01.30.2006
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

libby_j -- {welcome libby_j}
libby_j -- Will keep checking back...
dannyd -- {welcome dannyd}
dannyd -- Hi libby
libby_j -- hi im back
libby_j -- how are you?
dannyd -- I'm doing great. How about you?
dannyd -- Be back in a few minutes. Have to pick up my son at school
libby_j -- Well, bad head cold dragging me down a bit but ok
craftycarolyn57 -- {welcome craftycarolyn57}
craftycarolyn57 -- hi
craftycarolyn57 -- this is my first time here
libby_j -- Hello Carolyn
craftycarolyn57 -- hi how are you today
libby_j -- OH Ok I have been a few times but I dont have als, well not dx yet it may be something in the motor neurone family of disease
libby_j -- Suffering with a cold but OK
craftycarolyn57 -- welli was told i had als last janaury
db273 -- {welcome db273}
db273 -- hi
craftycarolyn57 -- hello db273
libby_j -- IM sorry to hear it Carolyn, how are you doing with it? Are you on any treatment? Hello Db
craftycarolyn57 -- db273 do u have Als
craftycarolyn57 -- yes i am taking meds for it is about all
db273 -- yes i do dx 12/95
craftycarolyn57 -- i got to see a team of doc's every three months
catsman -- {welcome catsman}
libby_j -- Hope you dont mind me asking questions
db273 -- a mild case so far
craftycarolyn57 -- what id dx
db273 -- hi brian
craftycarolyn57 -- is
db273 -- diagnosed
libby_j -- Are you still walking? Dx diagnosis
catsman -- how y'all doin'?
craftycarolyn57 -- what is dx
db273 -- ask away libby that is the reason the chat room is here......yes with walker some mostly wheelchair now
craftycarolyn57 -- hi catsman doin ok here how r u
libby_j -- I don't know how your chest etc reacts muscle wise if you have a cold but I have ALOT of muscle ache from sneezing coughing etc
catsman -- still breathin', carolyn
craftycarolyn57 -- well great
db273 -- probably muscle weakness libby
craftycarolyn57 -- do u have ALS catsman
catsman -- I do, indeed
ragingbear -- {welcome ragingbear}
catsman -- yourself?
db273 -- hi jeff
catsman -- Hey, Jeff
ragingbear -- Hi everyone!
craftycarolyn57 -- how long have u had it
craftycarolyn57 -- hi ragingbear
libby_j -- I thought perhaps Richard.
catsman -- dx'd 05/05
ragingbear -- How's it going?
blueeyes1 -- {welcome blueeyes1}
catsman -- but dealing since 03
libby_j -- hello Blue!
craftycarolyn57 -- what does dx mean
blueeyes1 -- hhey libby nice to see ya here
catsman -- how's St. Louis, Jeff?
db273 -- hi jen
blueeyes1 -- hi dick nice to see ya...been in out of chatzy been slow
libby_j -- Im pretty tired out witha cold but thought i'd stop by so its nice to see you too!
ragingbear -- I was diagnosed October '93
catsman -- take care of yourself, libby
blueeyes1 -- I think I'm getting a cold too yello/greenish stuff in my trach
blueeyes1 -- take care libby glad to see you
catsman -- colds are really tough
blueeyes1 -- dxd 1/04
catsman -- they take so much out of you
craftycarolyn57 -- i was diagnosed in 01-05 so far just had a mild cold
libby_j -- My breathing is a bit worse but im hoping stays above my chest. I have afever too but hoping its viral
craftycarolyn57 -- right after i took my flu shot
catsman -- it would be nice if we didn't have to deal with colds & allergies on top of everything else
craftycarolyn57 -- amen to that one
blueeyes1 -- I have asthma on top of my brathing problems..I wish it would all just go away :)
libby_j -- Ive been luck about a year since ive had one. Kids in school bring it home
catsman -- as would we all, Jen
craftycarolyn57 -- i got mine form gd son
catsman -- that they do
libby_j -- I blame it on the one who sneezes without covering!!
craftycarolyn57 -- is everyonein the room in a wheelchair
catsman -- that would be too many folks
libby_j -- OUtside the house I am
ragingbear -- Hi Jen, if you get a fevor be sure to have it cultured. Do you have a Cough Assist machine?
db273 -- i am mostly
catsman -- ditto me, carolyn
blueeyes1 -- nope I can cough things up..also take breathing treatments every 4 hours..I due at the doctor next Monday
ragingbear -- Brian it's overcast here.
craftycarolyn57 -- i do very little walking in house none out side
craftycarolyn57 -- where is everyone from ...i live in TX
catsman -- hot, dry & sunny in West Texas
db273 -- that's fast carolyn
libby_j -- I use two canes and lots of furniture indoors id put most gymnasts to shame!
libby_j -- I live in SW Scotland
craftycarolyn57 -- lol libby
db273 -- louisville ky
dannyd -- Hi everybody I'm back
blueeyes1 -- Indiana
catsman -- love the hallway acrobatics, Libby
dannyd -- I'm just north of Austin, Texas
craftycarolyn57 -- hi dannyd wb
catsman -- wb, Danny
craftycarolyn57 -- Groves TX here
blueeyes1 -- LOL Libby
ragingbear -- Cough Assist would be very helpful in getting over the cold much quicker and would probably eliminate the need for breathing treatments Jen.
blueeyes1 -- does anyone else take rilutek here?
ragingbear -- St. Louis
ragingbear -- I do
dannyd -- Where is Groves? By San Antonio?
craftycarolyn57 -- me
catsman -- yup, I do
dannyd -- I do too
blueeyes1 -- do you see yourself slowing down? I can tell a difference
craftycarolyn57 -- close to port arthur
blueeyes1 -- jeff I am going to ask doc even though I can still cough?
dannyd -- So Carolyn do you go to clinic in Houston?
craftycarolyn57 -- does anyone have a bipap machine to help thier luns at night
catsman -- as for the cough assist, Jeff, when should it be considered?
craftycarolyn57 -- yes i do every 3 mons
dannyd -- I use a BiPAP
blueeyes1 -- I did for awhile have a trach and vent at night and during the day as needed
catsman -- I use bi-pap Carolyn
craftycarolyn57 -- do u dann
blueeyes1 -- brb dog needs out
craftycarolyn57 -- does it help u very much catsman
dannyd -- Carolyn when do you go back?
catsman -- when is your next clinic, Carolyn?
libby_j -- I use a VPAP its a bit more adjustable I think and oxygen
catsman -- i like it, I sleep better
craftycarolyn57 -- 03/03/06
ragingbear -- YES because even though you can cough (I can still cough) it is not effective enough since you are weakening
dannyd -- I go in April
catsman -- at what point would you reccommend, Jeff?
catsman -- 02/10
craftycarolyn57 -- well the BI PAP does not help me sleep
ragingbear -- Brian when you go on bi-pap you should get one
catsman -- I don't guess we'll be seeing each other, Danny, Carolyn
libby_j -- Me either carolyn but it corrects my hypoventilation and obstruction and I dont feel as tired in the day
ragingbear -- that was Dr. Oppenheimer's recommendation for it
craftycarolyn57 -- does everyone take a lot os vit's too
catsman -- i suggest using a wedge cushion also, carolyn
craftycarolyn57 -- i have hospital bed to sleep in
catsman -- I take everything Dr. Appel gave me
ragingbear -- no I don't
libby_j -- How about an electric bed to raise your head? Anyone have one?
db273 -- me neither
catsman -- no I don't
craftycarolyn57 -- i take vit e & c and bata cartine and coq 10
craftycarolyn57 -- i have elect bed
ragingbear -- I just found out that I women the Permobil wheelchair giveaway and I will be featured in their advertising!
catsman -- I also take B vitamins
catsman -- cool, when's the first ad
craftycarolyn57 -- did doctor appel tell u to take vit B
ragingbear -- I still sleep in a regular but I move everyday to a Lazyboy
catsman -- no, my own thing
dannyd -- I take all those vits except B
catsman -- I want a Lazyboy
db273 -- great jeff
dannyd -- I started Taking A
craftycarolyn57 -- does it seem to help u
libby_j -- I dont know what Id do without my recliner
ragingbear -- I don't know but first I have to get the new wheelchair
catsman -- I like the B's, they seem to help my energy levels
craftycarolyn57 -- i have a lift chair and i love it more than any chair i have had
blueeyes1 -- ok back
libby_j -- I had to try so many, it was arm suuort that was crucial for me as they are my weakest part
db273 -- my recliner is my bed for the day most days http://img64.imageshack.us/my.php?image=dcp00186qo.jpg in fact here is a picture of me at play
libby_j -- wb blue dog ok?!
catsman -- only thing missing from that pic, Dick, is a cold beer
blueeyes1 -- yeah he likes playing in the snow
db273 -- right brian
catsman -- snow? What's snow?
db273 -- you made me thirsty brian and too close to supper
catsman -- in a couple of hours, Dick
libby_j -- Good picture! I must put some online for you to get a peak at me!
db273 -- yes brian
db273 -- ok libby life of leisure
catsman -- love to see you, Libby
agreys -- {welcome agreys}
blueeyes1 -- hi susan
db273 -- hi susan
libby_j -- I know what you mean :o)
catsman -- SUSAN!!!!!!!!
agreys -- Hey, all.
agreys -- Brain...where the heck have you been???
agreys -- Brian...sheesh
catsman -- swaetin' in the heat
agreys -- Do tell.
craftycarolyn57 -- bbl nice talking to everyone tc Gb and hage
catsman -- oh yes
agreys -- Hi, Dick, Jen, Libby
ragingbear -- Hi Susan!
agreys -- Hey, Jeff!
craftycarolyn57 -- {goodbye craftycarolyn57}
dannyd -- What am I wood?
libby_j -- http://img.villagephotos.com/p/2005-8/1061562/LIbbyBoysatCaerlaverockWetlandreserveDec272005.jpg try this i dont know if it works
libby_j -- hello susan
agreys -- Hello, Danny (batting eyelashes)
blueeyes1 -- hi danny
agreys -- I'll have to cut and paste that later.
blueeyes1 -- your sons are so cute libby
blueeyes1 -- how are you doing susan?
libby_j -- ITs always beter to meet face to face. The are great kids
agreys -- I'm okay, Jen--you?
agreys -- Is that you and your sons, Libby?
libby_j -- This is going off down the lane behind our hoome
agreys -- Jeff, how's the revamp coming along?
libby_j -- Yes Susan, they are great about the chair.
libby_j -- http://img.villagephotos.com/p/2005-8/1061562/LibbyLeadingtheway.jpg
agreys -- Super-looking family.
db273 -- nice picture libby
ragingbear -- Going good
agreys -- Like that one...lovely lane
libby_j -- It was so cold that day with the boys that the power went on the chair! We only managed 5 miles in the end
agreys -- Good. I hope one day it lets me register. =)
agreys -- Wow. How did you get back?
blueeyes1 -- I'm doing better had to give me oxygen
agreys -- Did that help a lot?
catsman -- does the oxygen help, Jen?
agreys -- Danny, did my eyelashes knock you out?
dannyd -- Was looking at the pictures
libby_j -- Susan I knew I only had limited power so made no adjustments and went slowly and kept my fingers crossed! Now that show and tell is over, I must make tracks to bed. Take care everyone see you soon..
agreys -- Take good care, Libby.
agreys -- Thanks for sharing the pics
libby_j -- Night all
db273 -- bye libby always nice to talk to you
libby_j -- {goodbye libby_j}
catsman -- sleep well, Libby
catsman -- How have you been, Susan?
agreys -- I'm getting used to a new home and hospice. What about you, Brian?
catsman -- I'm still breathin'
agreys -- Good thing!
agreys -- You've been missed.
db273 -- i find if i use lift or tilt it uses up the power faster
dannyd -- Makes living alot easier
catsman -- I've missed it
blueeyes1 -- yes the oxygen is for the vent at night and when I need it gives me more energy and sleeping less
blueeyes1 -- I guess my xygen level were dipping in the night
agreys -- Me, too, Dick but I wouldn't be without either.
agreys -- How did they figure tht out, Jen?
db273 -- right susan
catsman -- how often do you recharge?
agreys -- Every 4-5 days.
db273 -- about 3 days or so
agreys -- You get one yet, Brian?
catsman -- how much do they weigh?
agreys -- Not much of a derby if you don't have a soapbox.
agreys -- 300 pounds, I believe
catsman -- I'm working on getting it, Susan
db273 -- my new one is heavier than old one about 300
agreys -- Cool. Let me know when you're ready to rumble.
blueeyes1 -- they do overnight oxymetry study in the home and fax it to the doc every 3 months to 6 months
agreys -- I'm glad you're improved, Jen
catsman -- have you thought about holding jousts?
db273 -- i love the tilt cause keep feet rest off then and easier to sit and stand and move around the house but tilt back so don't break a foot
agreys -- Dick, what was your old and what's your new?
agreys -- You can pull off the foot rests???
db273 -- my old was a jazzy and new one is invacare
agreys -- We can do jousts, sure.
db273 -- yes power ones are under bed and got new lighter ones till i am really imobile
agreys -- Awesome.
catsman -- what does one suggest getting on a chair?
agreys -- All the bells and whistles available.
agreys -- Tilt, recline, leg lifts, and elevate.
catsman -- define bells & whistle's or do you mean bells & whistle's?
db273 -- get everything the dr will write cause it is a one time thing. they told me 5500 my own money but it came and the paid everything
agreys -- With a little fog horn. =)
agreys -- Medicare won't pay for elevate.
db273 -- i did not get recline thought i ordered it but was not on it so gave up easy after taking eight months to get it
catsman -- dang
agreys -- 8 months? Bummer!
catsman -- my insurance runs out in April
db273 -- i love elevate for shopping cause can't reach a lot of stuff at store better get going brian
agreys -- Will your doctor write an order now? Does he recommend a supplier that works fast?
catsman -- see my md's wednesday getting script then
agreys -- I love elevate for cabinets and high light switches.
db273 -- my ins paid for elevate so lucked out and mda did not pay for anything
blueeyes1 -- how do you know which one to get and is there one that will fit in the trunk and still be able to take vent with if I need it
db273 -- they didn't have too
catsman -- really, Dick
agreys -- Good. Get the name of good supplier - DME
db273 -- get the best rep you can get jen
agreys -- Jen, don't know of a power chair that can be put in a car trunk
agreys -- Awesome insurance, Dick
db273 -- my chair cost 16600 and they paid it all
catsman -- wow, hope mine does
blueeyes1 -- afraid of paying for van and other costs associated with power chair
agreys -- Medicare, MDA and supplement paid most of mine.
agreys -- Jen, MDA and ALSA always seem to know of used vans.
db273 -- a gal in chatzy got a permobile the cadilac of chairs paid 30000 and they paid all of hers
agreys -- My Permobil cost me $1,100
db273 -- wonderful susan
blueeyes1 -- I have an HMO wonder what they will pay for and if I really need a power chair yet
agreys -- Took 5 weeks to get.
ragingbear -- That's what I won Dick
agreys -- Jen, if you suspect you need one, you need it.
db273 -- good rep susan
agreys -- The best!
db273 -- she has turn signals and headlights i think
catsman -- lately Blue Cross/Blue Shield has been denying all DME purchases
db273 -- my jazzy had a horn this on doesn't so going to get air horn off big truck
agreys -- Why? If medically necessary?
blueeyes1 -- oh great..well I can only walk so far with leg brace and use scooters and w/c in stores for now
catsman -- I don't know why?
agreys -- LOL, way to toot, Dick
catsman -- they don't explain anything to me
agreys -- Don't take no for an answer.
db273 -- loved the one i had on my bus
agreys -- Can you imagine sneaking up on someone and hitting an air horn? What fun!!
catsman -- sounds like fun
agreys -- How high can you make people jump?
blueeyes1 -- oh my gosh that would be interesting..I already run them over in the scooter as it is
db273 -- especially the ones who walk about four abreast and then stop
catsman -- I gotta go folks
agreys -- I have pictures of crushed toes on my fenders. =)
catsman -- got a b-ball game to attend
agreys -- Brian, good to see you!
db273 -- bye brian see you wed my turn to buy
agreys -- Take no prisoners!!
blueeyes1 -- by Brian take care
catsman -- ok, Dick
blueeyes1 -- LOL Susan
catsman -- see y'all later
db273 -- how many so far susan
catsman -- {goodbye catsman}
db273 -- are you an ace yet
dannyd -- Is anyone going to be on tonight?
agreys -- 12...shooting for 15 by tomorrow.
blueeyes1 -- I wasnt paying attention in the scooter and took out my sisters
blueeyes1 -- not sure
agreys -- I can try, Danny.
agreys -- Jen, sisters understand.
blueeyes1 -- but then they ran from me :)
agreys -- Mad woman on scooter. Head for the hills!!
db273 -- lucky my walls or doorways can't talk
agreys -- Mine can. They say OWIE.
db273 -- big reason i hate footrests
agreys -- Be glad you aren't Shaquille O'Neal
agreys -- Talk about foot rests!!
db273 -- grand jury is going to hear the guy who collected money for als and spent it.....isn't he well and rich
agreys -- Hope they hang him!
blueeyes1 -- oh I heard about that what a big scam
db273 -- he can't seem to get together with state police he has excuses
agreys -- If he really had ALS, he'd be easy to find.
db273 -- yes a fact
db273 -- his own brother was blasting him last week
agreys -- I saw that.
db273 -- his mom might be involed too
blueeyes1 -- I think his brother is a lawyer too?
agreys -- Danny, I saw yesterday's chat transcript. Wonderful chat!
db273 -- don't know jen
db273 -- supper time for me so bye folks always fun
agreys -- For certain, his brother's ashamed of him.
agreys -- Take care, Dick.
db273 -- {goodbye db273}
dannyd -- I felt like the Maytag repairman. Lonely, lonely, lonely
agreys -- I know. I'm sorry. Been having some health problems.
agreys -- Don't know what has happened to Sue.
blueeyes1 -- must run too....take care and nice chatting..hang in sue..my prayers are with you all
blueeyes1 -- sorry susan
agreys -- Jen, take care. Always nice seeing you.
agreys -- NP, Jennifer. =)
blueeyes1 -- bye bye
blueeyes1 -- {goodbye blueeyes1}
agreys -- Family is home.
agreys -- I'll try hard to be here with you this evening.
agreys -- See y'all soon. Take care.
agreys -- {goodbye agreys}
ragingbear -- {goodbye ragingbear}
dannyd -- {goodbye dannyd}