03.13.2006
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

db273 -- {welcome db273}
libby_j -- {welcome libby_j}
db273 -- hi libby
libby_j -- hi i logged into the caregiver room by mistake and am saying hi there too!
db273 -- oh multitasking
aidens_mom -- {welcome aidens_mom}
libby_j -- Yes!
db273 -- hi kara
libby_j -- hello aidens mom..Kara!
db273 -- how are you doing kara
aidens_mom -- Hi all!
aidens_mom -- a bit slow here...eating while typing. how is everyone? I've been out of touch. Any news?
db273 -- both of you are multitasking
libby_j -- I know! I apologise!
aidens_mom -- me too!
db273 -- now i am kind of glancing at dr phil cause my wife is watching so am too
aidens_mom -- okay, we'e all multi-tasking now! :–)
db273 -- i have no news
db273 -- yes
aidens_mom -- hey, I got an exercise bike and I'm feeling just fantsatic!
aidens_mom -- sometimes no news is good news
libby_j -- My exercise bike has a puncture!
db273 -- has it made you tired
libby_j -- Its not hada workout for a long time
dannyd -- {welcome dannyd}
aidens_mom -- a puncture? mine dows not havetires. it's stationary.
db273 -- hi danny
dannyd -- Hi folks sorry I'm late
dannyd -- How is everyone today?
db273 -- i am good and you danny
aidens_mom -- no, I'm starting slow. started with 15 min. per day, now up to 17 min. per day. Will work up to 30 min. I LOVE LOVE LOVE it!
libby_j -- End of a busy day here but ok
aidens_mom -- hi Danny!
libby_j -- LOL glutton for punishment Kara!
dannyd -- I'mc doing well I just finished my bike riding
libby_j -- I saw a bike like that that has a tv screen in front with a cyclist pedaling in time with you
db273 -- glad you like it kara
aidens_mom -- great Danny! doesn't the bike make you feel alive!
libby_j -- the scenery changes with settings, hills flat etc
dannyd -- It's wonderful
dannyd -- I do 9 miles a day
aidens_mom -- if the cyclist on the screen is cute, I may pedal faster to catch up with him! ;–)
db273 -- if i get the urge to bike ride will go lay down to it goes away
libby_j -- LOL good idea !!
libby_j -- 9 miles is fantastic
aidens_mom -- wow! that's fantastic Danny! I'm almost at 3. I pedal at a fairly slow pace as my legs were really out of shape from being stuck inside all winter.
aidens_mom -- about 50 RPMs is my average
dannyd -- Takes me between 30-35 minutes
aidens_mom -- how long have you been doing that Danny?
dannyd -- about a year
libby_j -- I used to swimn a mile in 40mins a day
dannyd -- I started at 6 miles in 30 minutes
aidens_mom -- I bet you are in good shape from that routine. Good going!
dannyd -- I would love to be able to go swimming
aidens_mom -- wow Libby! do you get to swim now?
aidens_mom -- me too Danny! I want a pool!
libby_j -- NO :o(
libby_j -- Begged the physio to go with me but she says im too weak esp upper body
aidens_mom -- sorry Libby
db273 -- get a noodle libby i did and just floated around pool
libby_j -- I can go to sleep so relaxed tho thinking of how it made me feel so still capture the moment
aidens_mom -- maybe she is just afraid. If you feel you can do it (with someone to spot you), maybe you can find someone to help. My docs highly recommend swimming.
libby_j -- I will keep nagging her Richard
aidens_mom -- she, meaing the phiso
aidens_mom -- physio
libby_j -- I have wanted to do it al along it just always felt so goo to body and soul
db273 -- or a ski vest
aidens_mom -- yes, I know exactly what you mean Libby! ther is nothing like being in the water.
db273 -- haven't been in years and now have the urge to go swim this year
aidens_mom -- where would you go swim Dick?
db273 -- we have pool at our condo
aidens_mom -- oh, you should go!
aidens_mom -- can I come too? ;–)
db273 -- yes can fall in pool just can't fall out
db273 -- sure
libby_j -- Not so weightless getting out
aidens_mom -- no steps to climb ou? can you do steps?
db273 -- will see if swim suit has any moth holes in i9t
aidens_mom -- LOL
libby_j -- LOL Richard!
db273 -- yes steps with railing and someone would have to bring wheelchair back over
libby_j -- no waterproof w/c. pity
db273 -- i can do steps but will be some effort
libby_j -- I think id need a hoist
aidens_mom -- oh. in a slippery pool may not be so good.
libby_j -- to get out
db273 -- i am going now regardless
aidens_mom -- i guess i am blessed to still be ambulatory. my lungs would give out before my legs did during any activity.
aidens_mom -- go for it Dick! you can do it!
db273 -- not enough power to swim anymore but will get something to keep me afloat
libby_j -- going in not too bad
aidens_mom -- oh, just to bob around in the water would do you good!
libby_j -- ite the weightlessness its so liberating
db273 -- yes coming out is what worries pat so quit going
aidens_mom -- yes, love the chance to not have to fight gravity!
db273 -- yes legs move so good in pool
libby_j -- If i was rich enough id go live in the International space station!
aidens_mom -- we'd all make good astronauts!
aidens_mom -- Aiden's waking up. gotta go. great to chat with everyone. Happy biking ans swimming!
db273 -- bye kara
aidens_mom -- bye. hugs!
aidens_mom -- {goodbye aidens_mom}
libby_j -- missed her!
db273 -- danny have you heard anything from susan
dannyd -- Libby how's your son doing?
dannyd -- Susan is struggling
db273 -- thank you danny
catsman -- {welcome catsman}
dannyd -- Last email I got from her she said she was losing ground fast
db273 -- sad
db273 -- hi brian
libby_j -- Hi danny have a foot in caregivers chat also
dannyd -- Hi Brian
catsman -- hey y'all, need address for susan
libby_j -- Sorry to hear about Susan
dannyd -- I know it's very depressing
libby_j -- I love to snailmail her
catsman -- wanna send her something
db273 -- how long from scotland libby does it take
libby_j -- a week maybe...
catsman -- ty
db273 -- same as me when in korea
db273 -- things have not changed
libby_j -- Id phone but it would be too much for her not to be able to respond
libby_j -- i have had some things get there in 3 days
db273 -- that was the cheese
db273 -- lol
catsman -- mmmmmm, cheese
db273 -- food again brian
catsman -- always food, Dick
libby_j -- Oh no.. I had to step out of carer room, tired arms and feet!!
db273 -- my vice
libby_j -- We had pizza tonight
catsman -- what kind, libby?
db273 -- yes libby will be helping out us soon
db273 -- was it good
dannyd -- What's your favorite kind of pizza?
catsman -- pizza someone else buys
db273 -- the one in front of me
dannyd -- free pizza. very tasty
catsman -- the best
libby_j -- sorry youngest dragged me off to the kitchen where else!
libby_j -- Well sam hada tuna pizza, Dan had SAteak pineapple and sweetcorn
dannyd -- tuna pizza??????????????
catsman -- huh? Tuna?
dannyd -- That's wrong on sooooooo many levels
libby_j -- Me and hubby had pepperoni passion!
libby_j -- He loves fish and pizza crust!!
libby_j -- anchovies are to salty
dannyd -- any fish on pizza is just plain nasty
catsman -- Do you need pizza supplies, Libby? We can send a CARE package
libby_j -- I know and we have to watch him eat it with gusto!
emmalee -- {welcome emmalee}
db273 -- is he pregnant
dannyd -- Hi emma
db273 -- hi emmalee
libby_j -- Its getting authntic pepperoni thats difficult here
dannyd -- good one Dick
catsman -- hi emmalee
emmalee -- hello
libby_j -- LOL Dick, will ask him tomorrow!
libby_j -- hello emma
dannyd -- How are you today emma?
emmalee -- not to bad and you
dannyd -- I'm doing great
dannyd -- Where you from?
dannyd -- I'm just north of Austin, Texas
catsman -- breathin' on a regular basis
emmalee -- oklahoma
dannyd -- Are you a PALS
catsman -- "where the wind comes rushin' down the plains"
emmalee -- lol
emmalee -- yes i am
dannyd -- when were you dx'd?
dannyd -- I was 12/2000
emmalee -- in dec
dannyd -- Brian how are those wildfires going up by you?
catsman -- doesn't make for a very merry christmas
dannyd -- Your still pretty new to this
catsman -- raging, yesterday but under control today
emmalee -- no it didnt
db273 -- i was dx in dec too and we did not tell our kids till after christmass
emmalee -- yes i am
catsman -- 05/05, just before school was out
dannyd -- Did you go to an ALS clinic?
emmalee -- no just a neuro
catsman -- OKC just opened a new MDA clinic
emmalee -- really that is 3 hrs away
catsman -- close by then
dannyd -- You should try the clinic
dannyd -- they have a different approach to care
libby_j -- {welcome libby_j}
catsman -- you'll fall in love with them
emmalee -- look intoit
catsman -- wb, libby
libby_j -- sorry lret the laptop go and lost connection
catsman -- Just read it yesterday
dannyd -- they use what they call a multi disciplinary approach
libby_j -- I think I better call it a night. Nice to visit with you all. Take care
db273 -- bye libby
catsman -- bye libby
dannyd -- you'll be able to see a PT, OT, RT, Dietician, Social Worker, Neuro, Pulmonologist
libby_j -- {goodbye libby_j}
dannyd -- good night libby
emmalee -- really
catsman -- More Md's than you can shake a stick at
dannyd -- well worth the trip
dannyd -- they usually follow up with you every 3 months
catsman -- absolutely, I drive 1200 miles round trip for my clinic
emmalee -- i will hace to check it out
dannyd -- it's like one stop shopping
emmalee -- sorry typos
catsman -- all typos are immediately forgiven
db273 -- i am a big typo
db273 -- got to go too so talk at you all later
catsman -- see ya dick
db273 -- {goodbye db273}
dannyd -- wonder where Jeff is
catsman -- I gotta go, I'll see y'all later
catsman -- {goodbye catsman}
dannyd -- take care
dannyd -- emma what was your first symptom
emmalee -- dragging of the left foot
dannyd -- how long did it take to get dx'd?
pammy28 -- {welcome pammy28}
dannyd -- Hi pammy
redcountry -- {welcome redcountry}
dannyd -- Hi red
redcountry -- hi danny
redcountry -- looks like a busy day
dannyd -- How are you today
dannyd -- not for a while
redcountry -- home with steve today, his back was really bothering him this am
redcountry -- how was the week end
dannyd -- did some spring cleaning
dannyd -- cleaned out the garage
redcountry -- i tried, hey your remodel start yet?
redcountry -- we have contractors coming this week to start
dannyd -- not yet still getting bids for the foundation and plumbing
redcountry -- you are flipping your bedroom arnt you
redcountry -- .
redcountry -- we have a very small home
dannyd -- yes bedroom from upstairs to down and adding a new bath wheelchair accessible
redcountry -- are you coming back tonite
dannyd -- Not sure
redcountry -- cement work starts in 3 weeks
dannyd -- will you be here
redcountry -- im gonna try, i keep getting in on the end of things
redcountry -- what time does the room close today
dannyd -- 15 past the hour
dannyd -- 10 minutes
redcountry -- did you find any help with your home modifications
dannyd -- my brother and brother in law and a good friend will do most or it
redcountry -- thats great
redcountry -- steve is really dreading the remodel
dannyd -- still pretty expensive
redcountry -- yes, we will probably have all our savings gone by fall
dannyd -- only saving grace is it's all tax dedutible for next year
redcountry -- we would have to build on to our house to make the bath accessable
dannyd -- that's what we're doing
redcountry -- yes and all the miles for dr appt. really add up
redcountry -- you are a very brave man,
dannyd -- why?
redcountry -- remodeling makes a house so dirty
redcountry -- well,, would that be your only bath, or do you have more
dannyd -- it will be all outside until we break through the doorway
dannyd -- we have 21/2 baths now
dannyd -- so this will make 31/2
redcountry -- we have one bath ( one little one)
dannyd -- building an entirely new bath with rollin shower
redcountry -- i am jealous, dont know yet what we will do