05.08.2006
02:45 PM - 06:15 PM EDT
ALSchat / LivingwithALS

db273 -- {welcome db273}
db273 -- 3 pm est
dannyd -- {welcome dannyd}
dannyd -- Hi Dick
db273 -- hi hi danny
db273 -- did you get the url i sent this morning
dannyd -- Not yet
db273 -- dang you should have by now
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- hey dick and danny
dannyd -- Hi Jen
db273 -- hi jen
dannyd -- Did you sent it to the cox.net email?
db273 -- don't know danny send me yours private message ok
dannyd -- So Jen how is Indiana today?
blueeyes1 -- doing ok, breathing is catching up trying to get downstairs to get in chair to go out
db273 -- did you get a trailer yet jen
dannyd -- Where are you off to?
mr.-edwards -- {welcome mr.-edwards}
db273 -- hi mr edwards
blueeyes1 -- nope dick..wondering if it would be worth it now..I am trying to travel as much this year but it's too hard to get oxygen and vent to travel
mr.-edwards -- hi there db
db273 -- did you go to portland me yet jen
blueeyes1 -- hey ed
blueeyes1 -- leaving on the 19th for a week so excited
db273 -- good jen
mr.-edwards -- hello Jen
blueeyes1 -- if there's one thing I could have back is my breathing LOL
blueeyes1 -- hey ed how ya feeling?
mr.-edwards -- ok thanks Jen
dannyd -- Mr ed did you present your thesis?
mr.-edwards -- I have been told to file it away in the trash.
db273 -- why mr edwards
blueeyes1 -- mr edwards what's going on with it?
blueeyes1 -- anyone do anything interesting this weekend?
blueeyes1 -- ok I gott give you guys a laugh
db273 -- ok jen
blueeyes1 -- I went shopping at target was looking for some t-shirts...but in the mean time the aisles were not wide enough for the scooter they had so I took two rows of clothes wiwth me
blueeyes1 -- I couldn't stop laughing at myself people thought I was crazy
db273 -- turn in your drivers license please
blueeyes1 -- hubby said that too
db273 -- a car that can't swim and a scooter that attracts clothes
blueeyes1 -- ohhhh you'll never forget that one...ohh and I got hit on in Wal-mart.I thought that was funny
blueeyes1 -- hubby just laughs now and waits for whats next
dannyd -- brb gotta get the boy from school
db273 -- ok danny
blueeyes1 -- so I was thinking of setting up a side car on pwc for killer and putting some glasses on and a hat
blueeyes1 -- what I really need is a cocmputer table and a beer cup holder
blueeyes1 -- hey ed where did ya go?
db273 -- i have those jen my son and brother in law made them for me
blueeyes1 -- I got tickets to see sox vs cubs july 2nd in chicago...lesturner day..and theres a before party
db273 -- dang you jen making me jealous
blueeyes1 -- well if we didn't have this awful disease I woldn't be going...they normally are 150 bucks a piece
blueeyes1 -- http://www.lesturnerals.org/wrigleyfield.htm
db273 -- yes it is a awful way to get in the game
blueeyes1 -- hey but they are going to choose one of use to throw out first pitch
db273 -- hope it is you jen
blueeyes1 -- me 2...I decided I have 2 hats and two shirts..so when ones winning I wear that teams hat and shirt LOL
blueeyes1 -- dick how do I find those pieces for my power chair? can they be made for it?
db273 -- yes jen i will send you pictures of my rig
blueeyes1 -- ok I just don't want to spend a lot as we already ahve for this dang chair
db273 -- the thing is i had to buy an extra power holder for the left side of my invacare arm rest to put the pipe in
db273 -- it was 50 bucks
db273 -- i went to walgreens and got a cup holder and a dowel and hooked them up for cup holder
blueeyes1 -- that's the ticket..I'm constantly spilling myself
blueeyes1 -- what invacare do you hav?
db273 -- that was the cheap part the tray was more home made in a plant on the side by my brother inlaw
db273 -- let me look
blueeyes1 -- thats cool
lag -- {welcome lag}
blueeyes1 -- hello lag
blueeyes1 -- are you new?
lag -- Hello Jen
db273 -- storm dxt 3 jen
lag -- I'm really good - had a great few days.
db273 -- hi lag
db273 -- great lag
blueeyes1 -- that's awesome
lag -- Hi Dick how are you?
blueeyes1 -- I have a storm tdx 5
db273 -- i am good
lag -- Good to hear.
lag -- Are we talking about wheelchairs
db273 -- mine is probably a tdx too sat down and forgot
blueeyes1 -- yes I was asking how to add on a beer cup and a computer tray
db273 -- yes
blueeyes1 -- it's ok
lag -- I saw a wheelchair called a Wrangler yesterday at the ALS walk
blueeyes1 -- what did it look like?
db273 -- that is good lag see one you liked
lag -- It looked like a 4wheel motorcycle but it was really huge.
lag -- I don't think it's pratical, but it sure looked nice - I could do some racing with that thing.
blueeyes1 -- hmm mine weighs 300lbs befor vent...hehehe I said I was going to soup mine up
lag -- Well - then it might be the same thing.
blueeyes1 -- power chair on steriods
lag -- First time I did the walk - used a manual wheelchair
blueeyes1 -- did it go well for you?
dannyd -- hi
blueeyes1 -- wb danny
lag -- What are the pros and cons of the wheelchair you have
lag -- It went really well - I raised $13,000.00 and 28 people came to walk with us.
blueeyes1 -- hmm well I had to really adjust to mine..the furniture jumped out at me and so did the dogs tail
blueeyes1 -- wow awesome! Great job
lag -- Thanks - I'm really happy and proud.
db273 -- so far i like mine all right had a jazzy first with a better seat i thought but have got used to it now
db273 -- yes laura great job makes my 400 look like pennies
blueeyes1 -- I would like better lumbar support
lag -- I am shopping around, so when the time comes I know what to get. How does the medicare thing work for wheelchairs?
lag -- Dick, 400 is 400 more than they had before - nothing to sneeze at. Anyway, I was a fundraiser when I worked.
blueeyes1 -- Wwell I got mine on private insurance knowing I was switching to a pwc..problem is in my state they only cover certain ones
lag -- What state is that?
blueeyes1 -- Indiana
lag -- It amazes me that everyone doesn't get the same allowance from Medicare.
db273 -- laura you got more than the whole drive got they only got just over 12000
blueeyes1 -- I think it depends with the provider that you go through
blueeyes1 -- the company
lag -- Wow, but I'm here in NY and we have a ton of people and other resources. I am still trying to get more from companies I worked with.
lag -- So different wheelchair manufacturers get different amounts covered?
blueeyes1 -- I'm just trying to get our local chapters als bracelets in the area starbucks here
lag -- I've read on these chats that the Invacare is the best - is that true?
lag -- Good idea!
db273 -- no i think permobile is
blueeyes1 -- no amounts are he same..what I am saying is like my provider was mobility systems..if I were to cover it under mediare I would have a different chair to pick from than on regular private insurance
lag -- I put a notice in our church bulletin and raised around 500. from that plus 8 walkers.
lag -- Oh - I understand now aout the provider.
blueeyes1 -- I l
blueeyes1 -- I love my invacare...but I wish I had better back support...for the price
blueeyes1 -- and I think they should clean and vacuum and drive me places for the price hehe
db273 -- lol
lag -- They should cook too, and have a drop for the toilet!
blueeyes1 -- I like that one Laura..they say I have transfer armrests but still haven't figured that one out
db273 -- wow all the reasons i got married
lag -- Typical male response....
blueeyes1 -- hehehe...I just know how to spin in circles...hang upside down and chase the dog really fast
db273 -- of course
lag -- I would rather drive one than be pushed...I get so nervous
lag -- What are the costs of the chairs.
blueeyes1 -- oh yeah my sisters let me go on a hill and then they came running for me
db273 -- do you take the leg rests off jen i do makes it easier to get around just make sure you tilt back so your feet don't drag
lag -- My husband is great, but starts talking to someone walkingw with him and has me chopping at peoples ancles.
blueeyes1 -- hmm haven't tried that...I like to rest my feet up but it doesn't go when I have it tilted to high
db273 -- yes laura if it steep hill go down backwards
blueeyes1 -- hehehe my sisters did that they start talking and i'm inside clothes racks
lag -- Yeah - exactly - I had my hand in his face all day yesterday - telling him to slow up
catsman -- {welcome catsman}
db273 -- hi brian
blueeyes1 -- hehehe I just can't transport the chair yet...but all the guy neighbors coming out to check out the suspension and stuff on it...like I really care
catsman -- hey, dick
lag -- Hi Brian - I don;t know if we've met - I'm Laura
blueeyes1 -- hi brian
catsman -- hi, y'all
db273 -- front seat driver
catsman -- hi laura
lag -- absolutely! Always have been front, back, etc.
db273 -- lol
catsman -- I drive my wife crazy, only driving I do
blueeyes1 -- anybody ever flip their chair..I almost did and tthe guy said it couldn't be done
db273 -- oh we have speed bumps here and almost flip out front wards
lag -- Catsman - Can I ask dX etc.
blueeyes1 -- oh yeah those darn speed bumps...I thought those were just for cars...they must have known you wwere coming dick
dannyd -- {welcome dannyd}
db273 -- well am going to to now so all take care
catsman -- Texas, dx 05/05, bi -pap 05
dannyd -- Had to restart the computer
blueeyes1 -- ok dick..had fun chatting take care
catsman -- see ya Dick
lag -- Bye Dick - talk to you soon - maye tonight
db273 -- {goodbye db273}
lag -- Bulbar or LimB?
catsman -- limb
catsman -- legs are goin' left hand & arm weakening
lag -- I try to keep track - so I can ask the right people the right questions.
blueeyes1 -- well guys I need some coffee and laura take care of yourself...make sure you try the chairs out laura..remember you'll have to sit in it for awhile
lag -- Thanks Jen - Talk to you again soon.
blueeyes1 -- {goodbye blueeyes1}
catsman -- ask me, anything. I'm not sshy
lag -- Ok - We were talking aout wheelchairs, best ones and prices.
catsman -- hear good things about Permobil
lag -- what do you have?
catsman -- I don't have one yet
lag -- Ok - you are still walking and talking - just need bipap at night?
catsman -- got my SSDI approved, my kids are approved, I got LTD from my employer, been a good week
lag -- I am walking with a limp on my right side - very slow walking - and my speech is getting worse.
catsman -- not much walking, talking ok except for volume, all night on bipap
lag -- I am waiting to hear from SSDI and I have LTD for awhile now.
catsman -- diaphram is weakening
lag -- That's good - do you feel as thought you've leveled off.
dannyd -- Laura what part of NY are you in?
lag -- i'm not sure about my diaphram - I need to see a pulminologist.
catsman -- except for the diaphram
lag -- I'm from staten Island, a suburb of New York City
dannyd -- I grew up on Long Island
dannyd -- Moved to TX in 1990
lag -- My son travels eveyday from Staten Island to Long Island, where abouts did you live?
dannyd -- Rockville Centre
lag -- I may be going to Dalles in Aug.
catsman -- since I have medacare, do I have to sign up for extra coverage?
dannyd -- Went to Oceanside High School
catsman -- hot in Dallas in August
dannyd -- Brian how did you clinic visit go?
dannyd -- Now I'm just north of Austin
lag -- Brian, I have the same question about additional coverage.
catsman -- very nice, FVC is down to 50%, but very nice
lag -- what is FVC
catsman -- theirs a new Neurogilst on staff
catsman -- forced vital capacity
lag -- Is that the breathing test?
catsman -- yup
lag -- Oh - I understand now.
catsman -- NIP was actually up
lag -- I have a clinic apt. 5/24
catsman -- I love my clinic vists
lag -- Danny - Are you still here.
lag -- I actually like them - the staff is really nice.
catsman -- like extended family
lag -- that's true- at the walk yesterday they treated me like a fmaily member - really great!
lag -- I guess we're lucky - some people have really bad clinic experiences.
catsman -- what brings you to Texas in August?
dannyd -- Laura do you go to Columbia
dannyd -- Who is the new neuro
lag -- No, actually I go to robert Wood Johnson in NJ - Dr. Belsh
catsman -- I don't remember her name, Danny. Reminds me of Dr Simpson
lag -- Brian - I'm going to a Wedding 8/4 - and my brother-in-law lives in Dalles - so we'll see him too
catsman -- cool, love Wedding receptions
dannyd -- I went and spoke to a group of firemen this morning
lag -- Me too - I love to dance, so it may be difficult but I'm determined to have a food time.
lag -- How the talk go Danny
dannyd -- They are getting ready to do the Fill the Boot for MDA
catsman -- nice, what was the speach on?
catsman -- Is it that time?
lag -- I'm sure you did us proud
dannyd -- Just some motivation to go out and collect as much as possible
catsman -- Lubbock did it for the first time in years last year
dannyd -- Telling them that the money they collect stays in central TX and helps local folks
lag -- We don't have that here.
catsman -- that usually increases donations
dannyd -- They relate better to me since I retired from Public Safety
catsman -- that's a plus
catsman -- I donate when I see them
catsman -- been doin it for years
lag -- Sorry - I have to go - cook dinner - talk to you soon - If I find out about the addl insurance, I'lllet you know.
lag -- Goodbye!
catsman -- bye laura
lag -- {goodbye lag}
dannyd -- Brian when do you go back to clinic?
catsman -- August 4
catsman -- you know Michael & Peggy Phillips from Louisana
dannyd -- I'll be there then
dannyd -- Yes
catsman -- he lost 20 lbs between clinics. thinking about getting a PEG
dannyd -- This Saturday Appel is speaking in San Antonio at the Hyatt
catsman -- he looked alright to me
dannyd -- Kelly and I are going to see him
catsman -- cool
dannyd -- It's a research update
catsman -- give him my regards
catsman -- hear Lipitor may have some benefits
dannyd -- Last month a few days after clinic I went back to Houston to talk to the 1st yr med students
dannyd -- There was 160 1st yr med students with the deer in the headlights look in the eyes
dannyd -- What did you hear about Lipitor?
catsman -- 1st years are like that
catsman -- I has some effect on neurons
catsman -- I had to start it for cholesterol & found out about a study being done
catsman -- havn't had a chance to research it yet
dannyd -- Did you read about the high fat diet study out of Netherlands
catsman -- missed it
dannyd -- folks had a 50% reduction in developing ALS
catsman -- high fat, can do tha
catsman -- any particular kinds of fat
catss -- {welcome catss}
dannyd -- Here is a link to the story http://www.medicinenet.com/script/main/art.asp?articlekey=61179
catss -- HELLO
dannyd -- Hi catss
catsman -- howdy
catss -- hi dannyd
catsman -- I'll check it out, imght need to modify my diet
dannyd -- where ya from catss?
catss -- manchester england.dannyd
catsman -- far piece from Texas
dannyd -- I have an Aunt in Manchester
catss -- oh
catss -- any one got mnd
dannyd -- We all have
catsman -- that we do
dannyd -- How long have you had it catss?
dannyd -- I was dx'd 12/2000
catss -- l have not goit it my partner got mnd
catss -- he only 42
catsman -- unfortunate,catss
catss -- why u say that
catsman -- unfortunate your partner has mnd
catsman -- & only 42
catsman -- no one should have it at any age
catss -- oh nohe on a vent now
catss -- why
dannyd -- How long has he had it?
catss -- why where hs it come from
catss -- neary 2 years this december
catss -- how ol are u both
dannyd -- I'm 47
catss -- and how far as it gone on u
catss -- dannyd thank u 4 talking to me..l only wish l could do somehing 2 help
catsman -- 47 as well. wheelchair for mobility, bi-pap for rest
catsman -- folks gotta split
catsman -- y'all have a great Monday
catsman -- bye y'all
catsman -- {goodbye catsman}
dannyd -- I'm still able to walk with a walker
dannyd -- I can still dress myself and drive
catss -- ok
dannyd -- I'm progressing very slow
catss -- where are u living
dannyd -- I live in Texas now
dannyd -- Grew up in New York
dannyd -- My mom was born in Liverpool
catss -- did u ever drink
dannyd -- Came to the USA in the 50's
catss -- oh liverpool
dannyd -- I still have an occasional beer
dannyd -- I did a fair amount in my younger days. Why?
catss -- how much
catss -- was it a lot
catss -- l amsure it the drink
catss -- because mark drink a lot very lot
catss -- be 4 he got mnd he stop it 4 6 years and got this
dannyd -- I have never heard of a corrollation between drinking and MND
catss -- just trying to find out is it the drink
dannyd -- I really only ever drank beer
catss -- so did he
dannyd -- I do a lot of research and I've never seen the 2 tied together
catss -- toxine
catss -- you sound a nice man
dannyd -- thank you
catss -- if it last thing l do l will find out one day why this happends
dannyd -- They have been trying to find that out for over 130 years
catss -- my name is susan
catss -- yes but this is 2006
dannyd -- I'm glad you stopped by today
catss -- well only found this chat thing on mnd
dannyd -- They have found out more in the last 10 years than the previous 120 combined
catss -- thanks
dannyd -- There is a caregivers chat an hour before this one
catss -- true and what about stem cells
dannyd -- we do this chat 4 times a week
catss -- good
dannyd -- stem cells are going to help a lot of people someday
catss -- the last time l was on a computer is window 95 ha
dannyd -- until they find out the cause of MND stem cells won't help us
catss -- you are welcome text me on my mobile..07865336749
catss -- why not the stem cell
dannyd -- because the same reason the body is killing motor neurons will kill the stem cells
dannyd -- you might see an improvement for a very short time and then they will also die
catss -- why
dannyd -- The MD in China that is doing the transplants has had patients that improved for a month or 2 and then the progression continued
catss -- this is not on
catss -- l never give up on this thing
catss -- as long as am here .l seen this mnd kiiing mark
dannyd -- It is hard to watch
catss -- lget so mad
catss -- yes
dannyd -- you and me both
catss -- you been so great talking to me
dannyd -- anytime
catss -- never give up
dannyd -- I know it's kind of late there
catss -- were is life were hope
catss -- ok
catss -- you want to go now l understand
dannyd -- The chat will automatically close in 10 minutes
catss -- but hang in there
catss -- win
dannyd -- The chats are Sundays and Mondays from 2pm till 5-pm Central US time
catss -- l let you go now so take care 4 now hope we will talk to you very soon...susan
dannyd -- Is it 11pm where you are?
catss -- ok
catss -- yes
dannyd -- So your time will be 8pm
catss -- tell u what l look like
catss -- long hair very blue eyes 49
catss -- nite nite friend
dannyd -- I have a handle bar moustache
dannyd -- good night
catss -- good
catss -- you are a good man nite nite
dannyd -- thanks talk to you soon
catss -- please nite
catss -- from me susan
catss -- bye
catss -- {goodbye catss}