02.27.2006
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

dannyd -- {welcome dannyd}
dannyd -- Have to go pick up my son, be back in a little while
frefallr -- {welcome frefallr}
frefallr -- {goodbye frefallr}
frefallr -- {welcome frefallr}
frefallr -- So, is there no one in this chat right now?
frefallr -- {goodbye frefallr}
meganwilliams -- {welcome meganwilliams}
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- and me
blueeyes1 -- fefallr is a cals for her father I was just talking to the cals
meganwilliams -- hello
meganwilliams -- oh ok
blueeyes1 -- did you want to go there for a few?
meganwilliams -- doesnt matter, do alot come in here
ragingbear -- {welcome ragingbear}
pigiron308 -- {welcome pigiron308}
blueeyes1 -- hey jeff howw are you?
blueeyes1 -- here they come megan
ragingbear -- Hi everyone!
pigiron308 -- hi all
dannyd -- Hi everybody I'm back
blueeyes1 -- wb danny
meganwilliams -- hello
ragingbear -- I am great except for some website issues
blueeyes1 -- has everyone met megan?
dannyd -- How is everyone doing this fine day?
ragingbear -- Hi Megan!
blueeyes1 -- doing good..been lazy today
dannyd -- What's up with the website Jeff
pigiron308 -- Hey Jeff did you know Sen. Talent withdrew his name as a cosponsor of S:658
meganwilliams -- hi nice to meet everyone
pigiron308 -- hi megan
dannyd -- Megan do you have ALS?
catsman -- {welcome catsman}
meganwilliams -- yes i do danny
dannyd -- When were you dx'd?
dannyd -- I was 12/2000
dannyd -- Hey Brian
catsman -- Hey y'all
meganwilliams -- april 04
ragingbear -- Oh just some mixup with my old credit card vendor issues where they are trying to charge me for services I canceled
blueeyes1 -- hi brian
dannyd -- Megan where do you live?
dannyd -- I'm just north of Austin Texas
kup -- {welcome kup}
frefallr -- {welcome frefallr}
catsman -- nothing like dealing with the corporate machine
blueeyes1 -- welcom kup and frefallr
catsman -- welcome kup, frefallr
frefallr -- thanks all.
meganwilliams -- live near dallas
catsman -- nice to see such a great turn out
dannyd -- Hi kup and frefallr
kup -- hello, everyone.
dannyd -- Do you go to the clinic at Southwestern Megan?
catsman -- lots of Texans
pigiron308 -- for sure
kup -- I thought I would just pop and say a quick little hello.
meganwilliams -- no i am sticking with my local docs
catsman -- glad to have you, kup
ragingbear -- Yes I saw Talent withdrew his support but I wrote a letter to the editor about his reasons because he's just trying to use a backdoor approach to ban the research
ragingbear -- Hi Kathi!
catsman -- the author or Talent?
kup -- Hi Jeff how are thing's ?
catsman -- editor, that is
ragingbear -- Talent
ragingbear -- very busy
kup -- did you get the newsletters all right Jeff ?
pigiron308 -- It has to be a step in the right direction even if it is small
pigiron308 -- It has to be a step in the right direction even if it is small
ragingbear -- yes thank you very much
catsman -- baby steps before we can run
pigiron308 -- did anyone watch 60 minutes last night
catsman -- I missed it
kup -- your welcome Jeff !
catsman -- had kids & grandkids over
kup -- I have to log off. have thing's to do for Dennis. Take care all, and God Bless !
pigiron308 -- a segment on stem cell research was very good
pigiron308 -- a segment on stem cell research was very good
catsman -- what did they have to say
kup -- I will try to pop on for this evening's chat.
catsman -- bye, kup
blueeyes1 -- take care kup
pigiron308 -- darn auto clicker
kup -- good bye catsman
ragingbear -- Talent might have committed political suicide because his re-election is in serious trouble which is good for us who want unrestricted research
kup -- {goodbye kup}
ragingbear -- Goodbye Kathi
catsman -- those guys seem to get re-elected despite our desires
pigiron308 -- Bush's policy stinks and human embryonic stem cell research from IFV should not be a moral issue
catsman -- people pick up labels, liberal, conservative or what have ya, & they gravatate towards that philosophy
catsman -- it shouldn't be but the religious groups make it so
catsman -- life begins at conception is their stance
blueeyes1 -- hey I'm breaking in here i was approved fo my power chair and will have it 3 weweks after vacation
pigiron308 -- Bush is beginning to look like a tyrant
pigiron308 -- great
frefallr -- I have a three year old that is demanding attention, so I have to sign off. This is my first visit to this site. It is nice to know you all are here. Forgive me if it seems like I'm just evesdropping. My dad has ALS and I'm trying to find ways to help him more. I'm sure I will be back soon. But, right now, I have to turn my attention elsewhere. Bless all of you.
blueeyes1 -- take care and great to see you frefallr
catsman -- cool, we can start planning the 1st Annual Powerchair Drag Racing National
frefallr -- {goodbye frefallr}
pigiron308 -- bye fre
ragingbear -- in this case it's his base abandoning him BECAUSE he withdrew his support for the total ban
blueeyes1 -- hey can I put nitrus on mine
catsman -- you bet
ragingbear -- I get the wheelchair I won in 2 weeks
blueeyes1 -- still looking for van with lift..might have to go awhile till we get the van
catsman -- you have to meet all the guidelines established by the NWCRA regarding piston displacement & carboration other than that alls fair
dannyd -- Jen did you ever get the house issue settled?
blueeyes1 -- nope, als coordinator will come out and check out the house..huby and dad are going to try to build the ramp
blueeyes1 -- stair lifts would not be good for me as my legs are getting weaker to transfer and walk
pigiron308 -- Jeff let's hope it's a contagious condition
catsman -- It's unusual for "good" things to become contagious
ragingbear -- let's hope so or there is an outbreak of common sense
catsman -- common sense is becoming rarer in our great country
blueeyes1 -- any suggestions?
catsman -- it used to be very prevalent but it's been replaced
pigiron308 -- Yes the real squabble is over SCNT research which seems more benign than hESC research to me
ragingbear -- I think people are beginning to realize the extreme position of the current leadership and we will see a correction
pigiron308 -- I certainly hope so
catsman -- as long as it's not Hillary
ragingbear -- Jen have you tried a transfer board?
catsman -- or Oprah
dannyd -- Jen not off the top of my head
pigiron308 -- haha
dannyd -- If I remember right there were a lot of stairs
blueeyes1 -- I can still walk for short distances and long distances is my wheel chair
blueeyes1 -- hey I even thought about home makeover..
catsman -- how far is a short distance, jen?
ragingbear -- Hopefully someone like McCain
blueeyes1 -- yes 8 up and 7 down
blueeyes1 -- to the car..maybe 4 or 5 houses
catsman -- Is he even in the running?
dannyd -- The biggest problem is the religous right has deep pockets and don't have any qualms about giving out misinformation and out right lies
catsman -- I've almost given up on walking
catsman -- thats true, danny
blueeyes1 -- well lets put it this way when I start breathing and gasping I give up too
pigiron308 -- Has McCain made a statement about where he stands on stem cell research
catsman -- they have to make things up cuz they don't have any facts to use
pigiron308 -- deep pockets and blind followers
catsman -- most people will not bother to look up the facts & just accept as facts what they're told
pigiron308 -- very true
catsman -- its easier to let someone else tell you how to behave or believe than to take a stand & accept responsibility for your on acts
ragingbear -- You know I totally respect someone who does not want to have a stem cell treatment performed on them for religious reasons like those who refuse blood transfusions but it shouldn't be a legislative issue
catsman -- absolutely, jeff
pigiron308 -- yep
blueeyes1 -- I have a gripe
catsman -- I'm glad I don't believe that way, tho
catsman -- tell us jen
ragingbear -- McCain totally supports unfettored research
ragingbear -- what is it Jen?
pigiron308 -- Great
blueeyes1 -- I have called so many places in my towwn and another city abotu help with financing, grants and things of that nature to find a van with a lift...all I get is no, we don't know how to help you you're on your own...hello there are other disabled people besides me in this town...they make too much money off of us
blueeyes1 -- by the way I was approved for social security...but they have 60 days to appeal
catsman -- of course, they do & most likely will
ragingbear -- contact your state's Vocational Rehab program just bypass your local government
blueeyes1 -- how do I find hat..our problem is they are basing it off of matt income and he makes a good amount of money but they don't consider what it takes to upkeep this disease
ragingbear -- they paid for my lift
catsman -- Vocational Rehab, huh?
catsman -- wonder what the Texas equivilent is?
ragingbear -- are you in North or South Carolina?
blueeyes1 -- brb dog needs out..be a few
ragingbear -- it's a national program administored by the states
ragingbear -- Jen that question was for you, what state are you in?
catsman -- cool, what kinda things will they help with
ragingbear -- anything that will help you work even if it's for only 1 hour a week
ragingbear -- they also paid for my HeadMouse
catsman -- so, you have to work, huh? What kinda work?
ragingbear -- some computer training and computer upgrades
catsman -- I would love to do something
ragingbear -- my family owns a printing business but I only "worked" for them for a year
catsman -- my family are farmers
blueeyes1 -- indiana
ragingbear -- you could easily do website creation and a family member has a business it will be easier. you could do their books
ragingbear -- Give me a minute Jen and I will find it for you
catsman -- me & bookkeeping, hmmm, might as well put a gun in the hands of the VP
pigiron308 -- haha
dannyd -- Texas has Dept of Assitive and Rehab Services or DARS
catsman -- have ever associated with them Danny
dannyd -- I had a meeting with them about a month ago
dannyd -- you have to call them to get on the list
catsman -- how did the meeting go?
dannyd -- Has to do with anything to keep you independent
ragingbear -- Jen go to http://www.in.gov/fssa/servicedisabl/vr/offices.html
dannyd -- They made a list of things I will need down the road and they ask the legislature for funds to fulfill the needs
catsman -- cool, they have a website?
ragingbear -- also go to http://www.in.gov/fssa/servicedisabl/
blueeyes1 -- thank you...I have bookmarked them and will take a look at them later
dannyd -- http://www.dars.state.tx.us/
ragingbear -- Jen are you still with us
catsman -- thanks danny
ragingbear -- this is exactly the type of information I want to compile for each state on the new website
ragingbear -- it's just going to take some time
catsman -- anything worth while always does, Jeff
dannyd -- You should post it on the yahoo board and ask for a rep from each state to research their state government departments
dannyd -- I just did Texas for ya
ragingbear -- good Jen because it looks like Indiana has some great programs
ragingbear -- I will definitely do that
blueeyes1 -- mostly based off of household income there is a free van lift available in my town for a mini-van
ragingbear -- have any of you had a chance to look at the website's format?
dannyd -- Is anyone available to host tonight?
ragingbear -- vocational rehab doesn't really look at income
taco -- {welcome taco}
blueeyes1 -- ok I will call them I need all the help I can get..I must run it is dinner time
blueeyes1 -- thank you for your help
dannyd -- Take care Jen
catsman -- If you need me I'm not busy
pigiron308 -- Jeff I have looked several times
dannyd -- Hi taco
ragingbear -- I can try to be there
catsman -- bye, jen, hi taco
taco -- hi there
ragingbear -- have a great week Jen!
pigiron308 -- by Jen
taco -- this is my first time on this chat
ragingbear -- what do you think of it?
dannyd -- welcome
taco -- hi catsman
ragingbear -- Hi taco!
catsman -- I'm Brian, Texas dx 05/05
dannyd -- Where you from taco?
taco -- great, ive been trying to find a A.L.S. chat eversence I got sick
dannyd -- I'm just north of Austin, Texas
dannyd -- we're here 4 times a week
pigiron308 -- very nice I signed up but it wouldn't accept my password the other day
taco -- Im from temeclua,ca
catsman -- we'll be here again at 6 pm your time tonight
dannyd -- Sundays from 2-5 mondays 2-5 and 8-10 and wednesdays from 6-9 all times are central
taco -- o ok
dannyd -- When were you dx'd taco?
taco -- five years ago
taco -- are you sick to?
dannyd -- me too 12/2000
catsman -- thats a good long time
blueeyes1 -- {goodbye blueeyes1}
dannyd -- I'm lucky progressing very slowly
taco -- it has both my hands
ragingbear -- what do you think of the http://livingwithals.net/index.html website pigiron? Did you have the website email you your password?
taco -- need to find a suport group
catsman -- I love the site
taco -- yes
taco -- found a lot of info there
ragingbear -- taco go to http://health.groups.yahoo.com/group/living-with-als/
dannyd -- Are you still walking?
taco -- yes
pigiron308 -- I hate to say can't remember but
dannyd -- great
taco -- It is in my legs though
dannyd -- Has anyone heard from Susan?
pigiron308 -- I will try again this evening and see what happens
dannyd -- I'm just very stiff
taco -- yea
ragingbear -- Thanks Brian hopefully this next month it will be much more functional because I spent this last week collect and organize the information but I think you can start to see where the website's going.
dannyd -- Megan you still with us?
catsman -- I've been worried about Susan but have not heard from her
taco -- be right back
ragingbear -- I am also in the process of getting a new computer so that's slowed my progress somewhat
ragingbear -- I am writing her a letter
dannyd -- New chair new computer you gonna have all the latest high tech stuff
catsman -- give her our best, please, Jeff
catsman -- Jeff's going cybernetic
ragingbear -- yeah after 13 years with my old wheelchair and 4 1/2 with this computer I really need the updating
ragingbear -- I will Brian
dannyd -- Jeff's joining the 21st century
catsman -- a propane processing plant in Lubbock just caught fire
catsman -- lots of some & fire
dannyd -- Brian has Dick been with you on wednesdays?
catsman -- he has
dannyd -- Haven't seen him in a couple of weeks
catsman -- I missed last week due to my ISP not oroviding any IS last wednesday
dannyd -- propane can be a tricky fire to get under control
ragingbear -- the Permobil guy said my old wheelchair is a horse and buggy compared to a Hummer, that is how much the technology advanced since I got it
catsman -- he's onery as ever
catsman -- wow, big change
dannyd -- I gotta run folks
taco -- see ya
dannyd -- Hope everyone has a great week and will talk to you soon
ragingbear -- I feel like I have been beaten up after being in my present wheelchair
catsman -- bye y'all
catsman -- i bet
ragingbear -- have a great week!
catsman -- I'm needin' to get one myself
pigiron308 -- Jeff I just tried again with the same result--I will sign up again and get back to you
catsman -- the best company in town doesn't accept my insurance
dannyd -- {goodbye dannyd}
ragingbear -- Permobil is the way to go just contact them through their website
catsman -- I'm gonna do that. What about Invacare?
ragingbear -- please let me know if you have more problems logging in
pigiron308 -- I will do that--gtg bye all
ragingbear -- they are good too but to my knowledge Permobil is by far the most comfortable which becomes increasingly more important
ragingbear -- have a GREAT week!
ragingbear -- as I can attest to
catsman -- I'll be using you as my barometer since you have the most experience of all the PALS I know
ragingbear -- I will be able to tell you more in a couple of weeks when I get mine
pigiron308 -- {welcome pigiron308}
taco -- {goodbye taco}
catsman -- I guess the chat is about to end so I'll be telling you all adeiu
ragingbear -- Have a great week!
pigiron308 -- Jeff I just registered again and everything worked fine
ragingbear -- you can always email me and we can meet in the new chat room if you need something
ragingbear -- good I am happy to hear that