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Kennedy's Disease Chat Transcript 02-4-2006
Host: Murray Williams
Murf: Morning Craig
craig_h: good morning Murf
Murf: Hows the weather in Virginia?
craig_h: finally was able to log in !!!
Murf: We all had to re-register for this one
craig_h: rainy ..... might snow later ..... how is Houston ?
Murf: 56 now and looks like it will be 70 and sunny today
craig_h: wanna trade?
Murf: no thanks anyway LOL
Murf: I've had my fill of snow and cold weather and thats why I live here now
craig_h: 2 weeks ago with Dr. D was interesting
Bruce entered the room.
Murf: It was a good chat... we have another good one with Paul Taylor coming on the 18th
coak entered the room.
craig_h: morning Bruce
Murf: Morning Bruce and John
craig_h: cool, I saw Dr. Taylor in August
coak: Hi everyone
craig_h: hi coak
Bruce: I am only on for a short while today. We have family coming up to celebrate two birthdays.
Murf: Me too the big 50
DavidJames entered the room.
Bruce: Oh ... to be 50 again
coak: Glad you all are still here to celebrate them
Bruce: Happy Birthday, Murray. Are your folks still in town
Murf: Morning David Hows the weather in Canada this morning?
coak: I can't remember that far back
Bruce: Morning, David, what is the weather like up there today?
TJ: What do you mean Murf about not much in my profile? Good morning everyone! I can't stay on the chat very long, my construction workers just showed up to pour my new sidewalks and ramp. I got my new powerchair this week, Yipee!
coak: Hi Craig. Do we know each other?
DavidJames: we have had a very mild winter. It is close to freezing.
craig_h: might not coak, I've ust come into this chat the past few times
coak: I'm happy for you, TJ. You'll really appreciate it.
coak: Where are you in NJ?
Murf: David - I moved here 6 years ago - its 56 and going to 70 today, just so you know LOL
TJ: Yes and medicare paid for all of it!
craig_h: Murf is a weather bragger, lol
TJ: Now I have a new scooter and powerchair!
DavidJames: Where are you Murf?
Murf: Houston TX
DavidJames: I am in OTTAWA..
TJ: I'm ready for another hoedown! Up north, how about you Murf!
TJ: How's the Coakley Cane going, John?
Murf: TJ - the My Profile tab above. I think it only works if someone else is online with you. I tried twice loging on alone unsuccessfully.
coak: Hoedown on the Sat after Labor Day (every year) -- everyone invited!
TJ: Got to go, it was fantastic last year!
coak: Coakley cane has been re-named to the LIBERTY CANE
Murf: We'll have to plan the trial around that day
craig_h: at the hoedown, will you be serving Dutesteride smoothies? lol
TJ: A proper name for it.
TJ: I never did receive an e - mail about the test
coak: With the 444 +/- here, I don't know what we serve.
Murf: right click to someone's name to the right and you can see their profile
Murf: I sent you one and so did John
coak has left the room.
TJ: Hey Murf it worked
TJ: I did not get either one, sorry!
DavidJames: I sent in a response to the drug trial but i have not got a response yet.
coak entered the room.
coak: Blown off -- back again
TJ: I don't know if anyone has poured concrete lately, but it's expensive, $75.00 a yard
DavidJames: Which drug are they going to test?
Murf: David - you won't
Murf: not yet anyway
craig_h: what is the liberty cane?
TJ: How are you Bruce and John both?
coak: Dutasteride (check spelling)
Murf: better than gravel though right TJ?
coak: This shouldn't be considered a commercial, only a reply..... Look at www.libertycane.com
TJ: Yes, absolutely Murf!
Murf: Can you spin your tires on the concrete?
craig_h: thanks, I'll check it out later
TJ: I heard a rumor that all KD people get one free, is that right John, LOL!
Murf: Very good cane I love mine!!!
coak: If concrete was being poured here, I'd probably fall and leave my as- print in it.
Murf: and well worth the money!
craig_h: so far luckily I haven't needed a cane much
Murf: You will - sorry
TJ: John, you have a beautiful place, no concrete neede there!
craig_h: I know
craig_h: I can still get through Walmart as long as I hang onto a buggy, and go first thing in the morning
coak: Today's topic is what? Mobility?
Murf: Johns cane is the best nost functional cane i have used
Murf: yes and this falls (LOL) in line with that
Murf: so does TJs concrete
coak: I had to get a power chair about 2 months ago & got a used Chrys AWD van to haul it in.
TJ: Well, I'll tell you all, 2 years ago I didn't need anything, now today I'm tickled to death to have my scooter and powerchair, what leg savers! My wife's Uncle died Thursday of ALS, we have to go to the funeral today.
DavidJames: I get around pretty well on my own so far.
TerryW entered the room.
coak: Hi Terry
Murf: Morning Terry
TerryW: Just woke up
DavidJames: helllo terry
craig_h: morning Terry
TJ: Hi, Terry
Murf: sorry TJ
TerryW: Did anyone see ER this week on TV?
TerryW: very good episode
DavidJames: I missed it.
TJ: Yeah, he 's a great guy!
TerryW: on a man with ALS"
coak: I put a lift in the back of the van and also put an inverter in it to keep it charged up while driving from here to there.
TJ: No was it interesting!
TerryW: Yes very good.
TJ: Hey good idea John
coak: Great show this week
Murf: John can you send me info on the inverter?
TerryW: Today is Bruces BDay
coak: I wish I could type as fast as he was able to communicate -- what a neat technology!
DavidJames: happy bday bruce
TerryW: Happy Birthday Bruce when you read this transcript
TJ: Happy B-Day, Bruce, I'll bet your 30! LOL
Bruce: Well, actually, it is Tuesday. But we are celebrating it today because it is a weekend and everyone can come.
TerryW: LOL I just noticed he was herre, I am still 1/2 asleeep
coak: Happy B'Day, Bruce & Murray
Bruce: Thanks, all ... I don't feel a day over 70
Murf: John you and me are mr gadgets
TerryW: I thought you were not gonna make it Bruce?
Bruce: I am only here for a little while awaiting everyone's arrival.
TJ: You know talking about mobility, I wish I had gotten my scooter and chair earlier just because it saves the strength in my legs
Murf: me either Bruce I feel 90
TerryW: Murray is it yourBDay also
TerryW: If so Happy BDay to you
Bruce: Speaking of canes, John's cane is very sturdy and comfortable.
Murf: 50 Terry
Murf: TJ - I'm glade
Bruce: TJ, how do you haul the wheelchair around?
coak: Murf -- $50.00 at Radio Shack. Plug it into an outlet that is alive when Ignition is on and you have to push the ON button on before you leave on a trip. It will chg until Ign is off.
DavidJames: I will turn 50 in may.
TerryW: I just read my e-mail it looks like FLDON can't get logged in? I bet its that security setting. I will have to fix it with him this week
TJ: Guy's I have to go, the construction workers pouring my new sidewalks need me outside, Murf update me later, please. Bruce I bought an SUV and put a lift on it
coak: He needs to re-register
Murf: I use mine every day and have for the last 3 years at work. Otherwise I would not be able to go to work.
Bruce: I wonder if that is why our turnout is a little low today...
TerryW: he did earlier this week, but I am not sure that he tested it
Murf: Thanks John
craig_h: terry, I couldn't get logged after re-registering ..... I had to go to "history" and find http://www.bummerchat.com/premier30/kennedy/chat/ to get in
TerryW: 40 people reregistered
Murf: Have fun TJ
TJ: Hey I liked the message I saw about the chat being the 1st and 3rd saturdays, good info Terry!
Bruce: Out of how many before Terry?
TerryW: maybe more but i did not check this morning
TJ has left the room.
TerryW: we had about 150 before
Bruce: We might need to send out another reminder next week when we notify everyone of Paul Taylor's attendance as our guest.
coak: Terry, Can you send that link to Don? I just asked him to re-reg again.
Murf: Some will not test the system before hand so it may take a week or so to get back there. (to 150)
TerryW: I put a new post in the KDA forums about swallowing exercises I saw on the news this week. to help with swallowing food
coak: OK Men -- Who is saving this chat today?
Bruce: The forum has almost died again.
Murf: I just ordered a DVD on Qigong exercises
DavidJames: I got some swallowing exercises from my doctor,
TerryW: I noticed bruce
coak: Bruce, I can not remember to look at that -- too much on the plate.
Murf: I am going to save the chat every time I'm loged on .... Just in case
Bruce: Murray, I still practice every day even though most of my exercises are now done sitting down.
coak: I practice with Guinness! Smooth and no large parts to get stuck.
Murf: I ordered the wheelchair tape # 001 so I'll be doing it sitting down too.
Bruce: Even if we would post items that work for us, for example the Joey, it would be a good resource.
Murf: LOL John you lush
coak: Craig, Can you briefly describe here --= or send me email
craig_h: coak, about?
coak: Murf, we need to stay in practice before we all go out in Atlanta
coak: Craig - swallowing
Murf: Oh .... I forgot
craig_h: sorry coak, that wasn't me
Murf: Guinness makes my legs go funny
Bruce: I have to go. People are starting to arrive. Have a great day and stay safe, healthy and upright (unless sleeping).
coak: Info on JOEY lift ... Check it out . It's from Bruno and I'm really pleased with it.
Bruce has left the room.
TerryW1202 entered the room.
TerryW has left the room.
Murf: You cloned youself.....
Murf: Take care Bruce
coak: Craig -- sorry. The screen moved faster than my eyes. OK whoever has swallowing, pls advise.
TerryW1202: I sent don the link and then I tested it and it logged me in twice
TerryW1202: I missed that text coakwhen I got kicked out
TerryW1202: what did you ask
coak: I just scrolled back up & found what I wanted -- thanks
Murf: John - I also have a Bruno lift but a curbsider
coak: Terry -- swallowing
TerryW1202: My name appears wierd, I will be right back
TerryW1202 has left the room.
Murf: Will I catch what you have as I get older John?
craig_h: I keep opening email hoping to see "The NIH would like to invite you to Bethesda" ............ lol
Murf: LOL LOL LOL
TerryW entered the room.
Murf: Good Morning Terry LOL
TerryW: Thats Better
Murf: Craig - Cotach John for this
craig_h: heck, if I got that email, I'd buy Murph a case Guiness
craig_h: oh, I got the volunteer email, I sent that back immediately
Murf: the case is for John
coak: The Joey is really user friendly. Chair sits on platform that goes up & in the back of the van. I sprung for retractable hold down straps (worth a million)
craig_h: or forwarded it
coak: I'm the fully mobile crippled guy now.
Murf: Craig - we have to find 50-60 people for the NIH. They can't go looking for themselves. John Coakley is leading this effort.
TerryW: We need to think of a way to get people more involved in using the forums
craig_h: thanks Murf. I understand.
Murf: Me too John and my boss wants a speed limit in the office now!
TerryW: NOTE: to anyone reading this transcript - If you have a topic or category that you think would be good to put in the KDA forums please e-nail the KDA with your ideas.
TerryW: where did bruce go?
Murf: I agree Terry
Murf: He had people coming over for his Bday
TerryW: In 2 weeks I go to speak at a hopital on KD
TerryW: in from of students
Murf: Cool ...to doctors?
TerryW: spelling is bad this moring finger are cold
TerryW: some may be there. I am still getting details.
Murf: good luck!!
craig_h: hope that goes well Terry
TerryW: Today the auction ends on the items the KDA put up on Ebay
coak: I've done that 5 times now, Terry. It's a good thing. Last time was at NIH w/Dr. Chen
Murf: Would it be worth reminding the membership on that Terry?
coak: I'll get back with you later this weekend.
Murf: Dr. Paul Taylor will be here to chat on the 18th of Feb
craig_h: ok coak
coak: Got to go -- Family matters. Talk with you all again soon
TerryW: we may just do that Murf
coak has left the room.
craig_h: Looking forward to seeing Dr. Taylor. He was very friendly and informative when I saw him in August
Murf: We need to get the word out so no one has problems loging on
Murf: Take care John (always a dollar short and a day late)
TerryW: one other problem that people may have had is that the KDA server was relocated and some people trying to get into chat may have been routed to the old server
DavidJames: I must be going now
DavidJames has left the room.
Murf: Bye David
TerryW: I think I am gonna go take my shownow myself, Hot water always feels good and gets me moving better
craig_h: ok, y'all have a good one. See ya on the 18th
craig_h: Hot water helps me too
TerryW: see ya
TerryW has left the room.
craig_h: see ya Murf .......
Murf: This is the important computer anyway so if I can't log on at work its no big deal
Murf: see ya
craig_h has left the room.