02.06.2006
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

db273 -- {welcome db273}
dannyd -- {welcome dannyd}
db273 -- hi danny
dannyd -- Hi Dick How are you?
db273 -- i am glad
dannyd -- About what?
db273 -- about life
db273 -- a
db273 -- and you
dannyd -- I'm doing well
dannyd -- Did you watch the superbowl?
db273 -- going to rebootmy keyboard is bad so
db273 -- no
db273 -- {goodbye db273}
db273 -- {welcome db273}
db273 -- now i got it working again
db273 -- wireless goes out at stranges times
aidens_mom -- {welcome aidens_mom}
aidens_mom -- {welcome aidens_mom}
aidens_mom -- Hi all!
dannyd -- Hi Kara
db273 -- my wife does not like football unless packers play
db273 -- hi kara
dannyd -- We have football mania here
dannyd -- How's life treating you Kara?
aidens_mom -- I'm not a football fan so missed it all. who won? lots of friends fans of steelers.
aidens_mom -- life is good Danny. and you?
dannyd -- Steelers
dannyd -- I'm doing good
aidens_mom -- good
dannyd -- Anything new and exciting?
dannyd -- Have you guys been reading the Yahoo board
db273 -- yes living with als
dannyd -- What did you think of the ER show?
aidens_mom -- hmmm...well...not so much new here. waiting, waiting, waiting for warm spring to arrive!
db273 -- it was good woods did a good job
aidens_mom -- I thought Woods and the whole crew at NBC did a grerat job. covered a lot of the disease aspects.
aidens_mom -- great that is
agreys -- {welcome agreys}
aidens_mom -- and was positive overall.
aidens_mom -- Susan!
db273 -- hi susan
agreys -- Hi, Danny, Dick and Kara. How are y'all?
db273 -- i 'm good
libby_j -- {welcome libby_j}
agreys -- Wunnerful. =)
db273 -- hi libby
libby_j -- Good evening from Scotland everyone
aidens_mom -- NBC also had guests with ALS on various news shows following the episode. people need to know more abpout ALS. I'm very glad that NBC is talking about it and that ER prodcuers/writers dedicated a whole episode to it and did lots of preshow promotion.
agreys -- Hi, Libby! Sorry I missed yesterday.
libby_j -- Hey, no worries Susan
dannyd -- I thought Woods nailed the role, but wasn't thrilled with the story line
aidens_mom -- great Susan. I'm feeding Aiden and typing. Ugh! expect m any typos
libby_j -- There was good company ;o)
agreys -- Just so long as Aiden doesn't splash me with sauce. =)
agreys -- Yes, I saw. Bless you all.
aidens_mom -- LOL Susan!
libby_j -- Expect typos from me and there is no sauce involved! lol
agreys -- I'm with you on ER, Danny. Put me in a blue funk.
agreys -- Getting delayed screen here.
aidens_mom -- I didn't get the funk.
aidens_mom -- LOL Libby!
dannyd -- I can't imagine someone that far into the disease that doesn't have all their wishes laid out
db273 -- my trouble yesterday
dannyd -- That lady on the yahoo board ranting about the POA and how they should have never done the trach
agreys -- We'll have to complain to Al Gore
aidens_mom -- I think they had to fudge it much in order to keep it under an hour and do the story.
agreys -- I think she saw the show from a narrow perspective
agreys -- Right, Kara
aidens_mom -- I think the importance of the episode was not how exact the details were. they showed much insight into the disease..how it affects one's life, adn the fact that Bush won't allow new stem cell lines, etc.
agreys -- I wish they'd stressed that more, but...
dannyd -- They can't just take her word that she is POA. There has to be a document.
agreys -- Yes. That surprised me since he'd been treated therre before.
dannyd -- Suppose the guy is a millionaire and she's looking to go after his estate. She says let him go because she's in his will
aidens_mom -- I feel foolish..I whould know this. what is POA?
libby_j -- {welcome libby_j}
dannyd -- Power of Attorney
agreys -- Power of Atty
db273 -- wb libby
aidens_mom -- well, if they knew he did not want to be on life support, there would not have been a story...not the way they wanted to do it anyway.
aidens_mom -- again, tehy hvae to fudge some, right?
libby_j -- had to refresh page
agreys -- Libby, tell us all what's going on with you
libby_j -- Well mixed news today, the dna for sma was negative
aidens_mom -- what else is the differential diagnosis Libby?
agreys -- That means what for you?
libby_j -- Its quite distressing really as I am getting worse all the time and it feels like its all going to be too late. The Professor said we plough on for a dx and MOtor Neuron, als are on the list, altho md of some form may still be it
agreys -- And, as you progress, what are they doing to help, suggesting?
libby_j -- Well im on vpap now and that has been SO helpful altho my chest muscles are getting weaker
libby_j -- They are repeating a EMG on April 6
agreys -- For how many hours a day are you on VPAP?
libby_j -- The Prof is admitting me around the same time to have gher coleague have a look and I presume more repeat tests
aidens_mom -- have they considered Myastenia Gravis, or otehr treatable diseases? I was really hoping I had that instead of ALS.
agreys -- Me, too, Kara. =(
libby_j -- I have always thought it was MG and it was an initial dx but not proven, my own gp is sayiing she wonders if its Ms
agreys -- My thoughts and prayers are with you, Libby.
aidens_mom -- Susan, tehre are times I still wonder if they got the dianosis right...you know like what if I do have MG??? It's unsettling, so I try not to go tehre.
libby_j -- Limb Girdle MD was the main dx of late but the prof said no
aidens_mom -- did you have spinal tap to RO MS Libby?
libby_j -- I have begged for a tensilon test and hope they might yet try
agreys -- At some point in the future, they'll have all kinds of MND dxes.
libby_j -- No and I asked the neuro to do it but he said why and when I tolld him to ro ms he said he didnt think I had it with 2 neg brain mris
aidens_mom -- MRI cannot ro MS. MS patients can have "normal" MRIs. I know of at least one who does.
agreys -- Wonder if the inability to pin this down drives them as crazy as it does us.
aidens_mom -- You must have spinal tap to RO MS and cancers. You msut have EMG
aidens_mom -- You must have spinal tap to RO MS and cancers. You msut have EMG
aidens_mom -- shwoing at least two affected msucle groups
db273 -- hope so
libby_j -- I know. I do feel the Prof will get to the core of it but I just hope soon enough
agreys -- Me, too, Libby
aidens_mom -- and you must have lots of bllodwork. are you going to an ALS specialist? if not, I recommend you do.
libby_j -- I dont know about any of you but my decline is perceptible esp in my torso/chest
agreys -- Mine is working hard on my upper body and back.
libby_j -- This Prof is one of the worlds best in NM disease and its taken me 2 years to meet her
agreys -- I'm now officially a short question mark.
aidens_mom -- I'm all upper..above the hips
agreys -- How close are you geographically to this Prof?
libby_j -- I have had a bad cold anit has knocked the wind from my sails and I dont think I will get it back
libby_j -- Mine is mostly above hips and worst in arms
aidens_mom -- oh no Susan! I think you are a bold and prominent Exclamation Point! ;-)
libby_j -- 90 miles and same for neuro
agreys -- Kara, if you saw me...
agreys -- Well, inhale chicken soup vapors and hang in
aidens_mom -- My visualization of you is tall and proud and beautiful! and full of life!
libby_j -- Do you guys have olbas oil?
agreys -- Well, send me a picture, Kara. LOL!!
aidens_mom -- Susan, you inspire me, so don't go downhill now :-)
agreys -- olbas oil?
aidens_mom -- Okday, Susan, will wrok on a sketch.
agreys -- Kara, you're so sweet!
libby_j -- Its menthol, great for clearing stuufy sinuses
agreys -- Thanks!
aidens_mom -- do you jsut inhale it Libby?
agreys -- Never heard of it. Just have Vick's salve.
libby_j -- few drops on a tissue near your head
agreys -- Kara, I've never hit 5'3" in my life
aidens_mom -- good to know
libby_j -- http://www.olbas.com/forms/Form_processor/Forms/olbasoil.cgi
aidens_mom -- tall in spirit Susan
agreys -- Thanks, Libby!!
libby_j -- lol SUsan, Im 5.4 but think I may have lost an inch
agreys -- John Wayne never had nothin' on me.
aidens_mom -- LOL!
agreys -- Probably in the back of your cabinet somewhere, Libby.
libby_j -- my 13 year old is 5.8 and towers above me
agreys -- Is your husband tall, Libby? Or the milkman?
agreys -- tee hee
aidens_mom -- what do you all do for sever muslce spasms? I have one in upper chesxst, right side, fronmt and back. excruciating to sneeze, cough, breathe deep. right arm painful too. QUinine not really helpful and made me tired and gave nausea
libby_j -- in fact on sat he had this haevy cold and fainted into my arms and we both went down like a pack of cards
aidens_mom -- ahve had it for 2 weeks. got so bad last monday night was up all night could not lie down, mvoing exrucuiating.
agreys -- My gosh!
aidens_mom -- I actually took prednisone in desparation and it seemed to help a bit.
agreys -- Some folks take Baclofen
dannyd -- Do you have any muscle relaxers
libby_j -- does marth or cool compress help?
aidens_mom -- new PCP said only would prescribe pain meds.
libby_j -- marth=warmth
aidens_mom -- heat helps, but it won't go away.
dannyd -- Why only pain meds?
agreys -- Yes, I'm with Danny!
aidens_mom -- can't take flexiral (sp?) as it gave bad side affects in past.
agreys -- There are others.
dannyd -- Do you have Valium?
aidens_mom -- PCP would not give diazapam (I know I've tolerated that well in past) becasue he said ccould cause respiratory depression.
agreys -- Or Xanax?
aidens_mom -- do you use it Danny?
libby_j -- I have a persistent ach of my chest muscles even at rest but i think due to coughing and sneezing. Its a sign to me I have over worked them and I dont usually get much recovery when the ach goes and it can take months
dannyd -- I use Baclofen and Zanaflex
aidens_mom -- I ahve a lot of trouble with side affects. very sensitive. diazapam never bothered me.
dannyd -- You need to find a new primary
libby_j -- Vecause of lack of dx I can use next to nothing
aidens_mom -- I think baclofen might affec tme like flexiral did
aidens_mom -- ugh
dannyd -- Diazepam won't cause resp depression orally
aidens_mom -- yeah, that was the new on! LOL! slim pickin's around here.
dannyd -- unless you drink alcohol with it
agreys -- How long are you on VPAP daily, Libby?
aidens_mom -- oh gosh! I don't drink a drop!
agreys -- Kara, I'm the same with side effects.
aidens_mom -- I'll ask my ALS neruo to write RX for diazapam (valiu,m). Thanks Danny.
agreys -- Naproxen sodium OTC helps me.
libby_j -- I am on it from bedtime til i get up around 7-8 hours
aidens_mom -- Sussan, I can't tolerate NSAIDS. Naprosen is NSAID. :-(
agreys -- Whoops...be right back
dannyd -- What do NSAIDS do to you?
aidens_mom -- severe stomach pain...like it's being devoured!
aidens_mom -- Naproxen/Naprosen especially.
dannyd -- You need to take them with food
dannyd -- that's a common side effect
aidens_mom -- nope, food doesn't help and some people just cna't tolerate them.
aidens_mom -- not teh kind of pain it gave me...that's not common.
pigiron308 -- {welcome pigiron308}
aidens_mom -- I can't even take OTC NSAID. I have always had to stick with Tylenol
dannyd -- That's unusual since you can toleratr Prednisone
pigiron308 -- hi all
dannyd -- Hi Jim
db273 -- hi jim
aidens_mom -- well, predinsone is a differenbt type of drug. it's steroid. I took only 3 and toelrated them, but did not take more as I had enoguh relief I clould not justify more steroid.
aidens_mom -- I don't know what it is about NSAIDS, but I've tried lots and can't do them.
libby_j -- do any of you find you are senitive to antibiotics?
db273 -- i can't do sulfur
libby_j -- Hello pigiron, didnt see you
aidens_mom -- I foun d out teh hard way taht floroquinolones greatly ecaserbated my weakness...greatly!
dannyd -- I don't have a problem with anything that I know of
pigiron308 -- Hi
aidens_mom -- Tequin is the one that had. Never again.
libby_j -- I get increased weakness also.
aidens_mom -- Danny is a rock! and you've had ALS a long time right Danny? what are your secrets?
dannyd -- Dx'd 5 yrs ago and symptoms from 97
aidens_mom -- can you take pennicilin Libby?
aidens_mom -- no wheels Ddanny?
libby_j -- I am on amoxycillin and flucloxacillin right now
libby_j -- for chest and sinus infection
aidens_mom -- Aiden and I are going to shop online for a drum kit for him now! be back later.
db273 -- bye kara
libby_j -- byebye
aidens_mom -- {goodbye aidens_mom}
rachelann -- {welcome rachelann}
db273 -- hi
libby_j -- hello rachelann
rachelann -- HI
dannyd -- Hi Rachelann
libby_j -- I dont think we have met? But I may just be having a tired moment!
dannyd -- Where are you from Rachel
libby_j -- I am from Scotland and this is one of the few chats I can make it to. I have an as yet un-dx form of MD or MND
agreys -- Hi, Rachelann
agreys -- Sorry I was gone longer than I thought.
agreys -- Let's just say I fell in. =)
libby_j -- Uts getting on for 10pm now so I need to make a move. Susan how funny!
db273 -- lol
blueeyes1 -- {welcome blueeyes1}
agreys -- Libby, I always think of you!
blueeyes1 -- hi all sorry I'm late just got back from docs
db273 -- bye libby
agreys -- Hey, Jen!
db273 -- hi jen
libby_j -- Hi Blue I am just about to leave
libby_j -- glad to see you
agreys -- Libby, rest well and often, and don't give up.
blueeyes1 -- ok nice to see you they wrote me a prescription for electric wheel chair I'm sad
libby_j -- Thanks Susan, its apreciated much
blueeyes1 -- take care libby hugs and nice to see you too
libby_j -- Dont set me off! But thanks for the encouragement
libby_j -- Night night
agreys -- Don't be sad, Jen. Plan on races with goggles and a coon tail.
agreys -- Night, Libby
libby_j -- {goodbye libby_j}
blueeyes1 -- I'm worried how we're going to transport it..I think it's because my breathing is catching up with my wawlking
blueeyes1 -- and I don't know what to suggest or get
agreys -- As a transport vehicle?
blueeyes1 -- and what kind of electric or power wheel chair
db273 -- see if you can qualify for a free ride from transport bus company
agreys -- Great suggestion, Dick!
agreys -- I prefer my Permobil, but Dick's got a different kind he likes.
db273 -- they do that here if can't get to bus line cost 2 bucks a ride
db273 -- invacare is fine does all right for me
agreys -- Do it here, too, but it takes some time for city to OK.
blueeyes1 -- ok I think I knoww where to call for that
blueeyes1 -- shuld I get everything ahead of time or just get what I need now and add
blueeyes1 -- later
db273 -- yes some red tape and have to play the game
blueeyes1 -- sorry forgot to ask how yo
blueeyes1 -- were doing
agreys -- Get as many of the bells and whistles as you can. MDA will pay $2,000 towards your chair, too.
db273 -- get all you can cause it might be one time deal
agreys -- Yeppers
db273 -- good
db273 -- rachel you still here
db273 -- do you have als rachel
agreys -- Good here, too. You, Jen?
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- {welcome blueeyes1}
agreys -- Re-hi, Jen
agreys -- Jen, sit. Stay!
blueeyes1 -- I got kicked out
db273 -- right
blueeyes1 -- I have hmo
db273 -- it was only a shove
agreys -- Dick, watch the elbows!!
db273 -- check with them and see how they pay and how much
blueeyes1 -- lol dick...I want to stay walking too
db273 -- hockey instinct
agreys -- MDA will still help if HMO drops the ball
db273 -- just be careful about mentioning walking
blueeyes1 -- ok I will call my group and find out
blueeyes1 -- what should I do dick..they want to get it because of my breathing
db273 -- my hmo thought if i could walk to bathroom and kitchen table i was all right
agreys -- Your ALS Clinic should help you get a ltr of medical necessity from your dr.
db273 -- well am not an expert but could mention when you walk much you fall down
blueeyes1 -- I can get that...I'll write it to the doctor and you're right dick
db273 -- put a few bandades on your forhead lol
db273 -- it is not funny about how this all a big game sometimes
blueeyes1 -- oh if they only could see me walk and breathe at the same time
agreys -- Yeah! The game of quality of life. =(
db273 -- right they are not in your shoes
agreys -- Is it possible to do that?
agreys -- Walking and breathing??
blueeyes1 -- not for me much :)LOL
agreys -- Me either.
agreys -- Sorry...brb again
blueeyes1 -- ok
db273 -- ok
db273 -- jen a wheelchair is nice think of it as a machine that saves you from getting tired and more staying power
blueeyes1 -- will my legs suffer from using it?
db273 -- now you might have to think about steps too as that is first thing i had to give up
blueeyes1 -- that's what they said..we have to think of something soon
db273 -- no go to bathroom and kitchen table with walker or whatever it takes to get there
db273 -- it will make you lazy though
db273 -- now i have to force myself to do things without it but i did do supper last night and dishes today from it though don't get as tired
blueeyes1 -- dick I alaready am...not ecause I wawnt to be but because o my breathing
db273 -- well give in and start using it as soon as you can and see if you feel much better
db273 -- see if you can get an loaner in the meantime if you can
agreys -- I was amazed how much more I could do when I got my chair
blueeyes1 -- ok I will do they come to me to fit me for it..they said with the HMO they have to fit me for the right oone and send paperwork back to the doctor to ok it
db273 -- your comfort is so important and rest is great benefit
agreys -- Sorry...6yo came home from school.
blueeyes1 -- maybe my breathing won't feel so bad
db273 -- ok susan
agreys -- That's what they did for me too, Jen
db273 -- yes jen i would think so
agreys -- You'll notice more energy
catsman -- {welcome catsman}
agreys -- Hey, Brian
db273 -- hi brian
blueeyes1 -- hi braian
catsman -- chair? you got the chair?
catsman -- hey!!!!!
dannyd -- Hey Brian
agreys -- Better than the noose
db273 -- yes or life without parole
blueeyes1 -- so it's going to be ahwhile to get it
catsman -- I reckon, thats right
agreys -- That all depends on your dr, dme and hmo
db273 -- flash them your big smile jen
ragingbear -- {welcome ragingbear}
agreys -- But if there's one in the loan closet in the meantime, so much the better
catsman -- BS/BC has been denying DME in Texas lately
db273 -- hi jeff
agreys -- Hey, Jeff!
ragingbear -- Hi everyone!
blueeyes1 -- ok I will do all o that there are only two companies that they work with
blueeyes1 -- hi Jeff nice write up
catsman -- What up, Jeff
agreys -- Why, Brian?
ragingbear -- How's it going?
catsman -- I wish I knew
agreys -- Good, Jeff. You?
ragingbear -- Thank you Jen
ragingbear -- I am great!
agreys -- Don't get me started on ins. cos. practicing medicine!
catsman -- I want a chair but will most likly have to move Heaven & earth to get it
agreys -- That's just not right
db273 -- does your mda have a loaner brian
blueeyes1 -- ok guys you are going to help me with this one..I will be consulting you..this is a big step for me to swalloww
ragingbear -- The name of the new website livingwithals.net
catsman -- not the local chapter
agreys -- I know, Jen. But take the leap of faith and ride
db273 -- ask away jen whenever
agreys -- COOL, Jeff!!
catsman -- I'm tired of not being able to move myself from locale to locale
ragingbear -- it should be really up by later this week
catsman -- I feel like Jen but dang sittin' still all day...
db273 -- yes you are always out of breath on wed brian
agreys -- Can your DME lobby on your behalf, Brian?
agreys -- Sittin' still? Are you kdding???
catsman -- as soon as I get them involved
catsman -- lol, Dick
agreys -- Why, you'll have more fun banging into walls and over toes
catsman -- I wat to be mobile, again
catsman -- even if it's only to go outside
ragingbear -- what insurance is balking?
agreys -- Get a horn that says: EXCUUUSE ME
db273 -- we want you too to be mobile again
catsman -- BS/BC in my case
db273 -- half the bathrooms in ky are outside
agreys -- BC/BS of TX, Jeff
catsman -- only half?
agreys -- Men always use the great outdoors
db273 -- yes
dannyd -- Brian have you asked Appel's staff to get involved?
db273 -- a tree is a tree
catsman -- every chance we get
agreys -- Jeff, that'll be an easy web site to remember
catsman -- the original potty area, outdoors
catsman -- I will on Friday, Danny
dannyd -- I'm sure Peggy or one of the PT/OT's would be able to get the ball rolling
ragingbear -- medicare pays and then the MDA will also help. I bet they want to wait until they are secondary to Medicare
agreys -- Hey, that's my shoe!!
db273 -- oh sorry
ragingbear -- I hope so Susan
catsman -- sorry, Susan, was distracted by your beauty
agreys -- You are a scoundrel.
agreys -- ;-)
catsman -- our local chapter are ready & willing to get involved
agreys -- Great. Has BC/BS denied you coverage, Brian?
catsman -- Why, Madame, I believe you are flirting!
catsman -- no, they are my primary (only) insurance right now
agreys -- You're smarter than I thought.
agreys -- Group or individual coverage?
catsman -- group
gjlscals -- {welcome gjlscals}
db273 -- hi gayle
agreys -- Hi, Gayle
gjlscals -- Hi Guys - how is everyone today?
catsman -- welcome, Gayle
agreys -- How you doing, Gayle?
catsman -- stillin takin' in air
agreys -- Good here, thanks
gjlscals -- I am doing okay - good times and bad times - never sure what the trigger will be to start me crying.
db273 -- supper time so bye all take care
ragingbear -- get Medicare on board and they will become very helpful Brian
gjlscals -- Susan - How are you doing at your friends now?
agreys -- Take care, Dick
db273 -- {goodbye db273}
catsman -- sometimes it's the silliest things, isn't it?
ragingbear -- goodbye Dick have a great week!
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- Mann I got kicked out AGAIN! ;0
catsman -- It takes so long to get in to see the SSA
gjlscals -- Absolutely - like an ad on TV but it is getting a little easier each day.
catsman -- i HATE WHEN THAT HAPPENS, jEN
agreys -- Gayle, it's wonderful here. Thanks.
dannyd -- Fill out all SSDI paperwork online
agreys -- Brian, apply on line.
gjlscals -- Susan - that's good to hear. I want to be sure you are well taken care of - can't lose our chiffon lady yet!
catsman -- filled out SSI but not the SSDI
agreys -- Gayle, you're doing so well.
agreys -- Thank you.
gjlscals -- Brian - I have to agree - I applied for George online (be sure to go overboard on providing requested info) and had no problems and did not have to go in - the interview was done over the phone.
dannyd -- Why not disability paperwork?
agreys -- Wish I'd applied on line.
gjlscals -- Thank you, Susan - I guess I am just a hard-headed Californian under it all!
gjlscals -- I do as much as I can online anymore - saves time and energy.
catsman -- I'm gonna take another swing at it
blueeyes1 -- I had to get my state rep and als assoc director of local chapter involved
gjlscals -- Like I said, be sure to go overboard on providing the requested info. I did and I had the SS rep say he had never seen a disability request approved so quickly.
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- last time
catsman -- if it's this difficult to get a chair, how hard will it be to get a vent?
gjlscals -- Of course, it also helps when the state rep presents at the local ALS symposium. You know his staff knows the regs pretty well and if they don't you have a great contact.
gjlscals -- I would think getting a vent would be easier - it is a medical procedure and so probably more standard according to Medicare.
dannyd -- I filled out the stuff online and was contacted about 2-3 months later scheduled an appt to go in and sit with the caseworker and was there maybe an hour. Done
catsman -- then I'll go back at it again
ragingbear -- it's not nearly as hard or the same since it's medically necessary to live
blueeyes1 -- on medicare or regular insurance brian?
catsman -- how low should your FVC be to go on vent?
blueeyes1 -- never mind sorry my computer is bad
catsman -- gonna try gettin' the medicare
blueeyes1 -- mine was 45 % for me it was not the number just that I felt like I was slowwly suffocating
gjlscals -- If you qualify for SSDI then Medicare begins immediately when the SSDI does - no waiting period.
catsman -- if I try too much physically I feel like I'm gonna die
blueeyes1 -- I was to the point I would eat and go to sleep for the day
catsman -- I'm good after eating
catsman -- use my bi-pap all night
blueeyes1 -- what is your fvc?
dannyd -- There's no magic number for the vent
catsman -- I don't know right at this minute
dannyd -- Someone on LWALS said their's was 16%
ragingbear -- It is more dependant on your CO2 level than FVC.
catsman -- I'll see Friday at clinic
dannyd -- It's gonna be based on your overall presentation
dannyd -- If you get SOB real easy with minimal exertion they will probably increase you BiPAP to during the day first
catsman -- don't know if I've ever had CO2 checked
catsman -- don't wanna use it during the day
dannyd -- Why?
catsman -- can't see with my mask on
catsman -- can't read, watch TV
dannyd -- What about changing to nasal pillows or a different mask
catsman -- I figure they'll tell me to go to daily use this time around
blueeyes1 -- the doc changed my settings and then he said 24/7 and said no because it can cause a whole on your nose..so he did the trach for all around security
ragingbear -- Personally I wouldn't wait until your on bi-pap 24/7 since I wish I had done it 3 to 6 months sooner
catsman -- Dr. Rodriguez will know what to do, he's a great RT
gjlscals -- You do have to watch for the pressure sore on the nose - George developed one from his BiPAP mask.
catsman -- my sore comes & goes
blueeyes1 -- mine wewnt so fast jeff
catsman -- figure I'll have a callus before much longer
ragingbear -- you would remember if you had your CO2 checked Brian
blueeyes1 -- I wish he would have not waited b ut one day said 24/7 that night called and send trach and vent
catsman -- what do they do, Jeff?
dannyd -- They have to do an arterial blood gas
catsman -- sounds like fun, can't wait
dannyd -- usually a needle in the artery in your wrist
catsman -- my idea of a good time
ragingbear -- and it hurts like he__!!!
dannyd -- bring beer and make a party of it
agreys -- Owiee!
gjlscals -- Oh yeah, just tons of fun, especially if they don't hit the vein the first time and they usually don't.
catsman -- y'all are just makin' my day
agreys -- Sorry. Jeff just LOVES those C02 tests
gjlscals -- Oh well, have to inflict a little pain on someone since the Seahawks lost the Super Bowl yesterday.
blueeyes1 -- I asked for numbing medication first
catsman -- that they did
agreys -- Gave it away. But I rooted for them anyway.
blueeyes1 -- but the last time they did it I didn't feel any pain...that wwas trach day
ragingbear -- no not vein, artery which is surrounded by pain nerves and by bones!
catsman -- i'll get drunk first, then let them check it
agreys -- Sounds like a plan, Brian
agreys -- I'll pour
gjlscals -- Susan - I knew I could count on you. Oh well, look out for us next year!
catsman -- who wants to oin me?
blueeyes1 -- drinking or blood gas
gjlscals -- I do - think we can get a party going???
agreys -- I'll only pour from a safe distance if we're talking CO2 tests
catsman -- drinking, established nobody wants to do the blood gas
agreys -- Gayle, we can ALWAYS get a party going!
blueeyes1 -- I was told sometimes blood gases are bad only when you're really bad...because mine wewre normal
dannyd -- I'm in
agreys -- Jeff will volunteer for any blood gas tests.
agreys -- Nudge-nudge/Wink-wink
catsman -- I don't have to worry about normal, havn't been normal for years
catsman -- Jeff can show off his new chair
agreys -- No fun being normal all the time
agreys -- Yes! YAY, Jeff!!!!
ragingbear -- I want to be there for your blood gas draw Susan if not I want pictures and video!
catsman -- not that I've noticed, Susan
gjlscals -- Who wants to be normal - that would take all the fun out of it!
catsman -- too much screaming in my case
agreys -- Video with no sound because your ears couldn't take it
gjlscals -- Okay, video it is but be sure to get good shots of all the chiffon flying!
catsman -- all the crying & wimpering would be too much
agreys -- Talk about a blood bath!
catsman -- lol
gjlscals -- Now that is a mental image I didn't need right after lunch.
agreys -- Here's a complimentary flight bag, Gayle
ragingbear -- no I want Dolby surround sound!
catsman -- kinda graphic, huh?
dannyd -- Paging Dr. Mengele Paging Dr. Mengele Brian needs a blood gas
blueeyes1 -- they told me I am not a normal als patient
catsman -- get Quinten Tarentino to direct it
agreys -- JEFF!! I'm going to ask Permobil to send you an unbalanced chawir if you keep it up
catsman -- lol, danny
agreys -- 1-800-PERMOBL. Hello?
ragingbear -- LOL
dannyd -- Chat is gonna end in 5 minutes. Is anybody gonna be on tonight?
agreys -- Danny, if we get one more blood gas test, we get a free keg. Can we count you in?
catsman -- you could hear him coming, clump clump, clump clump
gjlscals -- Just be sure to turn your chair off before they try to do the blood draw. Wouldn't want you running off with a tech attached to your arm!
dannyd -- for the keg only
blueeyes1 -- I might be Im tired from all the visits and have to go back breathing doc in morning...I will try
blueeyes1 -- by all thank you for your help
ragingbear -- I bet you faint before they do it since we have built it up for you
agreys -- I will try too. HONEST.
gjlscals -- I will try to make it. What time is it again???
catsman -- I'll try myself
agreys -- I never faint when there's pain ahead. Wouldn't want to miss it
dannyd -- 8-10 Central time
catsman -- I need to be tied up first
blueeyes1 -- bye bye
ragingbear -- have a GREAT week Jen!
blueeyes1 -- {goodbye blueeyes1}
gjlscals -- So that would be 6-8 Pacific time?
dannyd -- Yes
agreys -- Danny, we'll get you the empty. Everyone, take care.
catsman -- y'all have a good week if I don't see ya
gjlscals -- Bye everyone!
gjlscals -- {goodbye gjlscals}
catsman -- {goodbye catsman}
ragingbear -- everyone have a great week!
dannyd -- good luck Friday Brian
agreys -- Yes, best of luck