02.13.2006
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

libby_j -- {welcome libby_j}
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- hello libby
joybell40 -- {welcome joybell40}
joybell40 -- hello
blueeyes1 -- hey joy
blueeyes1 -- glad you joined us..its jen
joybell40 -- ty jen
joybell40 -- do many come here
blueeyes1 -- yes they comein later
joybell40 -- ok
blueeyes1 -- there are a lot that come in
joybell40 -- ok
blueeyes1 -- I don't know wehre ragingbear is
joybell40 -- oh dont know them
blueeyes1 -- usually there is a whwle bunch don't know what happened to them hmm maybe another half hour...
joybell40 -- oh ok
blueeyes1 -- I emailed some of them to see i they are coming in
joybell40 -- cool
blueeyes1 -- I swewar they wiwll be here today...normally here already...
joybell40 -- no prob
blueeyes1 -- this is a great place for everything happy and sad
blueeyes1 -- are you still here joy
libby_j -- hi joy and blue
blueeyes1 -- not sure if joy is still here
libby_j -- it might still be early for evryone
blueeyes1 -- that's what I was thinking
blueeyes1 -- I thought it was 2pm central time...are you doing ok now?
libby_j -- Im having a sip of cool coke
libby_j -- You know i still have a cough
libby_j -- its taking a while to let go
blueeyes1 -- you are strong
libby_j -- yes most of the time
blueeyes1 -- no all of the time and you're son is still worrying about you :)
libby_j -- He just called me said he threw up again coughing and he feels so bad
libby_j -- i said I would go up but he said no..he knows its hard bless him
libby_j -- {welcome libby_j}
rayden911 -- {welcome rayden911}
flossy -- {welcome flossy}
flossy -- hi
db273 -- {welcome db273}
db273 -- hi all
flossy -- hi
blueeyes1 -- hi dick and flossy
libby_j -- hello richard
flossy -- hi blue
libby_j -- and flossy
kurt-wi -- {welcome kurt-wi}
kurt-wi -- hi friends
db273 -- how are you all today i am good
kurt-wi -- ok here
libby_j -- Stressed out but OK
blueeyes1 -- hey kurt
db273 -- saw son was sick libby
libby_j -- yes, pneumonia in hospital rushed in this morning
dannyd -- {welcome dannyd}
db273 -- sorry
db273 -- hi danny
dannyd -- Hi everybody sorry I'm late
blueeyes1 -- hi danny
dannyd -- Was discussing my upcoming home renovations
blueeyes1 -- whatcha doing?
dannyd -- Have to move the master bedroom from upstairs
kurt-wi -- nut'n'honey
db273 -- lol
dannyd -- Then we're going to build a new master bath off the back of the house
dannyd -- Trying to be ahead of the curve
db273 -- good danny
dannyd -- stairs are getting harder more coming down than going up
libby_j -- wiill say goodnight take care all
kurt-wi -- when starting dan?
dannyd -- good night libby
kurt-wi -- good night libby
dannyd -- probably within the next couple of weeks
db273 -- bye libby and say a prayer for your son
libby_j -- thank you
dannyd -- thankfully I have family that can do all the work
libby_j -- {goodbye libby_j}
dannyd -- I see we have a couple of new names here today
blueeyes1 -- LOL Kurt
blueeyes1 -- joy was here earlier but I think we were too early
kurt-wi -- my reputation preceeds me ... lol
blueeyes1 -- danny we're trying to think if moving and updating house would be better or if updating and making this house more accessible..stairs are killing me going up more than down
db273 -- is the room open now that you are here kurt
blueeyes1 -- getting power chair have tri level house and don't know how we're going to get the chair up and out
kurt-wi -- gosh ... i hope so
dannyd -- can you build ramps? or are the too many stairs
blueeyes1 -- 7 up and 7 down...5 out of the laundry room to the garage and 2 stairs into the front of the house
dannyd -- that's too many for ramps
kurt-wi -- house would be all ramps
blueeyes1 -- well I don't want to get stuck on one level either
kurt-wi -- like a roller coaster
dannyd -- kinda like a mini rollercoaster
blueeyes1 -- maybe that would be fun and put some smoke off of it LOL
kurt-wi -- lol ... dan
kurt-wi -- hey, no smoking
dannyd -- limits your options Jen
blueeyes1 -- that's ok I told the doc I'm going to add nitro..he's like your goofy
kurt-wi -- lol
blueeyes1 -- another question, doc says use for long distances or whwen your tired...am I suppposed to trail along the chair on a leash and then sit in it when I'm ready..I don't understand
dannyd -- maybe just use it towards the end of the day, after you have been up and waking for most of the day
kurt-wi -- beats hubby on a leash
blueeyes1 -- do any of you have any suggestions about how to go about getting a ranch? Are there any grants or stuff? Sorry all this is coming up and the ranches I looked into are more expensive than what we have
flossy -- {welcome flossy}
blueeyes1 -- LOL Kurt I told him the other day I was going to put my cane up his butt and there were women laughing at us..I didn't mean to embarrass him
blueeyes1 -- hi flossy
flossy -- hi blue
kurt-wi -- hi flosse
flossy -- hi kurt
catsman -- {welcome catsman}
db273 -- hi brian
catsman -- Dick, how ya doin'?
kurt-wi -- hi Brian
db273 -- i am good and you still breathing
catsman -- I still am...
db273 -- good
catsman -- Kurt, you get any snow?
blueeyes1 -- hi brian
kurt-wi -- new big snow storm do here thursday
dannyd -- Briannnnnnnnnnn
catsman -- Dannnnnnyyyyy!!!!!
kurt-wi -- we got 1" saturday
catsman -- could use some snow or rain or anything wet
blueeyes1 -- a couple inches here
flossy -- got snow saturday also
gjlscals -- {welcome gjlscals}
gjlscals -- Hi All - how is everyone today? Sounds like some of you got some snow out of that storm over the weekend.
catsman -- howdy
blueeyes1 -- it came down hard at first and then now we have a dusting on the ground
dannyd -- Snow???? What's snow
gjlscals -- I think it is something white maybe that you have to shovel but I'm not sure...
blueeyes1 -- so does anyone know of grants that we can get to update our houses?
kurt-wi -- not heard of any
catsman -- thot that was BS cuz I've shoveled that
gjlscals -- I haven't either but you might try doing a Google and see what you come up with.
dannyd -- Check with Department of Rehabilitative Services
dannyd -- They would be a state agency
gjlscals -- You could also try checking with your local Builders' Association and see if they have anything they do.
catsman -- maybe we could all go on game shows & then pool our winnings?
blueeyes1 -- ok I will look into that that's a good idea...yeah deal or no deal
flossy -- {goodbye flossy}
gjlscals -- Or keep trying to win the Lottery and pool those winnings???
blueeyes1 -- yeah that's a good idea too
kurt-wi -- powerball will be 300 million wensday
catsman -- I'm not as lucky as I am smart, so Lottery is not a good gamble for me
catsman -- hmmmmmmm, 300 mill could help a lot of people
gjlscals -- Well neither am I but at $300 million I figure it is worth a shot - someone has to win it.
dannyd -- I have a better chance of getting hit by lightning
catsman -- mights as well be you, huh?
gjlscals -- Perhaps we could get Jeff to buy tickets - he won the Permobile chair so maybe he is luckier than the rest of us.
catsman -- he'd be happy to help, wouldn't he?
blueeyes1 -- I just don't want to be stuck to one part of the house
catsman -- If I win I'll help Blue get her ranch
gjlscals -- I don't blame you about being stuck - that is why George and I sold our tri-level and moved to a one level condo.
catsman -- heck, we'll all ust move into one huge house & get all the help we need
blueeyes1 -- my mind is racing for everything that we have to do and how are we going to do it I wstill don't have my approval of social security
catsman -- I feel your pain, I'm still tryin to get mine as well
blueeyes1 -- well the state rep finally got the district manager of our local ss office involved and they sent all the new information with it and hopefully they wil give me a quicker hearing date than 571 days
gjlscals -- I'm not sure why it is taking you guys so long to get your social security. Just a difference in what the regional and local offices know I guess.
blueeyes1 -- brb
gjlscals -- 571 days!!!! That is almost 2 years - yikes!!! I'm certainly glad it didn't take that long to get George qualified. I just had to wait until he was officially retired before I could apply that was the only hitch.
blueeyes1 -- bbl hubby just said he's taki
blueeyes1 -- to dinner
kurt-wi -- when i got my dx i told my doc i wanted a second opinion so hi told me 'you're ugly too'
blueeyes1 -- LOL that's funny....see you guys later..thankx for all of your help
catsman -- I hope it don't take me 571 days I'll get awfully hungry
blueeyes1 -- {goodbye blueeyes1}
kurt-wi -- bye blue
catsman -- bye blue
catsman -- old joke for old people
kurt-wi -- yup
catsman -- I dint ask for a second opinion just for that reason
kurt-wi -- when dx cat?
kurt-wi -- my dx 4/99
dannyd -- kurt r u on a vent
kurt-wi -- no bipap 24/7
dannyd -- do you do the distributed folding program
rayden911 -- {goodbye rayden911}
kurt-wi -- yes, i have a team 'ALS attack squad'
kurt-wi -- team 1097
dannyd -- I thought so. I'm part of the team
kurt-wi -- great Dan!!
dannyd -- it's pretty hard to amass points
catsman -- What is this team?
catsman -- dx 05/05
dannyd -- You can go to http://folding.stanford.edu/download.html and sign up
dannyd -- Basically it has your computer use it's processor power that is not being used and folds proteins
dannyd -- it's helping scientists get a better understanding of what happens when protein folding goes awry in diseases like ALS
kurt-wi -- misfolded proteins maybe causing ALS and there billions of ways of putting them together wrong
catsman -- doesn't your computer have to be on 24/7
dannyd -- yes
dannyd -- but leaving it on is a minimal expense
kurt-wi -- my 2 puters have been on 24/7 for 7yrs
kurt-wi -- and all my relatives
donml -- {welcome donml}
dannyd -- The program also has a screen saver that you can set to go on after however many minutes
gjlscals -- Sounds interesting - I might see about signing up. Even though a break through won't help George at this point, I am willing to do what I can to help find one so no one else has to go through this disease.
catsman -- unless you're on dial up like we are
catsman -- welcome Don
donml -- thank you
bill-ma -- {welcome bill-ma}
kurt-wi -- cat, folding will work till you connect, then call in if needed, usually every few days
dannyd -- you don't need to stay connected to the internet
kurt-wi -- hay willie!!!
catsman -- how do they use your processor?
bill-ma -- hello all
donml -- what other org. have you all found helpful?
dannyd -- only needs to connect to download a protein "packet" and then when it's done to send results
bill-ma -- hello Kurt
catsman -- cool
dannyd -- Hi Bill and Don
donml -- hi
dannyd -- aside from MDA and ALSA?
bill-ma -- hello Danny
donml -- how have you found alsa?
catsman -- nearest ALSA to me is 350 miles away?
donml -- what abut ALS of UNY, outside of Syracuse?
dannyd -- They are not as much of a presence here in Austin as their nearest office is in San Antonio which is 100 miles south
kurt-wi -- the local ALS clinic is ALSA
dannyd -- You have the MDA ALS center at SUNY Upstate Medical center in Syracuse
bill-ma -- I am in the Boston area, and both ALSA and MDA have been helpful, especially ALSA's lending closet.
dannyd -- that's a good clinic
donml -- i have found the same in syr. the local ALSA is wonderful, even have a respite plan
dannyd -- Boston has Mass General and Dr. Brown
bill-ma -- yes. My doctor is in doctor Brown's group.
dannyd -- There is also a clinic in Worchester
dannyd -- I did a blood study for Dr. Brown's group
bill-ma -- isn't the Worchester clinic associated with the University of Massachusetts?
dannyd -- yes
samstl -- {welcome samstl}
dannyd -- anytime you get to go to one of the big MDA funded clinics I would
bill-ma -- hello Sam
gjlscals -- Danny - I don't see Susan around - is she okay??
samstl -- hello, everybody
dannyd -- Brian and I see Dr. Appel in Houston and he is one of the very best
dannyd -- I haven't heard from her
samstl -- i got a hi-sign from her earlier last week. she is having her usual problems with hospice.
dannyd -- Last I heard she was struggling keeping her head up and getting used to I think the ERICA system
gjlscals -- Oh just wonderful - as though dealing with this disease isn't enough of a headache...
donml -- what is ERICA system?
gjlscals -- I will drop her an email later today just to be sure all is well.
bill-ma -- what is the ERICA system?
samstl -- it's getting very difficult for her to communicate as she has to do everything three times.
dannyd -- It's an eyegaze system to help communicate
donml -- thank you
samstl -- i'm glad i'm not the only one who misses her. she's my rock.
dannyd -- you look at the letters on a screen to form words and the computer speaks them for you
bill-ma -- thanks
dwq272- -- {welcome dwq272-}
dannyd -- It's the same system that James Woods used in the ER episode a couple of weeks ago
kurt-wi -- hi Dave
gjlscals -- She is my rock as well. Why does she have to do everything 3 times??
dannyd -- Hi Dave
dwq272- -- hey Kurt
bill-ma -- hello Dave
samstl -- it has to do with not being understood by her hospice caregiver, who evidently doesn't care enough.
catsman -- She was here last week
gjlscals -- Well that is fine kettle of fish. I wish I was closer so I could help her out. Are her friends doing anything to help straighten out Hospice?
db273 -- supper time bye all take care
db273 -- {goodbye db273}
dannyd -- see ya Dick
bill-ma -- goodbye DB
catsman -- bye Dick, see ya Wednesday
kurt-wi -- bye Dick
samstl -- i think her friends help as much as they can, and she speaks very highly of them. one of the great frustrations of this thing is not being able to help. i've only met her through e-mails and chat rooms, but i don't think i'm any closer to any of my family as i am to her.
gjlscals -- Well I need to get back to work. See you all next Monday.
donml -- {goodbye donml}
gjlscals -- {goodbye gjlscals}
ragingbear -- {welcome ragingbear}
dannyd -- Hey Jeff
bill-ma -- hello raging
kurt-wi -- is this the same Susan as the one in Chatzy?
kurt-wi -- hey Jeff
samstl -- by the way, is anyone in the CO-Q10 study. hey ragin'. loved your article. you can read mine next month.
catsman -- Jeff, how's life?
catsman -- not in the CO-Q-10 but am in the minocycline trial
ragingbear -- Hi everyone sorry I am late I just totally lost track of time working on the new websites
catsman -- you've got a busy life
dannyd -- I don't qualify for either. Bummer
samstl -- what's minocycline
catsman -- it's an antibiotic
dannyd -- an antibiotic that has shown neuroprotective properties
ragingbear -- sam thanks I liked your interview on KSDK!
dwq272- -- I think Kurt's the only one here I know. I was Dx86 and vent dependent since 93
catsman -- I take 400mg daily
kurt-wi -- taking 1200 mg of co-q10 for 5yrs
dannyd -- I was Dx'd 12/2000
samstl -- how long have you been in it? does it show any promise?
ragingbear -- Yes it is Brian
catsman -- I'm Brian, dx 5/05 Texas
samstl -- something happened to my screen. might need to sign off and on again.
catsman -- since uly 05 & I "think" I may show some improvement but uncertain
bill-ma -- I have been taking 300 mg of CoQ10 for about a year.
samstl -- oops, o.k. now.
ragingbear -- sam where do you live in St. Louis?
ragingbear -- I am in Ellisville
catsman -- Does it help, bill
samstl -- in creve couer, near 270-ladue
bill-ma -- who knows. I take vitamin E and vitamin C, also.
ragingbear -- that's not too far away from me
catsman -- had to stop my E & C cuz they conflected with my coumadin
bill-ma -- like the vitamins,CoQ10doesn't hurt, and it may help.
samstl -- the new study has you taking either 2700mg---1800mg---or placebo
kurt-wi -- wow
dannyd -- Wish I could afford to take high dose CoQ10
samstl -- yeah, we're close. hope to see you at one of the meetings soon. should be going to one tomorrow.
ragingbear -- coenzyme Q10 definitely helps
samstl -- don't know if it works or not. but like all of us, i'm willing to try anything.
dwq272- -- I have never taken meds, vitamins, supplements or anything. My progression seems to have stopped around the time I vented
dannyd -- I'm taking 50mg 2x a day
catsman -- I can't wait until I can start it again
bill-ma -- Danny, of what?
dannyd -- CoQ10
ragingbear -- I don't go to many meetings because we have young children so we're pretty busy
dannyd -- It's really expensive
bill-ma -- just making sure. There were two or three things floating around in our conversations
catsman -- I'll pay it
kurt-wi -- i'm taking lots of antioxidantants, but celebrex seems to help the most
bill-ma -- yes it is expensive.
dannyd -- 30 - 100mg softgels are like $14.00
catsman -- celebrex does what?
dannyd -- can you imagine that everyday
ragingbear -- I take 200mg once a day and I get it from Puritan's Pride
samstl -- it seems if it works, shouldn't they cover it on medicare?
kurt-wi -- cox-2 inhibitor
dannyd -- celebrex is an NSAID
catsman -- ahhhhh, thanks
dannyd -- I take ibuprofen 600mg 3x a day
kurt-wi -- sam's club is cheapist for co-q10
dannyd -- It works for me
ragingbear -- it's a supplement that's still being tested
catsman -- for what Danny?
dwq272- -- bear, how can you be certain it helps? I'm not certain it doesn't. LoL
dannyd -- I've noticed my speech is helped and also the tightness in the shoulders
catsman -- miss getting to see you at clinic Danny
dannyd -- I go in April and then August
catsman -- I guess I'll see you in August
dannyd -- Hope so
samstl -- hey guys, got to go. talk to you soon.
samstl -- {goodbye samstl}
ragingbear -- when I am off it my symptoms become much worse plus since I have been on it my progression has been on a plateau for 8 years
catsman -- bye Sam
bill-ma -- I have to go also. Talk to you all later.
bill-ma -- goodbye Sam
catsman -- bye bill
bill-ma -- {goodbye bill-ma}
dwq272- -- I'm not trying to argue but my progression seems to have stopped 13yr ago and I have never taken anything
dannyd -- That's great
dannyd -- But I'm not sure that is typical
dannyd -- What kind of mobility do you have?
ragingbear -- You can go to http://www.livingwithals.net/ and see the new website but it's still a work in progress
kurt-wi -- way not typical
dwq272- -- aren't you Jeff L, bear?
ragingbear -- yes
ragingbear -- why?
dwq272- -- I was diagnosed local, then got second and third opinions at Ohio State and the University of Kentucky
dannyd -- Where do you live Dave?
dwq272- -- just wondered. You and I have talked before
dwq272- -- WV, Danny
dannyd -- The Chat will end automatically in about 2 minutes
ragingbear -- the chat is about to end so everyone have a GREAT week!
dannyd -- We'll be back on tonight
catsman -- see y'all next week
catsman -- {goodbye catsman}