Living with ALS 2
dian_na (Sep 15, 2008 7:57:30 PM)
dian_na (Sep 15, 2008 7:59:38 PM)
(This user has left DigiChat)
dian_na (Sep 15, 2008 7:59:43 PM)
(This user has entered Living with ALS 2)
dian_na (Sep 15, 2008 8:00:27 PM)
hmm I seem to be the only one here, or I'm not signed in correctly,, hmm let me see what to do what to do
dian_na (Sep 15, 2008 8:01:29 PM)
knock knock... who there? ohhhhhhhh just dianna
dian_na (Sep 15, 2008 8:02:07 PM)
ok i will try again in a little bit
dian_na (Sep 15, 2008 8:03:24 PM)
(This user has left DigiChat)
Jim_VA (Sep 15, 2008 8:09:27 PM)
(This user has entered Living with ALS 2)
redcountry (Sep 15, 2008 8:40:09 PM)
(This user has entered Living with ALS 2)
redcountry (Sep 15, 2008 8:40:34 PM)
well hello jim
Jim_VA (Sep 15, 2008 8:40:49 PM)
Hi Julie
redcountry (Sep 15, 2008 8:41:00 PM)
hows it going,
Jim_VA (Sep 15, 2008 8:41:25 PM)
how are you
Jim_VA (Sep 15, 2008 8:41:41 PM)
slow
redcountry (Sep 15, 2008 8:42:18 PM)
fine, peaches are done for the year and the pears are going strong
redcountry (Sep 15, 2008 8:42:33 PM)
fruit has been abundant this year
Jim_VA (Sep 15, 2008 8:42:52 PM)
great
redcountry (Sep 15, 2008 8:43:01 PM)
the veggies have hardly performed
redcountry (Sep 15, 2008 8:43:52 PM)
and after the pears comes apples, my mom and i are going to put up apple pie filling
Jim_VA (Sep 15, 2008 8:44:29 PM)
that is bad
redcountry (Sep 15, 2008 8:44:44 PM)
i had alot of company during peach harvest
Jim_VA (Sep 15, 2008 8:45:15 PM)
sounds good
redcountry (Sep 15, 2008 8:45:18 PM)
yes, i have enogh juice and stewed tomatos to get threw the winter
redcountry (Sep 15, 2008 8:46:02 PM)
have you been doing ok jim, i do think of you guys often
Jim_VA (Sep 15, 2008 8:46:05 PM)
super
Jim_VA (Sep 15, 2008 8:46:31 PM)
yes ty
redcountry (Sep 15, 2008 8:47:35 PM)
how has dick been, and have you heard from laura latly
Jim_VA (Sep 15, 2008 8:48:39 PM)
I would.like to see you playing cards
redcountry (Sep 15, 2008 8:49:14 PM)
i know see how i am
redcountry (Sep 15, 2008 8:49:36 PM)
i have been going threw some rough times
Jim_VA (Sep 15, 2008 8:50:21 PM)
dick is ok nothing from Laura
redcountry (Sep 15, 2008 8:51:45 PM)
are you going to fl this winter
Jim_VA (Sep 15, 2008 8:52:19 PM)
Dick was in last week
redcountry (Sep 15, 2008 8:53:12 PM)
tell him i hope he has been staying out of trouble
Jim_VA (Sep 15, 2008 8:53:21 PM)
yes come on
redcountry (Sep 15, 2008 8:53:50 PM)
i wish, i hope to get to CA this winter
Jim_VA (Sep 15, 2008 8:54:17 PM)
he likes baseball
Jim_VA (Sep 15, 2008 8:55:40 PM)
what kind of apples
redcountry (Sep 15, 2008 8:55:42 PM)
i could buy in on a trip to mx again this year but i am going for the ca
redcountry (Sep 15, 2008 8:55:51 PM)
braeburn
Jim_VA (Sep 15, 2008 8:56:06 PM)
ah
Jim_VA (Sep 15, 2008 8:56:47 PM)
church trip?
redcountry (Sep 15, 2008 8:56:52 PM)
it is a tree that steve and i planted 4 springs ago, so this is the second year of actually getting enough to do
redcountry (Sep 15, 2008 8:56:57 PM)
no with work
Jim_VA (Sep 15, 2008 8:57:23 PM)
ah
redcountry (Sep 15, 2008 8:57:44 PM)
customers are welcome to go this time, and i would rather get away from work on vacations
Jim_VA (Sep 15, 2008 8:58:40 PM)
I had 6 stamen winesap trees
redcountry (Sep 15, 2008 8:59:03 PM)
ohh isnt that the little red crisp ones
Jim_VA (Sep 15, 2008 8:59:33 PM)
and 2 granny smith
Jim_VA (Sep 15, 2008 8:59:53 PM)
yes
redcountry (Sep 15, 2008 9:00:17 PM)
wow, that is alot of apples, what did you do, with all of the apples
redcountry (Sep 15, 2008 9:01:08 PM)
the grannys are good for pies and pie filling
Jim_VA (Sep 15, 2008 9:01:16 PM)
they are green
redcountry (Sep 15, 2008 9:01:44 PM)
the grannys, yes
Jim_VA (Sep 15, 2008 9:02:08 PM)
I ate all I wanted
redcountry (Sep 15, 2008 9:04:03 PM)
you know i think dick had said he can remember being in the orchard when they would spray the trees, steve would treat our trees every year, after blossom time on the cherry and after the fruit set on the peaches, i wonder if the pesticide made him sick
Jim_VA (Sep 15, 2008 9:04:15 PM)
I was going to make things when I moved there
redcountry (Sep 15, 2008 9:04:40 PM)
where was that
Jim_VA (Sep 15, 2008 9:05:32 PM)
I did the same
redcountry (Sep 15, 2008 9:06:05 PM)
hum
Jim_VA (Sep 15, 2008 9:08:10 PM)
on the lower Patomac close to the Chesapeake Bay
Jim_VA (Sep 15, 2008 9:09:28 PM)
my boat is still there
redcountry (Sep 15, 2008 9:10:20 PM)
was it going to be your retirment home
dian_na (Sep 15, 2008 9:10:52 PM)
(This user has entered Living with ALS 2)
redcountry (Sep 15, 2008 9:11:09 PM)
hi dian na
dian_na (Sep 15, 2008 9:11:21 PM)
Hi Jim are you the Jim I emailed today?
dian_na (Sep 15, 2008 9:11:30 PM)
hi red country how are you?
Jim_VA (Sep 15, 2008 9:12:04 PM)
it took 25 minutes to get to the bay
redcountry (Sep 15, 2008 9:12:11 PM)
i am fine and you
dian_na (Sep 15, 2008 9:12:27 PM)
doing real good, thank oyu
dian_na (Sep 15, 2008 9:12:32 PM)
oops you
Jim_VA (Sep 15, 2008 9:12:45 PM)
your mom has ALS
dian_na (Sep 15, 2008 9:12:54 PM)
yes she does
redcountry (Sep 15, 2008 9:13:43 PM)
sorry to here that,
Jim_VA (Sep 15, 2008 9:13:46 PM)
yep Dianna
dian_na (Sep 15, 2008 9:14:12 PM)
we're doing ok, not great but ok,
redcountry (Sep 15, 2008 9:14:40 PM)
good, are you home with her
dian_na (Sep 15, 2008 9:14:51 PM)
Jim we go to an ALS clinic is that the same type thing you emailed about?
dian_na (Sep 15, 2008 9:15:23 PM)
yes I am, mom and I lived together before she got ALS, we have an aide during the day
Jim_VA (Sep 15, 2008 9:15:47 PM)
that is good
redcountry (Sep 15, 2008 9:16:23 PM)
yes, my adult children stayed with my husband during the day
dian_na (Sep 15, 2008 9:16:37 PM)
I wish I could get her interested in something, but even before ALS she watched tv a lot
dian_na (Sep 15, 2008 9:17:26 PM)
I have a brother and sister , Jimmy my brother is a truck driver he comes by but my sister isn't involved, I suppose everyone has there own way of greiving
redcountry (Sep 15, 2008 9:17:28 PM)
thats ok
redcountry (Sep 15, 2008 9:17:46 PM)
how old is your mom
dian_na (Sep 15, 2008 9:17:53 PM)
she's 68
Jim_VA (Sep 15, 2008 9:17:55 PM)
that can get boring
Jim_VA (Sep 15, 2008 9:18:39 PM)
I am 66
redcountry (Sep 15, 2008 9:18:46 PM)
yes, it can
dian_na (Sep 15, 2008 9:19:00 PM)
I think watching tv is boring anyway, but she has always done that, yet I can't help but think if I could get her to want to thrive, perhaps she'll feel more .. something
redcountry (Sep 15, 2008 9:19:28 PM)
ask more company to come by
dian_na (Sep 15, 2008 9:19:48 PM)
her friends have all stopped comming they don't know what to say
Jim_VA (Sep 15, 2008 9:19:59 PM)
unless it is football
dian_na (Sep 15, 2008 9:20:04 PM)
she has to write to respond
dian_na (Sep 15, 2008 9:20:17 PM)
lol, football,
redcountry (Sep 15, 2008 9:20:32 PM)
foot ball, you know nebraska has not lost a game yet
dian_na (Sep 15, 2008 9:20:34 PM)
football is good if its a close game and your on pins n needles
Jim_VA (Sep 15, 2008 9:21:02 PM)
I cannot talk either
redcountry (Sep 15, 2008 9:21:27 PM)
we had been married ten years before i figured out that every game no matter who was playing was a good game lol
Jim_VA (Sep 15, 2008 9:22:20 PM)
Julie is a NE fan
dian_na (Sep 15, 2008 9:22:20 PM)
yeah but look at you your finding other resources and thats terrific, my mom use to talk non stop, and I can't imagine her not finding a way as you have
redcountry (Sep 15, 2008 9:22:28 PM)
Steve could not use his hands to write, when he could not talk any longer he started using an eye gaze communication device
dian_na (Sep 15, 2008 9:23:05 PM)
I read ab out eye gaze
Jim_VA (Sep 15, 2008 9:23:47 PM)
she has to want to do it
redcountry (Sep 15, 2008 9:24:00 PM)
your mother cannot talk but having other conversation, even listening in on gossip could interest her
Jim_VA (Sep 15, 2008 9:24:27 PM)
yes
dian_na (Sep 15, 2008 9:24:27 PM)
mom has lost her voice, her legs, she can help transfer, she can walk with braces and the walker about 10 steps, I excercise her legs
Jim_VA (Sep 15, 2008 9:25:16 PM)
that is great
redcountry (Sep 15, 2008 9:25:23 PM)
that is good
dian_na (Sep 15, 2008 9:25:50 PM)
and she breaths shallow although she always did, they are concerned, we have a bi pap she refuses, a VEST she tolerates and they are talking of a cough assist
Jim_VA (Sep 15, 2008 9:25:53 PM)
I am slow typing due to my adaptive equipment.
Jim_VA (Sep 15, 2008 9:26:48 PM)
I have a cough assist
dian_na (Sep 15, 2008 9:26:54 PM)
your doing it, and at some point if mom will I want her to look at your web site, she still won't even read the ALS news letters
redcountry (Sep 15, 2008 9:26:55 PM)
steve used a bipap 24 7
Jim_VA (Sep 15, 2008 9:27:39 PM)
bummer
dian_na (Sep 15, 2008 9:27:42 PM)
24-7 , gzz I'm lucky to get her on it 15 mins
redcountry (Sep 15, 2008 9:28:10 PM)
it was the only way he got enough air
dian_na (Sep 15, 2008 9:28:51 PM)
well I think its difficult, I can't even visualize being told what she's been told and you two, yet I think doing how she is, she's making it more difficult
redcountry (Sep 15, 2008 9:28:51 PM)
but he did not use it until he had to
Jim_VA (Sep 15, 2008 9:29:05 PM)
one of those necessary things
dian_na (Sep 15, 2008 9:29:49 PM)
this is kind of a neat little chat tool they have isn't it
redcountry (Sep 15, 2008 9:30:00 PM)
steve was very stubborn, he would not chat on computer,
Jim_VA (Sep 15, 2008 9:30:05 PM)
does she have a pulmonologist
dian_na (Sep 15, 2008 9:30:25 PM)
no only doctor we have seen is her neurologist
dian_na (Sep 15, 2008 9:30:35 PM)
and a speech doctor
redcountry (Sep 15, 2008 9:30:38 PM)
yes, Jim helped me more than he would ever know
Jim_VA (Sep 15, 2008 9:30:42 PM)
yes
dian_na (Sep 15, 2008 9:31:40 PM)
everything we've done in the past year has been thru the ALS clinic, I guess we should venture out, mom hates changes
redcountry (Sep 15, 2008 9:31:49 PM)
jim has alot of knowledge, and looks into all of the research going on around the world
Jim_VA (Sep 15, 2008 9:31:55 PM)
still trying to get you to play
redcountry (Sep 15, 2008 9:32:04 PM)
lol
Jim_VA (Sep 15, 2008 9:32:12 PM)
lol
dian_na (Sep 15, 2008 9:32:14 PM)
play what? football?
redcountry (Sep 15, 2008 9:32:24 PM)
on a game site
Jim_VA (Sep 15, 2008 9:32:34 PM)
cards
dian_na (Sep 15, 2008 9:32:46 PM)
I play sometimes on some of the sites
redcountry (Sep 15, 2008 9:32:55 PM)
i have been few and far between, being on the computer since steve passed away
dian_na (Sep 15, 2008 9:33:42 PM)
mom will play board games at times
redcountry (Sep 15, 2008 9:34:01 PM)
i used to play alot of backgammon
Jim_VA (Sep 15, 2008 9:34:15 PM)
your mom mom may like to play
Jim_VA (Sep 15, 2008 9:34:28 PM)
ugh
redcountry (Sep 15, 2008 9:34:36 PM)
lol
dian_na (Sep 15, 2008 9:34:43 PM)
I understood
dian_na (Sep 15, 2008 9:34:54 PM)
hehe
Jim_VA (Sep 15, 2008 9:35:36 PM)
my nurse friend plays that
redcountry (Sep 15, 2008 9:35:37 PM)
how long has your mom been dx with als
dian_na (Sep 15, 2008 9:35:55 PM)
before mom got to where she couldn't walk, I talked her into sitting into one of those motorized chairs at k-mart
dian_na (Sep 15, 2008 9:36:30 PM)
she took a plaster wall out back in electronics, then wanted me to walk infornt of her to get her out of there
redcountry (Sep 15, 2008 9:36:37 PM)
i could not talk steve into that, he was that stubborn
redcountry (Sep 15, 2008 9:36:58 PM)
o my, lol
Jim_VA (Sep 15, 2008 9:37:07 PM)
I only use a pulmonologist
dian_na (Sep 15, 2008 9:37:14 PM)
it was too funny, I said heck no I jus saw what you did to that wall, I'll be walking behind you mom
dian_na (Sep 15, 2008 9:37:23 PM)
really Jim?
dian_na (Sep 15, 2008 9:37:40 PM)
that makes sense, because the main concern is lungs
Jim_VA (Sep 15, 2008 9:37:57 PM)
yes
redcountry (Sep 15, 2008 9:38:06 PM)
steves lungs was the last to be effected
dian_na (Sep 15, 2008 9:38:13 PM)
mom has been diagnosed a year next month but she had it for some time before
dian_na (Sep 15, 2008 9:38:41 PM)
yes, but the lungs is what will hurt mom too in the end so if those are in check all is well
dian_na (Sep 15, 2008 9:39:08 PM)
at least from what I have managed to read
redcountry (Sep 15, 2008 9:39:19 PM)
steve was 6-05 to 1-08, first sign was 2=05
dian_na (Sep 15, 2008 9:39:46 PM)
i really know nothing but what I have read
Jim_VA (Sep 15, 2008 9:40:34 PM)
she should have pierodic FVC tests
redcountry (Sep 15, 2008 9:40:36 PM)
i was told to try to stay one step ahead of the disease
dian_na (Sep 15, 2008 9:40:46 PM)
3 years, wow
dian_na (Sep 15, 2008 9:41:11 PM)
I try to but most of the problems I have falls with in my mom
redcountry (Sep 15, 2008 9:41:13 PM)
yes very fast
dian_na (Sep 15, 2008 9:41:37 PM)
as Jim said earlier she has to want to and I don't know ow to make her want
dian_na (Sep 15, 2008 9:42:28 PM)
I told her all about what I read on Jims site and she seemed interested
redcountry (Sep 15, 2008 9:42:41 PM)
try to find a mda clinic in your area, they helped us alot, set up, speech, physical, occupational, and dietcian in one visit
dian_na (Sep 15, 2008 9:42:51 PM)
and I was shocked about gulf war vets, being thatg I am one
Jim_VA (Sep 15, 2008 9:43:02 PM)
Steve was young too
dian_na (Sep 15, 2008 9:43:27 PM)
I'm retired Army spent 22 years there
redcountry (Sep 15, 2008 9:43:45 PM)
gosh i am trying to think of the place in san jose tx
dian_na (Sep 15, 2008 9:43:57 PM)
san antonio
dian_na (Sep 15, 2008 9:43:59 PM)
?
redcountry (Sep 15, 2008 9:44:07 PM)
yes that is it
dian_na (Sep 15, 2008 9:44:18 PM)
Fort Sam Houston
redcountry (Sep 15, 2008 9:44:25 PM)
a huge number of people all dx
redcountry (Sep 15, 2008 9:44:32 PM)
no
dian_na (Sep 15, 2008 9:44:48 PM)
all gulf war?
redcountry (Sep 15, 2008 9:44:59 PM)
can you remember that jim,
redcountry (Sep 15, 2008 9:45:42 PM)
no, it was an air force base and alot of people got sick with als
Jim_VA (Sep 15, 2008 9:46:02 PM)
I don't know what they are going to do with these vets
redcountry (Sep 15, 2008 9:46:29 PM)
my memory is bad
dian_na (Sep 15, 2008 9:46:36 PM)
maybe Lackland or Kelly
redcountry (Sep 15, 2008 9:46:43 PM)
yes it was kelly
Jim_VA (Sep 15, 2008 9:46:57 PM)
that was am AFB
redcountry (Sep 15, 2008 9:47:16 PM)
search it, it is unbelievable
dian_na (Sep 15, 2008 9:47:16 PM)
mom took lovastatin, did you read the studoes on those?
dian_na (Sep 15, 2008 9:47:32 PM)
oops studies
redcountry (Sep 15, 2008 9:47:59 PM)
steve was perfect health never had any problems
Jim_VA (Sep 15, 2008 9:48:28 PM)
yes I never had any
redcountry (Sep 15, 2008 9:49:45 PM)
what is loastatin
Jim_VA (Sep 15, 2008 9:49:50 PM)
my son is on active duty now
redcountry (Sep 15, 2008 9:49:54 PM)
oops lovastatin
dian_na (Sep 15, 2008 9:50:20 PM)
its a cholestrol reducing type drug
dian_na (Sep 15, 2008 9:50:44 PM)
there are a number of peole with ALS who were taking statins
dian_na (Sep 15, 2008 9:50:51 PM)
people
redcountry (Sep 15, 2008 9:50:54 PM)
i see
dian_na (Sep 15, 2008 9:51:35 PM)
hmm i just went in to hook mom up to the VEST machine and said, dang my leg hurts and she laughed
Jim_VA (Sep 15, 2008 9:51:37 PM)
are you in texas
dian_na (Sep 15, 2008 9:52:22 PM)
lol that hyper reflex thing sometimes, glad she laughs a lot, she has cried at time
dian_na (Sep 15, 2008 9:52:30 PM)
i'm in st louis, missouri
redcountry (Sep 15, 2008 9:52:41 PM)
texas has the highest population of als, well last i knew any way
Jim_VA (Sep 15, 2008 9:52:58 PM)
ah
redcountry (Sep 15, 2008 9:53:06 PM)
i am nebraska
dian_na (Sep 15, 2008 9:53:33 PM)
isn't texas one the largest toxic waste places?
redcountry (Sep 15, 2008 9:53:38 PM)
are you in the keith worthington chapter of the alsa
dian_na (Sep 15, 2008 9:54:09 PM)
lol i haven't a clue, its the st louis chapter is all I know it by
redcountry (Sep 15, 2008 9:54:45 PM)
we had been in the keith worhington, it is in kc mo
Jim_VA (Sep 15, 2008 9:55:50 PM)
there is a guy just south of St Louis
redcountry (Sep 15, 2008 9:55:55 PM)
but they had a group meeting in omaha
redcountry (Sep 15, 2008 9:56:06 PM)
is that bear
Jim_VA (Sep 15, 2008 9:56:46 PM)
you know Jeff - yes
redcountry (Sep 15, 2008 9:57:09 PM)
he had been on only a couple of times when i was
dian_na (Sep 15, 2008 9:58:17 PM)
I don't know anyine else here with it, you all are first one's I've communicated with or assocciated with ALS
Jim_VA (Sep 15, 2008 9:58:20 PM)
he had 3 children after dx
redcountry (Sep 15, 2008 9:58:21 PM)
i need to get going, you two have a pleasant evening, and it was nice meeting you dianna
redcountry (Sep 15, 2008 9:58:56 PM)
jim i will think of you when i am canning them darn apples
redcountry (Sep 15, 2008 9:58:57 PM)
lol
Jim_VA (Sep 15, 2008 9:59:15 PM)
take care lol
redcountry (Sep 15, 2008 9:59:32 PM)
good luck with mom
dian_na (Sep 15, 2008 9:59:46 PM)
g'nite
redcountry (Sep 15, 2008 9:59:48 PM)
(This user has left DigiChat)
dian_na (Sep 15, 2008 10:00:10 PM)
oops hope she saw that I had to go into mom for a second
dian_na (Sep 15, 2008 10:00:27 PM)
I'm sure glad I found your site Jim,
dian_na (Sep 15, 2008 10:01:03 PM)
theres times as I know your aware you feel like your on an island and the tide is a comming
Jim_VA (Sep 15, 2008 10:01:24 PM)
Penny got back to you today
dian_na (Sep 15, 2008 10:01:36 PM)
oh yeah with in 2 hours
Jim_VA (Sep 15, 2008 10:01:42 PM)
yes]
Jim_VA (Sep 15, 2008 10:02:19 PM)
that is great
dian_na (Sep 15, 2008 10:02:31 PM)
now that I have this chat, I promise i won't be a stranger
Jim_VA (Sep 15, 2008 10:03:00 PM)
good
dian_na (Sep 15, 2008 10:03:02 PM)
sometimes it helps just to talk to others who are familar with your turf
Jim_VA (Sep 15, 2008 10:03:27 PM)
yes
dian_na (Sep 15, 2008 10:04:14 PM)
I need to finish mom's treatments so I can go to bed, I get up at 5:15 am to get all done then go to work
Jim_VA (Sep 15, 2008 10:05:25 PM)
It was very nice chatting with you. Take care and do come back soon! bye
dian_na (Sep 15, 2008 10:05:30 PM)
perhaps at sometime I'll play you a game of those cards too,, I better go, truly was terrific to chat with you and I'll see you wendesday
dian_na (Sep 15, 2008 10:05:39 PM)
g'nite
Jim_VA (Sep 15, 2008 10:05:50 PM)
nite
Jim_VA (Sep 15, 2008 10:06:17 PM)
(This user has left DigiChat)
dian_na (Sep 15, 2008 10:06:22 PM)
(This user has left DigiChat)