:42:51 PM)
she had a compassionate exemption
redcountry (Nov 26, 2007 9:43:30 PM)
what do you mean jim
redcountry (Nov 26, 2007 9:43:43 PM)
remember i am from nebraska
Jim_VA (Nov 26, 2007 9:43:51 PM)
she took it before the study started
Jim_VA (Nov 26, 2007 9:44:00 PM)
lol
redcountry (Nov 26, 2007 9:44:03 PM)
:)
redcountry (Nov 26, 2007 9:44:43 PM)
do you think that the disease progressed faster after she went off
Jim_VA (Nov 26, 2007 9:45:38 PM)
that comes from FDA for experimental drugs
aeras (Nov 26, 2007 9:45:40 PM)
I'm still here listening
redcountry (Nov 26, 2007 9:46:08 PM)
my husband worked in heating and air conditioning
redcountry (Nov 26, 2007 9:46:33 PM)
he is 47 i am 46
aeras (Nov 26, 2007 9:46:35 PM)
I hooked up pwer for guys like him
aeras (Nov 26, 2007 9:46:47 PM)
I'm 57
aeras (Nov 26, 2007 9:46:55 PM)
wife 50
Jim_VA (Nov 26, 2007 9:47:11 PM)
I am not sure that she quit taking it
redcountry (Nov 26, 2007 9:48:05 PM)
how many years did she have it
Jim_VA (Nov 26, 2007 9:48:06 PM)
I would have to ask her dad or doctor
Jim_VA (Nov 26, 2007 9:49:45 PM)
she probably started it in 2004 or 2005
redcountry (Nov 26, 2007 9:50:33 PM)
steve started on12/05
Jim_VA (Nov 26, 2007 9:51:12 PM)
I will see if I have her old emails
aeras (Nov 26, 2007 9:51:43 PM)
what is PPx
redcountry (Nov 26, 2007 9:51:49 PM)
do you have hobbys of favorite pass time, aeras
aeras (Nov 26, 2007 9:51:59 PM)
Al
redcountry (Nov 26, 2007 9:52:05 PM)
ppx is an experimental drug study
redcountry (Nov 26, 2007 9:52:12 PM)
whoops sorry a;
redcountry (Nov 26, 2007 9:52:13 PM)
al
aeras (Nov 26, 2007 9:52:25 PM)
thank you Julie
redcountry (Nov 26, 2007 9:53:11 PM)
are you hooked up with mda, and als associations
Jim_VA (Nov 26, 2007 9:53:15 PM)
the whole thing started over a girl named Beth or Bev
aeras (Nov 26, 2007 9:53:37 PM)
not yet I have not gotten a referral as yet
redcountry (Nov 26, 2007 9:54:33 PM)
sorry if i do not answer, quickly, i am with steve
aeras (Nov 26, 2007 9:54:51 PM)
hello steve
Jim_VA (Nov 26, 2007 9:54:58 PM)
no problem
redcountry (Nov 26, 2007 9:55:27 PM)
he says hello
redcountry (Nov 26, 2007 9:55:50 PM)
he has an eye gaze to talk with
redcountry (Nov 26, 2007 9:56:17 PM)
he uses his eyes to spell out words
aeras (Nov 26, 2007 9:56:19 PM)
that is helpful I take it
redcountry (Nov 26, 2007 9:56:55 PM)
it is very useful both of us would be lost with out it
aeras (Nov 26, 2007 9:56:55 PM)
cool I must remember to get one before I need it
Jim_VA (Nov 26, 2007 9:57:25 PM)
does your insurance require a referral Al
redcountry (Nov 26, 2007 9:57:39 PM)
not only can he talk but play cards and look on the internet
redcountry (Nov 26, 2007 9:59:08 PM)
brb
Jim_VA (Nov 26, 2007 9:59:09 PM)
where does he play cards
aeras (Nov 26, 2007 9:59:49 PM)
the MDA told her they neede a referral
Jim_VA (Nov 26, 2007 10:00:12 PM)
ah
Jim_VA (Nov 26, 2007 10:01:03 PM)
i have never been to them
aeras (Nov 26, 2007 10:01:59 PM)
where do you go then
Jim_VA (Nov 26, 2007 10:02:56 PM)
I think they do the best research and help financially
Jim_VA (Nov 26, 2007 10:03:18 PM)
I don't go
redcountry (Nov 26, 2007 10:03:26 PM)
back, he plays freecell all the time it is his favorite
aeras (Nov 26, 2007 10:03:51 PM)
I enjoy freecell
redcountry (Nov 26, 2007 10:04:14 PM)
mda will help some with wheelchair and communication devices
aeras (Nov 26, 2007 10:04:17 PM)
it is my favorite form of solitare
redcountry (Nov 26, 2007 10:04:34 PM)
here too
aeras (Nov 26, 2007 10:04:54 PM)
although I play spider too
Jim_VA (Nov 26, 2007 10:05:16 PM)
I have been to George Washington and Johns Hopkins
redcountry (Nov 26, 2007 10:05:26 PM)
als associations have different plans everywhere, but if you are near 2 use them bothe
aeras (Nov 26, 2007 10:06:04 PM)
I am still trying to get my disability
redcountry (Nov 26, 2007 10:06:13 PM)
here they help with respite care and the other with equipment
Jim_VA (Nov 26, 2007 10:06:17 PM)
I play on Pogo
redcountry (Nov 26, 2007 10:06:27 PM)
how long have you been out of work
aeras (Nov 26, 2007 10:06:43 PM)
like slingo
redcountry (Nov 26, 2007 10:06:43 PM)
i have never heard of pogo
redcountry (Nov 26, 2007 10:06:58 PM)
or slingo,
Jim_VA (Nov 26, 2007 10:07:26 PM)
Pogo.com
aeras (Nov 26, 2007 10:07:29 PM)
POgo games
redcountry (Nov 26, 2007 10:08:01 PM)
and they will pay you starting after six months
aeras (Nov 26, 2007 10:08:21 PM)
I
redcountry (Nov 26, 2007 10:08:22 PM)
i will have to check it out
aeras (Nov 26, 2007 10:08:30 PM)
am being patient
Jim_VA (Nov 26, 2007 10:09:10 PM)
I don't get ss
aeras (Nov 26, 2007 10:09:33 PM)
the jet is because I am ex Air Force
aeras (Nov 26, 2007 10:09:58 PM)
why not
redcountry (Nov 26, 2007 10:10:13 PM)
thats because you are postal
redcountry (Nov 26, 2007 10:10:15 PM)
heheheh
Jim_VA (Nov 26, 2007 10:10:59 PM)
julie the field looks like the swamp
redcountry (Nov 26, 2007 10:11:06 PM)
i know
aeras (Nov 26, 2007 10:11:20 PM)
???
redcountry (Nov 26, 2007 10:11:25 PM)
we have been at a pro game that looked like that
aeras (Nov 26, 2007 10:11:39 PM)
Oh football
Jim_VA (Nov 26, 2007 10:11:45 PM)
yes not enough quarters
redcountry (Nov 26, 2007 10:11:55 PM)
the chief vs the sea hawks
Jim_VA (Nov 26, 2007 10:12:01 PM)
for ss
redcountry (Nov 26, 2007 10:12:04 PM)
in i think 2003
aeras (Nov 26, 2007 10:12:45 PM)
I thought that was only unemployment
Jim_VA (Nov 26, 2007 10:12:50 PM)
all federal government
aeras (Nov 26, 2007 10:13:11 PM)
that went by quarters
redcountry (Nov 26, 2007 10:13:19 PM)
seven inches of rain from the time it started until it ended
Jim_VA (Nov 26, 2007 10:13:38 PM)
wow
aeras (Nov 26, 2007 10:13:46 PM)
wow
redcountry (Nov 26, 2007 10:14:00 PM)
we looked like rats but we had really good seats
aeras (Nov 26, 2007 10:14:08 PM)
swim suits anyone
redcountry (Nov 26, 2007 10:14:23 PM)
hehehe
redcountry (Nov 26, 2007 10:14:54 PM)
you couldnt even drink a beer it got all watered down
aeras (Nov 26, 2007 10:15:32 PM)
keep your mouth on the bottle neck
Jim_VA (Nov 26, 2007 10:15:50 PM)
i was under the civil service retirement system not social security
redcountry (Nov 26, 2007 10:15:51 PM)
no bottles only tap
Jim_VA (Nov 26, 2007 10:16:38 PM)
they phased that out
redcountry (Nov 26, 2007 10:16:45 PM)
a friend of mine worked in the post office and she has the same retirment
Jim_VA (Nov 26, 2007 10:17:18 PM)
csrs or fers
aeras (Nov 26, 2007 10:17:48 PM)
well I'm an sser
redcountry (Nov 26, 2007 10:17:58 PM)
is that one federal reserves
Jim_VA (Nov 26, 2007 10:18:06 PM)
lol
redcountry (Nov 26, 2007 10:18:11 PM)
lol
aeras (Nov 26, 2007 10:18:15 PM)
lol
redcountry (Nov 26, 2007 10:18:37 PM)
we had our life set to retire at 55
aeras (Nov 26, 2007 10:18:43 PM)
woke my wife up
Jim_VA (Nov 26, 2007 10:19:42 PM)
the one i am on was phased out about 1984
Jim_VA (Nov 26, 2007 10:20:16 PM)
i was retired
aeras (Nov 26, 2007 10:20:37 PM)
I hope they don't run out of money
Jim_VA (Nov 26, 2007 10:20:52 PM)
when it hit
Jim_VA (Nov 26, 2007 10:21:12 PM)
me too
redcountry (Nov 26, 2007 10:21:17 PM)
i would not be surprised as if they are all ready out of money
aeras (Nov 26, 2007 10:21:28 PM)
I figured I would of had to work to 67
aeras (Nov 26, 2007 10:22:09 PM)
10 years from now
redcountry (Nov 26, 2007 10:22:37 PM)
we married young, had a young family, saved alot, because when you work you dont spend money
Jim_VA (Nov 26, 2007 10:23:11 PM)
that would be nice huh
aeras (Nov 26, 2007 10:23:31 PM)
you didn't know how to go about it, thats all
aeras (Nov 26, 2007 10:23:48 PM)
yeah
Jim_VA (Nov 26, 2007 10:24:00 PM)
yes we did too
aeras (Nov 26, 2007 10:24:23 PM)
I spent good
redcountry (Nov 26, 2007 10:24:37 PM)
lol
aeras (Nov 26, 2007 10:25:09 PM)
my retirement is already spent
Jim_VA (Nov 26, 2007 10:25:15 PM)
our retirement is pretty good
redcountry (Nov 26, 2007 10:25:31 PM)
we have not touched retiremnet
redcountry (Nov 26, 2007 10:25:46 PM)
what would we spend it on
Jim_VA (Nov 26, 2007 10:26:19 PM)
we have to take it
redcountry (Nov 26, 2007 10:26:25 PM)
brb
Jim_VA (Nov 26, 2007 10:26:33 PM)
k
aeras (Nov 26, 2007 10:26:36 PM)
ok
redcountry (Nov 26, 2007 10:28:43 PM)
we had paid off our home 2 months before steve was dx
Jim_VA (Nov 26, 2007 10:29:15 PM)
I still have some in the thrift savings plan but they will force me to take that at 70
redcountry (Nov 26, 2007 10:30:00 PM)
so what are you going to spend that on,
redcountry (Nov 26, 2007 10:30:17 PM)
are you going to remodle the new place
Jim_VA (Nov 26, 2007 10:30:18 PM)
and some stocks
Jim_VA (Nov 26, 2007 10:30:50 PM)
no not necessary
redcountry (Nov 26, 2007 10:30:52 PM)
i have been doing some shopping on line,
redcountry (Nov 26, 2007 10:31:11 PM)
i am going to cancun in january
Jim_VA (Nov 26, 2007 10:31:24 PM)
i have too
Jim_VA (Nov 26, 2007 10:31:38 PM)
neat
redcountry (Nov 26, 2007 10:32:16 PM)
see i have never shopped on line before,
Jim_VA (Nov 26, 2007 10:32:35 PM)
ok if I join you?
redcountry (Nov 26, 2007 10:33:00 PM)
of course we will have a ball
Jim_VA (Nov 26, 2007 10:33:16 PM)
lol
Jim_VA (Nov 26, 2007 10:33:45 PM)
I always wanted a place in
redcountry (Nov 26, 2007 10:34:16 PM)
hey did you just see the play on tv the ball stuck in the mud on the field it just stopped
Jim_VA (Nov 26, 2007 10:34:20 PM)
Costa Rica
Jim_VA (Nov 26, 2007 10:34:35 PM)
yes
aeras (Nov 26, 2007 10:34:37 PM)
I had a 401k that I had to roll over to IRA
redcountry (Nov 26, 2007 10:35:22 PM)
steve has not changed a thing on his 401k it is still all in high risk
aeras (Nov 26, 2007 10:35:26 PM)
then I had to liquidate that IRA to pay bills like rent and power
Jim_VA (Nov 26, 2007 10:36:13 PM)
bummer
aeras (Nov 26, 2007 10:36:27 PM)
Ive been ouy of work for about a year and a half
redcountry (Nov 26, 2007 10:36:28 PM)
ouch
aeras (Nov 26, 2007 10:36:57 PM)
my wife still has hers
redcountry (Nov 26, 2007 10:37:02 PM)
if you are dx you will get paid all except 6 months of that
aeras (Nov 26, 2007 10:37:40 PM)
i have been dx I am just waiting for approval
redcountry (Nov 26, 2007 10:37:48 PM)
everybody has a six month waiting period
aeras (Nov 26, 2007 10:38:07 PM)
and my son gets some too
Jim_VA (Nov 26, 2007 10:38:14 PM)
my retirement continues until I die
redcountry (Nov 26, 2007 10:39:12 PM)
and if you do division of assets, you might be able to get medicaid
Jim_VA (Nov 26, 2007 10:39:33 PM)
my wifes does too
Jim_VA (Nov 26, 2007 10:40:22 PM)
yes a good idea
aeras (Nov 26, 2007 10:40:46 PM)
I am already looking into that as well
Jim_VA (Nov 26, 2007 10:41:31 PM)
my wife gets $53.00 a month ss
Jim_VA (Nov 26, 2007 10:41:46 PM)
lol
aeras (Nov 26, 2007 10:41:51 PM)
lol
redcountry (Nov 26, 2007 10:41:56 PM)
yikes
aeras (Nov 26, 2007 10:42:31 PM)
That is quite enough to live on
aeras (Nov 26, 2007 10:42:34 PM)
lol
Jim_VA (Nov 26, 2007 10:42:49 PM)
she had enough quarters
redcountry (Nov 26, 2007 10:43:01 PM)
well guys, i have to start getting ready for bed
aeras (Nov 26, 2007 10:43:13 PM)
good night
redcountry (Nov 26, 2007 10:43:22 PM)
you all take care, and it was nice to meet you al,
Jim_VA (Nov 26, 2007 10:43:37 PM)
she gets federal retirement also
redcountry (Nov 26, 2007 10:43:45 PM)
and jim try to stay out of trouble:)
aeras (Nov 26, 2007 10:43:48 PM)
my wife is already in bed, after that drive today
Jim_VA (Nov 26, 2007 10:44:07 PM)
gn julie Sleep Well
redcountry (Nov 26, 2007 10:44:12 PM)
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aeras (Nov 26, 2007 10:44:19 PM)
youb too Julie and Ssteve
aeras (Nov 26, 2007 10:44:38 PM)
oops too late
Jim_VA (Nov 26, 2007 10:44:57 PM)
she is a super gal
aeras (Nov 26, 2007 10:45:10 PM)
she seems to be
Jim_VA (Nov 26, 2007 10:45:36 PM)
great fun
aeras (Nov 26, 2007 10:46:07 PM)
were you on the earlier chat
Jim_VA (Nov 26, 2007 10:46:37 PM)
they are big Nebraska football fans
aeras (Nov 26, 2007 10:46:57 PM)
I like the Panthers
Jim_VA (Nov 26, 2007 10:47:30 PM)
no working on the computer
aeras (Nov 26, 2007 10:48:12 PM)
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Jim_VA (Nov 26, 2007 10:48:51 PM)
you are like me supporting a loser
Jim_VA (Nov 26, 2007 10:50:14 PM)
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aeras (Nov 26, 2007 10:52:06 PM)
(This user has entered Living with ALS 2)
aeras (Nov 26, 2007 10:53:19 PM)
well jim I got booted off AOL and when I got back on you were gone see you next time
aeras (Nov 26, 2007 10:53:25 PM)
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