Living with ALS

aeras (Nov 18, 2007 3:59:33 PM)
(This user has entered Living with ALS)

aeras (Nov 18, 2007 3:59:48 PM)
hello Jim

Jim_VA (Nov 18, 2007 4:00:48 PM)
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Jim_VA (Nov 18, 2007 4:01:59 PM)
(This user has entered Living with ALS)

aeras (Nov 18, 2007 4:02:03 PM)
I guess I got on to late to catch you last week.

Jim_VA (Nov 18, 2007 4:03:32 PM)
Hi Ellen

aeras (Nov 18, 2007 4:03:50 PM)
no Al

Jim_VA (Nov 18, 2007 4:04:41 PM)
lol Hi Al

aeras (Nov 18, 2007 4:04:50 PM)
I met you last week

Jim_VA (Nov 18, 2007 4:05:09 PM)
yes

Jim_VA (Nov 18, 2007 4:05:22 PM)
i remember

Jim_VA (Nov 18, 2007 4:06:17 PM)
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Jim_VA (Nov 18, 2007 4:06:24 PM)
(This user has entered Living with ALS)

aeras (Nov 18, 2007 4:06:41 PM)
So I missed you on both chat nights after Sunday

aeras (Nov 18, 2007 4:07:05 PM)
and here we are at Sunday again

Jim_VA (Nov 18, 2007 4:08:04 PM)
i am having pc problems

Jim_VA (Nov 18, 2007 4:08:37 PM)
yes

aeras (Nov 18, 2007 4:08:43 PM)
I can tell, you have been booted twice already since I've been on

Jim_VA (Nov 18, 2007 4:10:08 PM)
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Jim_VA (Nov 18, 2007 4:10:12 PM)
(This user has entered Living with ALS)

Jim_VA (Nov 18, 2007 4:11:17 PM)
a pain

aeras (Nov 18, 2007 4:12:30 PM)
I hope it straightens out for you soon

Jim_VA (Nov 18, 2007 4:12:58 PM)
did you get to the clinic

Jim_VA (Nov 18, 2007 4:13:09 PM)
me to

aeras (Nov 18, 2007 4:13:28 PM)
not yet

Jim_VA (Nov 18, 2007 4:14:15 PM)
ah

aeras (Nov 18, 2007 4:15:20 PM)
I had a spinal tap on Thursday and have been having headaches up to today

aeras (Nov 18, 2007 4:16:28 PM)
I,m still not sure they have classified this as ALS as yet

Jim_VA (Nov 18, 2007 4:17:12 PM)
I got my tube changed during the week

aeras (Nov 18, 2007 4:17:47 PM)
Iwashed my bi-pap Today

aeras (Nov 18, 2007 4:18:23 PM)
Its somuch nicer to have fresh clean equipment

Jim_VA (Nov 18, 2007 4:19:55 PM)
i hope that it is not ALS

Jim_VA (Nov 18, 2007 4:20:08 PM)
yes

aeras (Nov 18, 2007 4:21:23 PM)
I hope so as well but 3 out of 4 Drs. concur that I do

Jim_VA (Nov 18, 2007 4:21:49 PM)
how long have you had symptoms

aeras (Nov 18, 2007 4:22:01 PM)
over a year

Jim_VA (Nov 18, 2007 4:23:05 PM)
bummer

aeras (Nov 18, 2007 4:24:15 PM)
I met your buddy Alin the other day, good kid a little crazy but good

Jim_VA (Nov 18, 2007 4:26:42 PM)
the only good thing about a dx is medicare

Jim_VA (Nov 18, 2007 4:28:10 PM)
yeS he is

Jim_VA (Nov 18, 2007 4:29:21 PM)
he is a character

aeras (Nov 18, 2007 4:29:57 PM)
I Haven't had a Dx appointment long enough to get a referal to MDS

Jim_VA (Nov 18, 2007 4:30:39 PM)
ah

Jim_VA (Nov 18, 2007 4:31:25 PM)
I got several i

Jim_VA (Nov 18, 2007 4:32:36 PM)
opinions

aeras (Nov 18, 2007 4:34:44 PM)
and I haven't been approved for disablity as yet

Jim_VA (Nov 18, 2007 4:35:48 PM)
they are an educated guess

aeras (Nov 18, 2007 4:36:06 PM)
they all are

Jim_VA (Nov 18, 2007 4:36:42 PM)
lol

aeras (Nov 18, 2007 4:37:08 PM)
at least I hope their Educated

Jim_VA (Nov 18, 2007 4:38:55 PM)
how long have you been out of work

aeras (Nov 18, 2007 4:39:36 PM)
about a year and a half

Jim_VA (Nov 18, 2007 4:40:09 PM)
u

Jim_VA (Nov 18, 2007 4:40:37 PM)
yikes

aeras (Nov 18, 2007 4:41:17 PM)
Its a good thing we have a couple of very good Church families

Jim_VA (Nov 18, 2007 4:42:02 PM)
do you have insurance

aeras (Nov 18, 2007 4:42:07 PM)
They helped out immensly

Jim_VA (Nov 18, 2007 4:43:23 PM)
yes; they do

aeras (Nov 18, 2007 4:43:57 PM)
My wife wife works in the school system and pays for me and my son

aeras (Nov 18, 2007 4:44:41 PM)
it cost her about half her pay per month

Jim_VA (Nov 18, 2007 4:44:58 PM)
that is good

Jim_VA (Nov 18, 2007 4:46:18 PM)
that is bad

aeras (Nov 18, 2007 4:47:10 PM)
It's not so bad as not having Insurance

Jim_VA (Nov 18, 2007 4:51:02 PM)
for sue

Jim_VA (Nov 18, 2007 4:51:23 PM)
Sure

aeras (Nov 18, 2007 4:51:36 PM)
i knew that

aeras (Nov 18, 2007 4:51:46 PM)
lol

Jim_VA (Nov 18, 2007 4:52:14 PM)
lol

Jim_VA (Nov 18, 2007 4:53:43 PM)
be impossible without it

Jim_VA (Nov 18, 2007 4:55:11 PM)
my first 5 weeks was over 125k

aeras (Nov 18, 2007 4:56:10 PM)
when I found out how much that Rilutek ( the only approved med) for ALS I nearly went through the roof

aeras (Nov 18, 2007 4:57:43 PM)
cost

Jim_VA (Nov 18, 2007 4:57:57 PM)
i have been taking it since 2002

Jim_VA (Nov 18, 2007 4:58:38 PM)
yes very expensive

aeras (Nov 18, 2007 4:58:55 PM)
without insurance its almost $1000 amonth

aeras (Nov 18, 2007 4:59:10 PM)
985

Jim_VA (Nov 18, 2007 4:59:30 PM)
yes

aeras (Nov 18, 2007 5:00:38 PM)
you need to have insurance or be indepently wealthy

Jim_VA (Nov 18, 2007 5:01:16 PM)
I pay about 200

Jim_VA (Nov 18, 2007 5:01:57 PM)
Bill Gates ew

aeras (Nov 18, 2007 5:02:34 PM)
ya

Jim_VA (Nov 18, 2007 5:03:48 PM)
would complain about the prices

Jim_VA (Nov 18, 2007 5:05:50 PM)
it is terrible

Jim_VA (Nov 18, 2007 5:07:21 PM)
some countries cover everything

aeras (Nov 18, 2007 5:08:12 PM)
We were just talking about socialized medicine

Jim_VA (Nov 18, 2007 5:10:42 PM)
I am not sure the Netherlands is, one

aeras (Nov 18, 2007 5:10:59 PM)
Canada is one

Jim_VA (Nov 18, 2007 5:12:04 PM)
Japan may be

aeras (Nov 18, 2007 5:12:36 PM)
yeah! but the USA isn't

Jim_VA (Nov 18, 2007 5:14:06 PM)
Canada is social

Jim_VA (Nov 18, 2007 5:15:03 PM)
for sure

aeras (Nov 18, 2007 5:15:06 PM)
that was what we were talking about here at my house

aeras (Nov 18, 2007 5:16:01 PM)
those are the countries that pay for your meds

Jim_VA (Nov 18, 2007 5:17:26 PM)
good and bad in social med

aeras (Nov 18, 2007 5:17:35 PM)
Yep

Jim_VA (Nov 18, 2007 5:21:49 PM)
Canada and UK have problems

aeras (Nov 18, 2007 5:23:38 PM)
all we need is some one to say its ok to do stem cell research

Jim_VA (Nov 18, 2007 5:24:00 PM)
yes

Jim_VA (Nov 18, 2007 5:24:56 PM)
it will come

aeras (Nov 18, 2007 5:26:20 PM)
They say there are ways to get stem cells without hurting the fetus through the umbelical cord

Jim_VA (Nov 18, 2007 5:26:57 PM)
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aeras (Nov 18, 2007 5:36:21 PM)
(This user has left DigiChat)