Living with ALS

LadyP (Oct 14, 2009 6:00:01 PM)
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LadyP (Oct 14, 2009 6:01:13 PM)
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Jim_VA (Oct 14, 2009 6:06:47 PM)
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LadyP (Oct 14, 2009 6:07:10 PM)
hi, Jim

Jim_VA (Oct 14, 2009 6:09:51 PM)
Hi how are you tonight

LadyP (Oct 14, 2009 6:12:38 PM)
i'm good. how about you?

Jim_VA (Oct 14, 2009 6:14:20 PM)
I am fine ty

LadyP (Oct 14, 2009 6:15:32 PM)
is it getting colder where you are? we had some frost today.

Jim_VA (Oct 14, 2009 6:18:24 PM)
ouch I am going to FL Sat

LadyP (Oct 14, 2009 6:21:09 PM)
are you packed yet? My husband & I went to Yellowstone Nat'l Park last month. My son had to pack for me because my hans aren't great.

Jim_VA (Oct 14, 2009 6:21:26 PM)
I am in Arlington VA now

Jim_VA (Oct 14, 2009 6:21:49 PM)
no

LadyP (Oct 14, 2009 6:21:51 PM)
beautiful city

Jim_VA (Oct 14, 2009 6:22:38 PM)
yes it is

LadyP (Oct 14, 2009 6:23:39 PM)
i haven't been ib awhile.

Jim_VA (Oct 14, 2009 6:24:30 PM)
where are you

LadyP (Oct 14, 2009 6:24:57 PM)
near York, in PA

Jim_VA (Oct 14, 2009 6:25:59 PM)
ah not far

LadyP (Oct 14, 2009 6:27:18 PM)
no we can get to DC in a couple hours, or ride the Metro in

Jim_VA (Oct 14, 2009 6:28:34 PM)
use to go to drag races there

LadyP (Oct 14, 2009 6:29:10 PM)
i bet it was noisy

Jim_VA (Oct 14, 2009 6:30:23 PM)
yes

LadyP (Oct 14, 2009 6:31:12 PM)
is it just a summer event?

Jim_VA (Oct 14, 2009 6:31:44 PM)
do you have ALS

LadyP (Oct 14, 2009 6:34:36 PM)
ys. started losing fine motor skills in right hand in 8/08. I thought it was carpal tunnel. In Ja. I began the testing and different docs and got dx 5/09. How about you?

Jim_VA (Oct 14, 2009 6:35:21 PM)
yes i don't think york has them anymore

Jim_VA (Oct 14, 2009 6:37:00 PM)
yes diagnosed 8/01

LadyP (Oct 14, 2009 6:37:14 PM)
drag races? there's a place between here and Carlisle that has them. I can't remember the name

LadyP (Oct 14, 2009 6:38:24 PM)
I fell in May and broke my right arm, so that didn't help

Jim_VA (Oct 14, 2009 6:38:57 PM)
about 20 miles?

LadyP (Oct 14, 2009 6:39:09 PM)
yes

Jim_VA (Oct 14, 2009 6:40:22 PM)
that is s shame

LadyP (Oct 14, 2009 6:41:58 PM)
i am lucky because my son is out of work so he helps me out and does the cooking, etc.

Jim_VA (Oct 14, 2009 6:42:45 PM)
do you have a wheelchair

LadyP (Oct 14, 2009 6:44:07 PM)
i use a walker in the house and a transport chair when I go out. how about you?

Jim_VA (Oct 14, 2009 6:44:45 PM)
that is nice of him

LadyP (Oct 14, 2009 6:46:14 PM)
he's a good cook. When he finally marries, he'll be a good catch (he's 25)

Jim_VA (Oct 14, 2009 6:47:52 PM)
yes a power chair

LadyP (Oct 14, 2009 6:49:44 PM)
does that work well for you? i'm thinking i'll need one down the road, but i can't use my right

LadyP (Oct 14, 2009 6:50:00 PM)
*hand

Jim_VA (Oct 14, 2009 6:50:28 PM)
i am on a ventilator

LadyP (Oct 14, 2009 6:51:26 PM)
how long? i know that's coming, too

Jim_VA (Oct 14, 2009 6:53:06 PM)
i can't use either hand

LadyP (Oct 14, 2009 6:54:07 PM)
are you using a device to type on the computer?

Jim_VA (Oct 14, 2009 6:55:42 PM)
since 5/!7/01

LadyP (Oct 14, 2009 6:58:03 PM)
you seem to do well with it. i can type with one finger on my left hand. for long emails, i started using speech to text software

Jim_VA (Oct 14, 2009 6:58:39 PM)
yes adaptive equipment

Jim_VA (Oct 14, 2009 6:59:52 PM)
that is good

LadyP (Oct 14, 2009 7:00:06 PM)
i just got info to participate in a research study for a computer interface device

Jim_VA (Oct 14, 2009 7:02:37 PM)
you,may never have to go on a vent

Jim_VA (Oct 14, 2009 7:04:35 PM)
that is amazing technology

LadyP (Oct 14, 2009 7:05:10 PM)
that's what I find frustrating about ALS. It's hard to prepare mantally when you don' know what's down the road because everyone's different.

Jim_VA (Oct 14, 2009 7:06:43 PM)
I don't worry about it

LadyP (Oct 14, 2009 7:07:54 PM)
that's what i'm trying to do now, just get through one day at a time

Jim_VA (Oct 14, 2009 7:09:09 PM)
I got it all at once

LadyP (Oct 14, 2009 7:09:51 PM)
that must have been hard

Jim_VA (Oct 14, 2009 7:14:26 PM)
I know people who have had it 35 years and no vent

LadyP (Oct 14, 2009 7:15:17 PM)
WOW! I really had noo idea.

Jim_VA (Oct 14, 2009 7:17:33 PM)
not hard i had great help

LadyP (Oct 14, 2009 7:19:00 PM)
i've realized that's really important. my son tries to make me laugh every day

Jim_VA (Oct 14, 2009 7:20:47 PM)
do you have trouble breathing or swallowing

LadyP (Oct 14, 2009 7:22:11 PM)
breathing-no. I sometimes start to choke when I swallow my tea in the morning

Jim_VA (Oct 14, 2009 7:24:10 PM)
laughter is important

LadyP (Oct 14, 2009 7:24:29 PM)
my respiratory rate is checked at clinic

LadyP (Oct 14, 2009 7:25:19 PM)
my son says no crying on days with a "y"!

Jim_VA (Oct 14, 2009 7:28:53 PM)
watch the swallowing it is probably the second biggest killer

LadyP (Oct 14, 2009 7:29:28 PM)
good advice

LadyP (Oct 14, 2009 7:30:14 PM)
i usually spray everything near me. it's nasty

Jim_VA (Oct 14, 2009 7:31:31 PM)
respiratory failure is probably first

LadyP (Oct 14, 2009 7:34:18 PM)
i think that's why it's checked at my clinic visits. do you go to an ALS clinic?

Jim_VA (Oct 14, 2009 7:34:31 PM)
I have only been back to the hospital 3 times

Jim_VA (Oct 14, 2009 7:35:24 PM)
no but I should

LadyP (Oct 14, 2009 7:36:37 PM)
i've had 2 clinic visits at Hershey medical center. I go agaiin next month. A whole team of people help you

LadyP (Oct 14, 2009 7:38:12 PM)
i got most of my equipment free from their loaner closet

Jim_VA (Oct 14, 2009 7:38:54 PM)
George Washington is only 15 away

LadyP (Oct 14, 2009 7:39:57 PM)
we have a 45 min. frive and clinic starts at 8 AM ARRRGH!

Jim_VA (Oct 14, 2009 7:40:20 PM)
minutes

LadyP (Oct 14, 2009 7:41:14 PM)
do you go for regular check-ups?

Jim_VA (Oct 14, 2009 7:42:50 PM)
Johns Hopkins is about 1 hr'

LadyP (Oct 14, 2009 7:43:56 PM)
many people is this area go there for many reasons

Jim_VA (Oct 14, 2009 7:45:20 PM)
no my doctor wants me to

Jim_VA (Oct 14, 2009 7:47:30 PM)
I don't have much to check

LadyP (Oct 14, 2009 7:47:42 PM)
i like that there's a rhysical & occupational therapits, a social worker, the doctor and others to help. it lasts 3 hours

LadyP (Oct 14, 2009 7:49:31 PM)
we're trying to hire my son as my caregiver so he can get paid. they helped us start that paperwork

LadyP (Oct 14, 2009 7:50:08 PM)
do you take rilutek?

Jim_VA (Oct 14, 2009 7:52:47 PM)
ot said that she was going to teach me to wash clothes

LadyP (Oct 14, 2009 7:53:27 PM)
not important.

Jim_VA (Oct 14, 2009 7:53:57 PM)
yes since dx

LadyP (Oct 14, 2009 7:55:12 PM)
my washer's in the basement, and i can't do steps. my son does my wash

Jim_VA (Oct 14, 2009 7:56:42 PM)
my wife said this is a waste of time

LadyP (Oct 14, 2009 7:57:48 PM)
it may be different everywhere

Jim_VA (Oct 14, 2009 7:58:01 PM)
so was ours

Jim_VA (Oct 14, 2009 7:59:22 PM)
yes it probably is]

LadyP (Oct 14, 2009 7:59:37 PM)
i need to go. my son has some things i need to do.

LadyP (Oct 14, 2009 8:00:09 PM)
have a good rest of the evening

Jim_VA (Oct 14, 2009 8:00:31 PM)
k take care

LadyP (Oct 14, 2009 8:00:33 PM)
thanks for chatting

LadyP (Oct 14, 2009 8:00:46 PM)
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Granpido (Oct 14, 2009 9:07:28 PM)
(This user has entered Living with ALS)

Granpido (Oct 14, 2009 9:08:11 PM)
Hi Jim

Granpido (Oct 14, 2009 9:09:58 PM)
Are you all by your lonesome?

Jim_VA (Oct 14, 2009 9:12:50 PM)
Hi John

Granpido (Oct 14, 2009 9:13:07 PM)
How are you doing?

Jim_VA (Oct 14, 2009 9:14:45 PM)
how are you

Granpido (Oct 14, 2009 9:15:23 PM)
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Jim_VA (Oct 14, 2009 9:17:19 PM)
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Granpido (Oct 14, 2009 9:22:08 PM)
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Granpido (Oct 14, 2009 9:24:00 PM)
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