12.26.2005
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

dannyd -- {welcome dannyd}
db273 -- {welcome db273}
db273 -- hi danny
dannyd -- Hi Dick How's it going?
db273 -- it is going great just settleing down some
db273 -- how's it with you
dannyd -- It's going good. Although allergies are kicking my butt
dannyd -- Never had such a problem before
db273 -- high price to pay for warm weather
dannyd -- The past 2 weeks have been unbelievable
db273 -- good or bad good i am thinking
db273 -- glad you are warm
dannyd -- It's 72 here
dannyd -- I miss the cold weather sometimes
db273 -- 36 here cloudy
dannyd -- But my muscles sure don't
dannyd -- I get so stiff in the cold weather and end up walking like a robot
db273 -- i did some when i left wis but now talk to mom and am glad i am not there anymore
db273 -- i say my frankenstein walk
dannyd -- I didn't know you were from Wisconsin
db273 -- yes met wife at ft knox and stayed here
libby_j -- {welcome libby_j}
db273 -- hi libby
libby_j -- Hello, wasnt sure youd be here today
db273 -- how are you doing libby
db273 -- all tuckered out and resting in recliner
libby_j -- Pressing on, still bothered with my breathing...Yes in the reclyiner !
db273 -- hang in there
libby_j -- Yes, my brother arrives tomorrow which is something to lok forward to
db273 -- how long since you seen him last
libby_j -- WE are lucky he gets up every few months and he will be here til New Year...The children have been great playing their hearts out and cant wait fir him to get here to beat him on their playstation
db273 -- i'll bet they took my chips yesterday playing texas holdem
libby_j -- They make it look so easy, I am all thumbs at even the simplest game!
db273 -- me too this keyboard is hard enough
libby_j -- Tell me about it, laptops are the worst for me
db273 -- i got a wireless keyboard for mine and it works a lot better
libby_j -- i hope to get a decent speech recogbition progrsm but my speech quality varies
libby_j -- I have one of those two and it does improve things a bit
db273 -- get etriloquist
libby_j -- I wondered if Jen would pop in today..havent hearrd for a few days.
db273 -- sorry you mean for talking and it types
libby_j -- I will make a note of that
db273 -- haven't seen her lately but her kids are with her i think
libby_j -- Yes, that wil be it!
db273 -- etril you type and it talks
libby_j -- I will check it out
db273 -- does the cold weather bother you libby
libby_j -- Yes makes me very stiff just as the heat makes me extremely weak
db273 -- oh heat is good for me
libby_j -- Perfect is betwen 17-22'c!
db273 -- can't compute ours is 75 degrees
libby_j -- That sounds right for me!
db273 -- good my wife can't stand hot weather
libby_j -- Im sorry db but I am getting a bit tired now its 8.20 here , but its been apleasure as alawys stopping by. Take care and hope to see you again soon.
libby_j -- sorry 9.20
db273 -- ok libby nice to talk to you too and take care
libby_j -- Byebye
libby_j -- {goodbye libby_j}
db273 -- thinking
dannyd -- wonder where everyone is?
db273 -- busy with family or wore out
db273 -- were you here yesterday
dannyd -- I wasn't here
db273 -- me either
dannyd -- I checked the transcript and only libby signed in
db273 -- shame
db273 -- i think she is haveing breathing problems and wants to talk to jen about hers
agreys -- {welcome agreys}
agreys -- Hi, guys
db273 -- hi susan
db273 -- san antonio rose
agreys -- Did you both have nice Xmas?
agreys -- =)
db273 -- yes we did here and you
agreys -- Mine was stupendous
dannyd -- It was nice the kids had a good day
dannyd -- what did you do
db273 -- great tell us all about it and did you get what you wanted
agreys -- That's nice.
agreys -- I got adopted!
agreys -- I feel like the last dog at the pound.
db273 -- paul newman
dannyd -- by who
agreys -- Some wonderful friends who are really angels.
db273 -- good for you susan
agreys -- I've been worried about my progression, facing a home.
agreys -- Worried about my dog, and what would happen to her...
db273 -- can understand that
agreys -- Best Christmas I've ever had.
dannyd -- did you work out a schedule for them to help you?
agreys -- They're moving me in with them.
agreys -- They call ME their angel.
agreys -- Still brings tears to my eyes.
db273 -- you are too your smile will light up their house
agreys -- Dick, you are so kind!
db273 -- just honest
agreys -- My dog loves them, and they have a daughter so she'll have her own kid.
db273 -- now if anna nicole smith would adopt me
agreys -- Your wife would brain you if she did!
db273 -- i guess you are right also can think of a million or so gals better
dannyd -- Do you have to sell your house?
agreys -- In fact, I think she's sneaking up behind you with a frying pan.
db273 -- lucky i don't have a brain
agreys -- Yes, but that was always in the cards.
agreys -- This way, the house will sell in the spring; best time.
db273 -- glad you have a good deal going for you
agreys -- Oh, me too!
agreys -- Things were not looking good a week ago.
dannyd -- That's soooooo great
db273 -- pat gets down in the dumps sometimes and wants to go to home so kids don't have to take care of her glad i don't have that kind of money
agreys -- Pat shouldn't worry; but that's easy for me to say now.
db273 -- she hates being a burden worse than i do
agreys -- Danny, I hear you have an aloe vera plant.
agreys -- Tell Pat you have a line on a blonde caregiver. ;-)
db273 -- hey my ears ring enough
db273 -- and his name is fritz
dannyd -- Yes although I missed him
agreys -- What happened to Sven?
agreys -- He mentioned that y'all didn't meet.
agreys -- Dick, I thought your blonde was Sven.
db273 -- ok you are quick
db273 -- fun being funny with you
agreys -- Razor wit here.
db273 -- i was thinking one of the german gods
agreys -- A smile a day keeps the doctors at bay.
db273 -- i hope so
agreys -- I was thinking Danish.
db273 -- better choice than mine
agreys -- Me too. I'll do anything to keep themat bay. Even adopt a crocodile
samstl -- {welcome samstl}
agreys -- Hey, Sam!
db273 -- hi sam
agreys -- How are you?
samstl -- doing ok, how about you? are you felling any better?
agreys -- Much better, thank you.
agreys -- Did you have a nice holiday?
samstl -- that's great. i was really concerned.
agreys -- That's very kind of you. =)
agreys -- Hey, guys. I got my ERICA system.
samstl -- my holiday was good. i played at three different churches on xmas. saw more catholics than the pope. not bad for a nice jewish boy from the midwest.
db273 -- wonderful
agreys -- So glad you are still playing! I'll bet you enjoyed that.
db273 -- what do you play
agreys -- And how many play with you?
samstl -- i'm a newboy. what's ERICA. and i play the french horn
samstl -- and i let anyone play with me that wants to
db273 -- thank you sam
samstl -- i do play well with the other children
agreys -- ERICA is Eye Response technology so I can type with my eyes.
agreys -- I used to play the piano and miss it very much.
db273 -- can i hum
samstl -- obviously very fast. i will discuss this with you on a later e-mail
agreys -- Can you NOT hame, Dick? ha ha HA
samstl -- i mean the ERICA not the humming
agreys -- hum...sorry
agreys -- Who's got the cotton?
db273 -- i am a humming bird
samstl -- this is getting out of hand in a hurry. i better tone it down
agreys -- Dick, dear, you're a humming frog.
db273 -- quiet from now on
agreys -- awww...I was just ribbing you
samstl -- not again with the frog
db273 -- i know but want sam to enjoy too
agreys -- Well, you've got to kiss a lot before you find your prince, y'know.
samstl -- this is just way too much pun for me.
gjlscals -- {welcome gjlscals}
agreys -- Hey, Gayle!
db273 -- hi gayle
agreys -- How're you and George?
samstl -- hey, what's up?
agreys -- Sam, pick up the beat.
gjlscals -- Hi Susan! Sorry to be late - talking with George's aide and forgot the time.
agreys -- Glad you popped in. Always good to see you.
gjlscals -- George is doing okay although he has developed a pressure sore on the bridge of his nose from wearing his full face mask all the time.
agreys -- Do you want those live-in docs?
gjlscals -- Sam - George could join you - he does a great job of tooting on his full face mask when the seal isn'g quite right!
agreys -- Oh, dab Neosporin oni it. Then cover with gauze and paper tape. Change and air.
samstl -- just make sure he stays in tune. can't tolerate it otherwise.
gjlscals -- Thanks Susan, that is what the hospice nurse recommended as well.
agreys -- Yeah, those face masks can toot flat.
samstl -- nothing else seems to work, but i still have as ear.
gjlscals -- He will have to work on his scales - he isn't too in tune right now - more practice needed!
agreys -- We need a drummer. Danny?
samstl -- this is going from bad to worse.
dannyd -- I can't carry a tune in a bag
agreys -- We're trying to keep up, Sam! Always a critic.
db273 -- me either
gjlscals -- Well as the drummer you don't have to - just be able to bang in time to the tooting.
samstl -- that's why they pay me the big bucks
agreys -- Hum a few bars and Pat will brain you if you're off-key.
db273 -- lol susan you are mid season form
agreys -- May I say what a delightful ensemb we all are?
gjlscals -- Would that make Pat the drummer or the percussionist?
db273 -- mad wife
gjlscals -- And all dressed in various shades of chiffon!
agreys -- Definitely see stars with Pat.
samstl -- a percussionist is someone who likes to hang around with musicians
gjlscals -- Then she would be the astronomer for the group.
db273 -- when i smile too much she gets hyper
agreys -- Hee hee!
agreys -- She must be dancing off the ceiling about now.
samstl -- you know there is a whole book of jewish wives jokes that starts about now
gjlscals -- Ala Fred Astaire I am sure.
db273 -- filing divorce papers as i smile
agreys -- Start 'em up, Sam.
samstl -- not with my wife in the room lokking over my shoulder. have to wait for a later date.
db273 -- take my wife...........please
gjlscals -- On a more serious note, I went to tour an adult family home to see if it would work for George.
agreys -- Pat would never leave you...as long as she has Sven.
samstl -- kno't know why i'm having trouble typing today. henny
agreys -- And how did that go, Gayle?
gjlscals -- It went well. It is run by a Russian couple and has a very homelike feel. They even have cats!!
agreys -- How many people do they care for?
gjlscals -- Sam - too much Christmas egg nog no doubt!
db273 -- can i ask how much
agreys -- And how did you find it?
gjlscals -- They have room for 6 patients. George would have a private room and the fee covers cable TV as well as all the other services. I would just have to provide his clothes, a dresser and the TV.
samstl -- when you say the other services, what does that mean?
gjlscals -- The hospice social worker used her contacts to find this location for me. It is about 10 minutes from our condo so very easy to visit every day.
agreys -- Sounds very nice. Do they know ALS?
gjlscals -- Physical therapy, medication, showers, food and snacks if he was still eating, etc.
gjlscals -- Yes, they are familiar with ALS. That was one of the requirements when I started looking for a home.
gjlscals -- The cost will be between 4000 & 5000/month depending on the services he requires.
db273 -- sounds great gayle
agreys -- Not at all bad. Is it doable for you?
gjlscals -- I have some money set aside that I was going to use to remodel the guest bath that I can use for this instead and I know my brother will step in to help out as well.
dannyd -- Does Medicare cover any?
gjlscals -- It is not the right solution for everyone but it is the best for us. It gives George the 24 hour care he needs and allows me to continue working and just be wife and friend (and not the Wicked Witch of the West!)
gjlscals -- I don't think so and given the likely time frame for George's survival it is not going to be cost-effective to get him qualified for Medicaid (too many darn assets!!)
agreys -- If it is the best for you and George, that's all that matters.
gjlscals -- Thanks Susan, I knew I could count on you for support.
db273 -- yes gayle do what's best for both of you
agreys -- Isn't it ludicrous if you've worked your whole life you can't get care?
samstl -- gayle, tell me where you live.
gjlscals -- I think it sucks!! Definitely something that needs to be changed in our health care system - you either have to be poverty-stricken or rich.
db273 -- you are right there gayle
agreys -- And here I am. both feet planted firmly in middle class.
gjlscals -- Sam, George and I live outside of Seattle, WA where it is currently sunny but windy (a nice break from the rain over the last couple of days)
samstl -- just thank the republicans.
agreys -- Why stop there? Thank all the politicians.
gjlscals -- Susan - so are ours. Oh well, you deal with the hand you were dealt in the great cosmic poker game and you can't even discard any cards!
agreys -- Pair of deuces here.
samstl -- you're right. it's been going on for years in this country.
agreys -- And the Boomers will be the straw tht kills the camel.
samstl -- that's me!
gjlscals -- Or causes the major change that needs to take place.
gjlscals -- I think Sam has a joker in his poker hand!
agreys -- Here, here!
agreys -- Peeking over Sam's shoulder...
samstl -- hey listen, short of a civil war, our children won't be around to see any change in this system.
gjlscals -- Sorry to chat and run but George's aide is getting him out of bed so I can change the sheets. See you guys next week!
agreys -- Why do you say that, Sam?
agreys -- Take care, Gayle!
db273 -- bye gayle take care
samstl -- too much money making the laws for too many people.
agreys -- Thanks for sharing the good news.
gjlscals -- {goodbye gjlscals}
agreys -- I'd like to see health care reform starting at the price of pills.
db273 -- now i feel lucky we paid 1400 a month for pat's dad with alteimers 3 years ago
agreys -- That would be a weekend nowadays, Dick.
db273 -- crappy
agreys -- Here, they won't even quote you a monthly rate.
samstl -- you cannot get me started on this. i hate it. just follow the money and you'll see why health care won't be reformed anytime soon
agreys -- Biggest lobbying group in Washington are the pill pushers.
db273 -- we found this gal in the catholic record a great gal
dannyd -- insurance companies
agreys -- Which gal, Dick?
db273 -- the one who took care of brownie
agreys -- Ins. cos. have nothing on Medicare, imho.
agreys -- Pat's dad?
db273 -- so long people see you all later......yes susan
samstl -- guy's i've got to go. wife's calling for dinner. see you next week.
agreys -- Take care, Dick!
samstl -- {goodbye samstl}
db273 -- {goodbye db273}
dannyd -- {goodbye dannyd}
agreys -- Chat's ending at 15 past the hour. Join us next year for expanded chat schedule. See the calendar.
agreys -- Happy New Year!