03.06.2006
04:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- {goodbye blueeyes1}
blueeyes1 -- {welcome blueeyes1}
catsman -- {welcome catsman}
catsman -- hey, Jen
catsman -- hellooooooo
blueeyes1 -- hey I thought I was on my own
blueeyes1 -- how have you been
catsman -- I'm here, how're ya doin'?
catsman -- I'm still breathin'
blueeyes1 -- LOL me too
catsman -- strange that Danny or Jeff aren't here
brandon-heching -- {welcome brandon-heching}
blueeyes1 -- ran out o meds...because I normally get them through mail order they said that it was going be here and noww i am dragging
blueeyes1 -- hello brandon
catsman -- I've become very fond of breathin'
catsman -- hey Brandon
catsman -- I hate running outta meds
brandon-heching -- Hi, blueeyes :)
blueeyes1 -- me 2...got my power chair..or I should say pink caddy
catsman -- don't miss them until you don't have them
blueeyes1 -- yes you're right :)
catsman -- you got a pink one?
libby_j -- {welcome libby_j}
blueeyes1 -- yeah they said I was different when they delivered it
libby_j -- hello
blueeyes1 -- hello libby
catsman -- libby, howdy
catsman -- too cool
libby_j -- More company here tonight!
catsman -- I'd like a pink one
catsman -- there is
blueeyes1 -- it's like mary kay or a lipstick pink
catsman -- everyone have a good weekend
brandon-heching -- hi catsman
catsman -- ohhhhh, cool
libby_j -- Barbiedoll pink!
blueeyes1 -- http://img309.imageshack.us/img309/8972/chair12dl.jpg
libby_j -- having two boys here I neber have a hink of pink anywhere!
blueeyes1 -- thats a picture of my chair
blueeyes1 -- hey libby how's dan feeling?
catsman -- my Mom was the same way, with 3 boys
libby_j -- Ok but was back at hosp today and going back tomorrow chest pain
blueeyes1 -- are they going to look at the fluid again?
catsman -- I can empathize libby, I saw a cardio today
libby_j -- Ultrasound tomorrow as couldnt tell if level was chanig on xray
blueeyes1 -- are you doing ok?
blueeyes1 -- huggs libby
libby_j -- terribly tired
catsman -- that sucks
libby_j -- ty
libby_j -- MIssing rest
blueeyes1 -- how did cardio visit go?
libby_j -- it makes a huge difference, to me anyhow
catsman -- Brandon, are you CALS or PALS?
catsman -- scheduled for echo & stress test at month end got lipitor in mean time
libby_j -- DR visits arent to bad if they a close and dont do anything to you!
libby_j -- Watch you dont get weakness rfrom the liptor Catsman
blueeyes1 -- wow ...you're right libby
blueeyes1 -- does anyone know rob or sharob?
libby_j -- Had a devastating reaction on my muscles
catsman -- I'm watching it
catsman -- dr said it I notice anything to STOP immediately
libby_j -- Absolutely
catsman -- Why are you not in your chair, Jen?
libby_j -- I was 10 days on the lowest dose when it hit hard
catsman -- I got 10 mg
blueeyes1 -- I really don't need it in the house, I also have a tri-level..still looking for financial help...
catsman -- I'm still trying to win lotto to get you new house
brandon-heching -- Sorry, I just received some new communication system to help around here.
catsman -- no worries brandon
catsman -- take your time
brandon-heching -- cats, neither. My wife has Rigid Spine MD.
blueeyes1 -- awww thankx...we found temp ramps for front door..if I get worse wew'll figure out howw to get it downstairs
catsman -- ahhhh, I see
catsman -- buckle yourself in, strap on head gear & ride it down
blueeyes1 -- LOL I thought about it hubby was plaing with the chair the other night thought he was going down headfirst
catsman -- lol
prickly-pear- -- {welcome prickly-pear-}
libby_j -- I am going to head for bed now, nice to see you all. Take care and Jen you should geta cycle flag for when you hit the road! I have one! Night night
brandon-heching -- are any of you ventilated?
catsman -- bye libby
blueeyes1 -- night night libby hugs and take care of yoursef letme know howw things are
brandon-heching -- oh.. my wife doesn't have a masters degree in Rigid Spine.. she's actually labelled with Rigid Spine Syndrome..
blueeyes1 -- I ventilate at night
catsman -- welcome, prickly
blueeyes1 -- hi prickly
catsman -- I'm not vented
prickly-pear- -- hi all
brandon-heching -- blueeyes, trach, mask, nasal?
blueeyes1 -- I just had trach done in July of last year
brandon-heching -- of course, if any of this is too private or uncomfortable please let me know :)
blueeyes1 -- nope that's what we're here for
catsman -- I use bi=pap at night
blueeyes1 -- prickly are you new?
blueeyes1 -- I used to bipap I wish I could have gone back
prickly-pear- -- no , i'm an old timer
catsman -- I love mine, I feel better in the morning
catsman -- don't know I've ever met you prickly
blueeyes1 -- that's how I feel with the ventilator
blueeyes1 -- me either
catsman -- I'm Brian, Texas, dx 05/05
blueeyes1 -- I'm Jen, Indiana diagnosed 01/05
prickly-pear- -- this is first time here.
craftycarolyn57 -- {welcome craftycarolyn57}
catsman -- ohhhh, well glad to see ya, CALS or PALS
blueeyes1 -- hello carolyn
catsman -- howdy carolyn
craftycarolyn57 -- hi all
prickly-pear- -- hi cc
catsman -- What meds do you take, Jen?
craftycarolyn57 -- i prickly
craftycarolyn57 -- blueeyes we weredx at the same time
catsman -- Did anyone know someone who had ALS before becomeing dx'd yourself?
craftycarolyn57 -- nope only knew about it when i watcch the jerry lewis tela,
craftycarolyn57 -- no i hear of people all around me that have it
blueeyes1 -- I just realized that...nope but my hubby's aunt had it
catsman -- seems to be the norm
craftycarolyn57 -- now
catsman -- I've known 3 people
blueeyes1 -- I am on Rilutek, Zoloft, Baclofen and Valium it's keeping me walking but very heavy legs
catsman -- one in the same community of 300 people
catsman -- do you like the zoloft?
blueeyes1 -- yes I am on the very lowewst dose and it keeps me "happy" I call them my happy pills
craftycarolyn57 -- i'm just on rilutek and aveil and all kinds of vit's
craftycarolyn57 -- foes and one in tis room got to doc appel
blueeyes1 -- I take 2 calcium because my muscles are wasting my my back, legs and butt so the woman doctor put me on extra calcium incase I fall
craftycarolyn57 -- does
prickly-pear- -- are you worried about your children, blueeyes?
craftycarolyn57 -- dang cant type today
catsman -- i take lexapro for my happy pills
catsman -- I see Dr. Appel, carolyn
craftycarolyn57 -- i just went this weekend
catsman -- when's your clinic visit, carolyn?
blueeyes1 -- no they live wiwth their dad they are 11 and 13
craftycarolyn57 -- they told me everything is about the same
blueeyes1 -- I refuse to do dna I am not messing to know what their future is
craftycarolyn57 -- this past friday
catsman -- close to the same ages as my kids, Jen
catsman -- famial is only about 1% of cases
catsman -- don't see any reason to do DNA
catsman -- I went on Feb 10
craftycarolyn57 -- wonder why we go on different days and months
catsman -- I love those guys in Houston
craftycarolyn57 -- i go back june 3
craftycarolyn57 -- me too very much
catsman -- It's not called First Friday's for nothing
blueeyes1 -- I don't go to our local als clinic it is considered out of nework..so I go to my regular neurologist
catsman -- they have lots of cases to see
craftycarolyn57 -- yea i guess they do
craftycarolyn57 -- and yet they just treat everyone like they love them all the same
craftycarolyn57 -- they r never in a bad mood
catsman -- that they do
blueeyes1 -- hubby and I are going to try out next month a local young couples als group
catsman -- is your clinic MDA Jen?
catsman -- you see some many different levels of advancement at clinic
craftycarolyn57 -- the clinic i go to only has 3 couples that goes there
blueeyes1 -- it's an MDA/ALS Clinic I belong to both
catsman -- MDA clinics are free of charge
catsman -- we had 38 people at ours last month
craftycarolyn57 -- wow thats great
blueeyes1 -- I guess the overall checkup wasn't
catsman -- multiply that by 12 & you get lots of cases
craftycarolyn57 -- wish ours would get more in it
catsman -- thats true
blueeyes1 -- there is not a lot available in the way of help for home modifications for us pals
catsman -- my next visit is May 5
craftycarolyn57 -- boy u got that right
catsman -- unfortunately too true, Jen
blueeyes1 -- there needs to be more progams and understanding
catsman -- let's stop paying taxes until they pay more attention to us
craftycarolyn57 -- mine is june 2
blueeyes1 -- I was looking for some financial information get this we have to make less than 38,000 to get a ramp built at our house from the town
craftycarolyn57 -- my kids had a benifit for me to redoe my bathroom
craftycarolyn57 -- they raised 5000 for me
blueeyes1 -- well I wrote the local newspaper and asked them if they're interested in my story and wrote my old high school principal
catsman -- cool carolyn
catsman -- have you heard anything, Jen?
blueeyes1 -- the local newspaper said let me see what I can come up with
blueeyes1 -- the old high school principal just wrote him last friday..I feel like I'm begging
craftycarolyn57 -- my soninlaw built me a ramp from 3/4 plywood and 2/4's
catsman -- I can say that myself, don't mean anything gonna happen
catsman -- if you don't advocate for yourself nobody else will either
craftycarolyn57 -- dont feel like that it is somthing u need to get by and like a life to help you live longer
catsman -- my dad had a ramp built at my house & his
blueeyes1 -- so do you think the local newspaper would look into it?
catsman -- i'd be stuck without my ramp
craftycarolyn57 -- me too
catsman -- Who did you speak to, en?
blueeyes1 -- the main community writer of the newspaper
craftycarolyn57 -- i am sure they wil if not go to you local tv station and talk to them
craftycarolyn57 -- are if you have a church home talk to them
blueeyes1 -- I don't belong to a church around here..we are catholic and both divorced...it's hard
catsman -- that should help Jen
craftycarolyn57 -- so do u live alone Jen
craftycarolyn57 -- oh with hubby ...da
blueeyes1 -- nope I live with my fiance
craftycarolyn57 -- oh ok
blueeyes1 -- I call him my hubby but we're really not "married" because of the govt and his assets
craftycarolyn57 -- if hr knows how to build one he can do it for around 100 out of wood
blueeyes1 -- wew're going to go with one in the front until I get so bad andhave to live downstairs
blueeyes1 -- I'm just overwhelmed...I think we both are
craftycarolyn57 -- i know that feeling
catsman -- try & find others who have ALS in your area & see if you can get more intrest that way
blueeyes1 -- all because of my chair
catsman -- it's overwhelming
blueeyes1 -- how do I do that?
catsman -- I'm lucky thay my house is all one level
catsman -- you have local MDA chapter?
craftycarolyn57 -- me too catsman
blueeyes1 -- I called them and they said they don't know of any programs
catsman -- to see about other ALS cases & create intrest at local level
blueeyes1 -- yes wew thought about buiiding one that was handicapped accessible but not sure if that will cost more
blueeyes1 -- mm one als clinic is in chicago an hour away and the other is in indianapolis 2 to 3 hours away for indiana
catsman -- it really needs to be accessible to ease the incline, pushingup hill is tough
craftycarolyn57 -- a shower for handicap cost me between 12.000 and 15.000 and thats for us to put it in
catsman -- talk to the folks at the Tribune about a human interest story
blueeyes1 -- Maybe I should email extreme makeover home edition LOL
craftycarolyn57 -- yea up hill will weaken your muscle's
catsman -- absolutely, Jen,do it
catsman -- what will it hurt?
blueeyes1 -- I used to work for Sears not sure if they wwould...I don't have a video camera :)
craftycarolyn57 -- hey i did that Jen
catsman -- so, you don't work now
craftycarolyn57 -- haven't heard from them yet
blueeyes1 -- you did carolyn?
blueeyes1 -- Nope havin't work since aug '04
catsman -- if a bus full of people showed up at my house I'd freak
craftycarolyn57 -- yep i did it on two home makeovers program
craftycarolyn57 -- i would too but i would love it
catsman -- i figure that's like winning the lotto
blueeyes1 -- yep that would be better to have help like that...of course lotto would be good too
blueeyes1 -- wewll all hubby is home..have to greet him...take care and thanx for the great chat...I will not be here next chat...as I will be on vacation
catsman -- any kind of extra cash would be great
catsman -- have fun, jen
craftycarolyn57 -- tc Jen n Gb
blueeyes1 -- AZ here we come...cubs traning camp and a sox game
craftycarolyn57 -- injoy vac
catsman -- sounds like fun
blueeyes1 -- ty and hugs both
catsman -- you goin thru Texas?
blueeyes1 -- {goodbye blueeyes1}
craftycarolyn57 -- i know that there has tobe more help for people like us
craftycarolyn57 -- we just got to find it
catsman -- I'm searching all the time
catsman -- I think the govt has some if we can just find it
craftycarolyn57 -- {welcome craftycarolyn57}
craftycarolyn57 -- dang it botted me out
craftycarolyn57 -- booted
catsman -- it happens
craftycarolyn57 -- first time for me ...lol
catsman -- where are you located, carolyn?
craftycarolyn57 -- groves
craftycarolyn57 -- close to port arthur
craftycarolyn57 -- i am 90 miles east of houston
catsman -- not far from houston, huh?
craftycarolyn57 -- how far r u from there
craftycarolyn57 -- it take me 2 hours to get to clinic
catsman -- 600 miles
craftycarolyn57 -- u live looooong way
catsman -- yup, can almost drive it in our sleep
catsman -- part of drug study so go once a month
craftycarolyn57 -- how long u been going there
craftycarolyn57 -- dang i only go every 3 months
catsman -- first one was August 05
catsman -- Clinic ever 3 months, drug study monthly
craftycarolyn57 -- wow what drug are u taking
catsman -- Minocycline
craftycarolyn57 -- when did u start that drug
craftycarolyn57 -- and do u find it to helps u
catsman -- October 05 & I think maybe it's helped with increased motion in left hand but will know more by study end
craftycarolyn57 -- thats great
craftycarolyn57 -- i sure hope it does
catsman -- I'm hopin' if it does work, it'll spread all over
craftycarolyn57 -- i would toohope they find help for us all
catsman -- would like to try a minocycline/COQ10/creatine cocktail to see if it has any effect
craftycarolyn57 -- well i take cq-10
catsman -- i would if it we're forbidden by drug study
craftycarolyn57 -- wow i guess they just want to see what the other drug alone
catsman -- Do you take any meal supplements, like ensure?
catsman -- yeah thats it
craftycarolyn57 -- no not yet
craftycarolyn57 -- dou
catsman -- I lost 10 lbs beteen clinic visits & was told to start them, gained 10 lbs back.
craftycarolyn57 -- well i did not lose i gained.....lol so i dont need it
craftycarolyn57 -- glad u gained it back
catsman -- thats good, what was your FVC?
craftycarolyn57 -- FVC?
catsman -- YOUR BREATHING
craftycarolyn57 -- they said it was good and they are going to do the test next time i go
catsman -- I had to go on Bi-PAP in December
craftycarolyn57 -- i went on it last month
catsman -- do you like it?
craftycarolyn57 -- they said the more i use it the better i would be yes i do
craftycarolyn57 -- so when i read are watch tv i use it
catsman -- I sleep better & wake more refreshed
catsman -- you use the air pillows?
craftycarolyn57 -- me too ut it kinda gets in my way sometimes when i am sleeping and try to turn over
catsman -- I have the full face mask & can't see the tv or read
craftycarolyn57 -- no i sleep in a special made recliner
craftycarolyn57 -- i have the nose peace
craftycarolyn57 -- it is so much better to me