02.20.2006
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- {goodbye blueeyes1}
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- {goodbye blueeyes1}
mr.-edwards -- {welcome mr.-edwards}
dannyd -- {welcome dannyd}
dannyd -- Hi everyone sorry I'm late
mr.-edwards -- dannyd, what have you been up to today anything exciting?
dannyd -- I just finished my exercise bike
dannyd -- I do 9 miles a day
dannyd -- How are you today?
cm-cherryhillnj -- {welcome cm-cherryhillnj}
mr.-edwards -- dannyd-that sounds like work! How long does that take you? I am ok;just the us- ual cramps, headache etc.
cm-cherryhillnj -- Hi everyone. My name is Chris Moore and I work for the MDA. I thought I would stop by and say hello
dannyd -- Hi cm
dannyd -- Hi Chris
cm-cherryhillnj -- Hi Danny
dannyd -- It takes me 35-40 minutes
mr.-edwards -- cm - good afternoon, sir.
dannyd -- What do you do for MDA?
cm-cherryhillnj -- This is my first time that I have entered a Chat at MDA. How many people are usually in here?
cm-cherryhillnj -- I am a District Director.
dannyd -- welcome
libby_j -- {welcome libby_j}
mr.-edwards -- cm- this is my 2nd day; it sounds as if you are a VIP!!!
dannyd -- How is Jersey today? Still snowy
libby_j -- hello
dannyd -- Hi libby
cm-cherryhillnj -- Mr. Edwards, no need to call me sir. That's like puting an elevator in an outhouse - it jujst doesn't belong. LOLWelcome Libby
cm-cherryhillnj -- No longer snowy - a few 60 degree days and poof, it's all gone
dannyd -- That's nice, makes it easier to get around
dannyd -- I miss the snow being down here in Texas
cm-cherryhillnj -- VIP? Nah. I just happen to LOVE what I do
dannyd -- I grew up on Long Island
cm-cherryhillnj -- Where abouts in Texas? Mr. Edwards, where are you from?
dannyd -- I'm just north of Austin
cm-cherryhillnj -- Long Island? WOW, a big change from there. HEY LIBBY, how are you today?
cm-cherryhillnj -- Danny, I have friends in Texarkana. Is that close to you?
libby_j -- Pretty worn out but glad to make it in here..its 8.30 here in Scotland
mr.-edwards -- I am from Florida; went to HS in N.J. college in Michigan, now back in Fla.
cm-cherryhillnj -- Libby, SCOTLAND???? WOW
libby_j -- I used to live in michigan many moons ago
libby_j -- WE are tuxked away in the SW corner near the border with England
dannyd -- Texarkana is 5 hours or so
cm-cherryhillnj -- Mr. Edwards, you are ALL over the place. I have family in Flint Michigan. Lovely area. What a shame that Ford is laying off so much. Flint has been getting bad for years. This will make that area SO MUCH worse.
libby_j -- I am in the process of dx, I have some form of md/mnd
libby_j -- I went to Cook Elementary school in Flint
cm-cherryhillnj -- Libby, do you have MDA offices in Scotland?
cm-cherryhillnj -- Danny, do you currently work with an MDA office in Texas?
cm-cherryhillnj -- Mr. Edwards, what had you moving all around the US?
libby_j -- WE have the equivilent Muscukar Dystrophy Campaingn. I see MDC neurologists
libby_j -- sorry typping bad am tired
dannyd -- I've been helping raise funds here in Austin and when I go to the clinic in Houston I've done a couple of videos that they show to the Firefighters
cm-cherryhillnj -- Danny, that's SO COOL!
cm-cherryhillnj -- Libby, DON'T worry about the typing. I don't think we are grading papers today. LOL
jeannast -- {welcome jeannast}
libby_j -- I admire those who work tirelessly like that
cm-cherryhillnj -- Welcome Jeannast!
libby_j -- Thanx cm :o) Hi Jean
dannyd -- My youngest son he's 11 was a team captain for the StridenRide event we had 2 weeks ago. He helped raise $3000.00
dannyd -- Hi Jean
jeannast -- Thanks. How is everyone today. Has anyone heard anything from Susan?
libby_j -- You guys are the salt of ther earth..
cm-cherryhillnj -- Danny, SO AWESOME!
mr.-edwards -- cm- how deep has re search traveled in to the cell or would you know that?
dannyd -- Last I heard Susan was trying to get used to her ERICA device and was having trouble keeping her head up. Her neck was getting weak
cm-cherryhillnj -- Mr. Edwards, it's kind of interesting working for MDA. We hear so much about research efforts, but little on the results unless there are breakthroughs. I do know that the cell research process has been said to be a large key, but I haven't seen much more than that yet.
cm-cherryhillnj -- Hey Danny, what is an ERICA device? That is something new to me.
dannyd -- It is an eyegaze device for communication
dannyd -- Like the one James Woods used on ER
cm-cherryhillnj -- Danny, oh, I have seen them before. I didn't know that was the name for them. Yes, I saw it on ER as well.
jeannast -- I am worried about Susan. She was one of the first ones I met around the internet as well as you Danny. I hope she gets better.
libby_j -- I guess it would take getting used to
cm-cherryhillnj -- I imagine that would.
dannyd -- Chris are you guys doing the Shamrock campaign now
cm-cherryhillnj -- I lost my father-in-law to MD
jeannast -- I got measured for my Permobil last week. I guess it takes a while to get them. I really need it. It is getting hard to get around on a scooter.
cm-cherryhillnj -- Yes we are. I really like that campaign. It costs very little and usually more than 95% of the money raised goes back to clients.
dannyd -- Permobile is supposed to be the cadillac of chairs
libby_j -- Jean I havea balder and iots made my quality of life life so much better
cm-cherryhillnj -- Sorry if my typing got slower. My 5 day old son just woke up.
dannyd -- I've heard some folks get it less than a month and others take several
dannyd -- Congrats on the new edition
cm-cherryhillnj -- Libby, what's the cost? I might have some ideas to help.
jeannast -- I have heard it is an outstanding machine. I am supposed to get the C500. I decided if I can only get one every 5 years that I would try for the best.
dannyd -- Jean you need to stay on top of the DME company
libby_j -- VERY expensive CM £16000
jeannast -- I will do that Danny.
libby_j -- A charity bought it for me
cm-cherryhillnj -- thanks
jeannast -- Libby, what's that translate to in US $?
libby_j -- it took 7 weeks to arrive from ordering
libby_j -- $25000+
cm-cherryhillnj -- translates to 27,800 us dollars
jeannast -- I think that is about the same as the Permobil.
libby_j -- The best thing for me about it is the tilt in space as I have little upper body strength
cm-cherryhillnj -- Libby, that's a good price. 7 weeks is a bit long, but I am not sure about sending to Scotland. Sorry I can't offer some better help.
jeannast -- My problem is just the opposite. I can no longer stand or walk. I still have upper body strength.
libby_j -- thanks anyhow. The other thing is and adapted vehicle to make me an independent drive ie: powered cahir lift ettc a soooo expensive
jeannast -- Oops, there goes my doorbell. I have to go. I will be back if you all are still here later
libby_j -- I struggle to hold up a newspaper but ccan lean on my arms using the bonee stength if that makes sense
jeannast -- {goodbye jeannast}
cm-cherryhillnj -- So, as an employee of MDA, I am curious: What can MDA do different or better for all of you?
blueeyes1 -- {welcome blueeyes1}
cm-cherryhillnj -- Welcome blueeyes
blueeyes1 -- hi cm
dannyd -- Hi Jen
cm-cherryhillnj -- Libby, I know exactly what you mean.
blueeyes1 -- make it easier to figure out what programs are available financially
cm-cherryhillnj -- Blueeyes, what do you mean?
blueeyes1 -- I just ordered a power wheel chair and it will be here soon is their funding available for the house to be accessible?
cm-cherryhillnj -- Jen, how much is the chair?
blueeyes1 -- well got my powwer wheel chair ordered all..it's an invacare tdx
blueeyes1 -- 25,000
dannyd -- Chris does MDA have funds to modify the home?
cm-cherryhillnj -- Are there other insurances helping cover part of the chair?
blueeyes1 -- but i still have private insurance HMO so it looks like they will pay 100 percent
blueeyes1 -- I am just having problems if I have it in the house, we have a tri-level and cacn't afford to move...
blueeyes1 -- and now we have to find a van with a lift that we can afford..insruance doesn't cover that one :)
cm-cherryhillnj -- Danny, currently we do not offer that. BUT, I just learned of a company in /nj that prides some cost effective ideas on how to do that. PLUS, there are some community organizations that will help provide funding for remodelling like that.
blueeyes1 -- hmm any ideas for indiana
blueeyes1 -- danny howw are things with you?
cm-cherryhillnj -- Jen, I know what you mean. Try contacting a car dealer or even petiton to a manufacturer. I have heard of some making donations or "extreme" discounts to make the purchase and retrofit more cost effective
dannyd -- I'm doing great
blueeyes1 -- hmm good idea..I wil try that
pigiron308 -- {welcome pigiron308}
dannyd -- I'm in the planning stage of moving the bedroom from up to down and building a new bathroom with a rollin shower
dannyd -- Hi Jim
blueeyes1 -- can't wait for my chair to get her with the cushion...my butt and back is hurting so bad...they said there is more muscle wasting
blueeyes1 -- hi Jim
dannyd -- I don't need it yet but want to have it in place for later
pigiron308 -- Hi Danny and all
blueeyes1 -- yup wwe always have to think ahead
cm-cherryhillnj -- For Indiana? hmmm, I am holding a seminar in the summer about the retrofitting of homes for power chairs. I have a few cntractors coming who are offering some ideas. I don't have the details yet, but you could try contacting contractors for home remodelling.
cm-cherryhillnj -- Hi Jim, I'm new. My name is Chris and I work for the MDA
blueeyes1 -- ok, I am not sure hwo to handle the stairs in the house, other than to move a bed and my equipment downstairs...but the problem is I can't get the power chair out the laundry room door because of the turning rdius...that's wherre wewre going to have to figure something out...I think it's going t go in the garage for now
blueeyes1 -- I told my daughter I chose metallic pink for my chair so no one will sit in it
pigiron308 -- Hi Chris good to have you here
blueeyes1 -- how are you doing jim?
cm-cherryhillnj -- You know, this is what drives me nuts! Why is it that a :standard doorway" is 32" and the width of most chairs is 32"+? Someone wasn't thinking!
pigiron308 -- fine ty and you?
cm-cherryhillnj -- Thanks Jim
blueeyes1 -- wewll the width o my chair is 25" but there is a concrete wall ahead and the stairs to my left if I were to gout that way
blueeyes1 -- doing good, tired more and my butt hurts and I have to get another afo for other leg..just about covers it LOL
pigiron308 -- Chris, I dropped in on the MDA caregivers chat two weeks ago
cm-cherryhillnj -- Jim, that's cool. This is my first chat with MDA.
cm-cherryhillnj -- what is an afo?
blueeyes1 -- I chat with the caregivers for an hour and come over here
blueeyes1 -- leg brace
pigiron308 -- They were very hospitable.
blueeyes1 -- did you chat with kup?
cm-cherryhillnj -- ah! It looks like one thing we miss as MDA employees is the right terminology - at times
blueeyes1 -- it's ok..I didn't know until I had to
libby_j -- hear ya cm on door ways we had to place the bathroom door
pigiron308 -- I don't remember who was in the dhat
pigiron308 -- chat
pigiron308 -- Chris, I take it you are in Cherry Hill NJ
cm-cherryhillnj -- I know of a few contractors that would do retrfit work pro bono, but maybe only once a year. I wonder if the effort in your area(s) would yield the same.
cm-cherryhillnj -- Jim, yes. I live close to there and work for MDA in Cherry Hill
libby_j -- We paid full price as is the way here Chris :o(
cm-cherryhillnj -- That stinks Jen
pigiron308 -- ah I spent too much time in AC. I live in Arlington Virginia
cm-cherryhillnj -- Everytime I've been to AC, I do the same. Thus, only been there once in the past 5 years. LOL Just can't afford it!
pigiron308 -- I heard that ;0)
libby_j -- I need to get ready for bed here so will say goodnight
dannyd -- Good night libby
cm-cherryhillnj -- night Libby
pigiron308 -- gn libby
libby_j -- {goodbye libby_j}
cm-cherryhillnj -- I have to run too. Would you all be ok if i joined you again another time?
blueeyes1 -- I guess I wish there wewre more resources available that wew didn't have to spend hours digging for
blueeyes1 -- sure that will be ok cm
pigiron308 -- yes please do
blueeyes1 -- jim or dan do you use a power chair?
cm-cherryhillnj -- Blue, I WISH that too! If I cfind anything, I will try and pass it along!
dannyd -- Anytime Chris
pigiron308 -- yes
dannyd -- I'm still mobile with my Rollator walker
cm-cherryhillnj -- Thank you all! Have a good night!
blueeyes1 -- ok thank you cm
blueeyes1 -- you too
blueeyes1 -- they told me to use the power chair for long distances
dannyd -- See ya Chris
pigiron308 -- ty u2 Chris
pigiron308 -- I have to use my chair for any distance ;o)
pigiron308 -- I am on a vent
blueeyes1 -- I use vent at night and sometimes during the day...
pigiron308 -- I was like that about a year ago
blueeyes1 -- did your breathing seem to go first?
pigiron308 -- I deflat the cuff during the day but stay on the vent
pigiron308 -- deflate
pigiron308 -- yes
pigiron308 -- Location: Arlington, Virginia. I experienced gradual onset from 1999. Stopped breathing in the hospital's emergency waiting room May 17, 2001. I was awarded a tracheotomy tube May 21, 2001. PEG tube inserted early June 2001. I was in a medically induced coma from May 17, thru May 22, 2001. I was in the ICU for three weeks and in the vent unit for two weeks. I had my cuffed tracheotomy tube replaced with a cuffless in March 2002. PEG removed April 2002. Back on the cuffed trach tube June 23, 2005.----Jim
blueeyes1 -- it went from my back, to my legs to my breathing and that's what's the worst...my breathig is catching up with my wwalking...you're a trooper
pigiron308 -- strange disease I still have back and shoulder muscles
blueeyes1 -- yes and hardest on the kids
pigiron308 -- we are all on the same battlefield--each with different wounds
blueeyes1 -- here is my journal if you want to check it out..it has pictures too http://blueeyes33.livejournal.com/
pigiron308 -- I will do that this evening
blueeyes1 -- well thanx for the chat, and take care adnd hugs danny and jim I must lie down now..take care
dannyd -- Take care Jen
pigiron308 -- Be well jen
blueeyes1 -- you too ty
blueeyes1 -- {goodbye blueeyes1}
pigiron308 -- Well Danny I think I will work a little more on my website. I saw where a vote on S471 might come in May
dannyd -- Talk to you soon
pigiron308 -- yep, oh did you get that artificial I sent to you?
pigiron308 -- artical
pigiron308 -- this word prediction program is driving me nuts
maple-man -- {welcome maple-man}
maple-man -- how you doing?
dannyd -- Hi maple man
maple-man -- anyone on board?
dannyd -- Yes I got the article thanks
maple-man -- where are you located?
dannyd -- I'm just north of Austin Texas
dannyd -- where are you?
maple-man -- northeast corner of Vermont about 40 mi south of the border.
dannyd -- little cold?
maple-man -- not bad today-in the 20's. this weekend it was -15 two mornings. not good als weather.
dannyd -- I grew up on Long Island miss the snow a little
dannyd -- mostly the change of seasons
dannyd -- Now I stiffen up something awful in the cold
maple-man -- can't beat the fall for colors.
dannyd -- Do you have ALS?
maple-man -- yes, i was diagnosed in nov 99.
dannyd -- I was 12/2000
dannyd -- How's your mobility?
maple-man -- i have lost most of strength in my arms and shoulders. still breaathing w/o help and my legs appear to be making it. how about you?
dannyd -- I'm progressing very slowly
dannyd -- I haven't lost any strength
dannyd -- But I have significant spasticity and no balance at all
dannyd -- breathing is about 70%
dannyd -- fine motor skills are becoming a little challenging
maple-man -- i still drive and feed myself. need help getting my pants on.are you in a wheelchair?
mr.-edwards -- I am back!
maple-man -- greetings mr edwards
dannyd -- No I'm still able to drive also
dannyd -- I use a Rollator walker
dannyd -- Welcome back Mr Ed
maple-man -- i understand the fine motor skills. they are more than a challenge-they flew t he coo.
maple-man -- i am 70
dannyd -- I'm 47
maple-man -- yes, i am located in the northeast corner of VT. what about you?
dannyd -- central Texas just north of Austin
dannyd -- Do you go to an ALS clinic?
maple-man -- yes, in burlington, VT they also have one at Dartmouth' but i do not care for the leadership. it stinks.
dannyd -- I go to Methodist hospital in Houston
dannyd -- Fantastic folks
maple-man -- are you happy with it? how often do you go?
dannyd -- I'm going every 4 months
dannyd -- the usual is 3 months
dannyd -- I have been in the Avanir drug study
dannyd -- it is a trial drug for emotional lability
dannyd -- I think it will get approval pretty soon
maple-man -- i go every six, however i see my als guy every four months. a great guy.yopour test sounds interesting. i have been in three.
dannyd -- being in the study the follow up is every 4 months so I didn't want to make the extra trip back a month after every visit
maple-man -- how far o you hae to go?
dannyd -- it is about 180 miles
dannyd -- just about 3 hrs
mr.-edwards -- I see it is approach ing 6pm so I will stop now and return at the next time I believe is 9pm???
dannyd -- right
maple-man -- good trip. have about 75 mi.
maple-man -- nice chatting with you. catch you later.
mr.-edwards -- {goodbye mr.-edwards}
dannyd -- Do you have family close to you?
mr.-edwards -- {welcome mr.-edwards}
maple-man -- i have my wife. my four kids are in VA,NM, CA and germany. this is my second shot at marriage. oly been married8 yrs.
mr.-edwards -- {goodbye mr.-edwards}
dannyd -- The chat will close automatically at 15 past the hour
dannyd -- I want to wish everyone a good week and say we'll be back later tonight