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Kennedy's Disease Chat Transcript 06-17-2006
Topic: Open Forum
Host: Murray Williams
craig_h entered the room.
Dart! entered the room.
TerryW: did you all get knocked out
Murf: OK thats twice that happened
Murf: Bummer crashed again
MikeG entered the room.
TerryW: I need to call tech support again. Last chat their server that they host us on rebooted and lost everybody
Gary_KS entered the room.
Dart!: What did I do wrong - was it something that I said? I didn't cuss!
MikeG: don't know what happened - just got kicked out of the chat...
Murf: Last time was about a minute after you checked last week
TerryW: I am going to complain
Gary_KS: Good morning all. It is a nice day in Kansas City.
Dart!: Back again, that is the main thing.
Murf: Bummer crashed people so no body did anything wrong
MikeG: maybe we're being monitored... //11
Murf: LOL that would be Terry & I //2
TerryW: I think their Server that the chat utility runs on is having problems
Murf: and they may not be aware of it yet
MikeG: Terry, do you lose the entire chat script when that happens?
Murf: We got everyone back in the last chat too
Murf: Yes ... all gone
MikeG: maybe that's why it's called what it is...
TerryW: I was lucky last chat with Dr Lieberman that Gary_KS and Murf had saved most of the chat
Dart!: Good application - 'bummer'!!
TerryW: I pieced the parts together and posted the transcript online
Murf: Gary got the most important part
Murf: I never think about saving til the end
MikeG: good job!
Murf: We need to thank Gary for pulling that one out of the fire
TerryW: Just got mikes joke Bummer LOL
Murf: It was a time joke LOL
Murf: with a delay fuse
Gary_KS: You are welcome. I just saved the log before the crash last time.
TerryW: I have been sick for the last 2 weeks and am now finally recovered
Murf: I go to NIH Monday
TerryW: I have never had anything like it
Murf: What was it
TerryW: I was thinking it was the Bird Flu
TerryW: and the government was not telling us it was here
MikeG: had a hard disk go out the other day - took all week to restore from backups! No fun!!!
TerryW: a cover up
craig_h: cool Murf, they are so friendly there
Dart!: Sorry to hear that you have been sick Terry - good that you are better now.
Murf: That would never happen
TerryW: Susanne has it now
MikeG: it's not a question of if...
TerryW: she's been home sick for 5 days
doughboy entered the room.
Murf: Been there once and met every one
TerryW: hi TJ
MikeG: what's she got, Terry?
Murf: Morning TJ
doughboy: better late than never. good morning
TerryW: same thing I got , some respiratory virus
doughboy: how is everyone?
Murf: We crashed once already so you haven't miss nothing
TerryW: they gave me Zethromax to get rid of it
doughboy: Hey I'm finding hard to breathe these last few days myself
MikeG: That's not good - hope you get over it soon!
doughboy: did you really murf?
doughboy: Hey Murf aren't you heading off on the plane soon?
Murf: We need to go for lunch next Friday
doughboy: okay your on!
doughboy: or monday you tell me
Murf: I fly Monday
fl-don entered the room.
Murf: Morning Don
doughboy: Okay that's what I thought, so how is everyone and whats being discussed today
fl-don: gm all
TerryW: and to make things worse while I was fighting the virus and already having breathing problems I had a allergic reaction (Anaphalactic shock) eposode from something I ate and my airway swelled up and face & body got a huge rash
MikeG: morning Don
fl-don: i got great news for sma here in tampa
Murf: Bummer chrashed again this morning so we're just getting back on track
TerryW: Susanne was out of town, I even went as far as writing a goodbye not and putting it on my dresser
fl-don: hi mike
doughboy: Boy Terry, sounds like you have really been through it these last few days!
doughboy: what news good?
Murf: Don - tell us
MikeG: sorry to hear that Terry. lad you're better now.
Dart!: What a 'bummer', Terry!!
TerryW: Luckily the Beadryl and Claratin rapid disolve tabs saved me and I did not have to use the epi-pen and inject myself
Murf: Dart - LOL
fl-don: university of south fl here in tampa is setting up a sma clinic for sma patients. the clinic will specialise in sam and provide a clinic for periodic visits.
doughboy: what is an epi - pen
TerryW: Does anyone else have food allergies
fl-don: it should be a one stop visit to see several docs without even having to move out of a room
TerryW: Epinephrin - Adrenalyn
MikeG: not me
doughboy: whats it do terry?
TerryW: I never did before i started showing symptoms of KD
doughboy: Great news for you Don!
TerryW: Hi Don
MikeG: what are you allergic to?
fl-don: maybe will encourage more cities/universities to duplicate
Murf: Don arre you booked for the trial?
fl-don: yup, go to bethesda in sept
TerryW: TJ, and epi-pen, not sure what it does
doughboy: My darn chest muscles have been killing me this week, the only relief I get is when I take 1200 mg of Nuerontin
TerryW: I just know they say use it and call 911
fl-don: i was part of the ohio state trial in the 90's
doughboy: Murf it's pouring down at my place what about yours?
fl-don: aol very slow this morning
TerryW: sorry to hear that TJ
craig_h: I felt awesome Wednesday, did way to much, could barely move last 2 days ....ugh
Murf: The only thing I'm not looking forward to is the EMG
MikeG: TJ, with 1200 mg I's sleep for 12 hours!
Murf: Not yet but 40% chance today
TerryW: Murf Ed says the EMG is a breeze
craig_h: oh the EMG is SO much fun !!!
doughboy: Yeah, what r we going to do, I'm sick of it, sometimes I don't care to be here
TerryW: no pins
Murf: I've had one and you can't fool me!!
doughboy: Yeah Mike, it makes me sleepy also but what else can I do!
craig_h: nope, no pins, just an electrode thing on the skin
MikeG: EMG with no pins???
fl-don: some emg's hurt, some don't, depends on the operator
TerryW: He just went to the NIH for his appt and they did not do the mins
Murf: I enjoyed my spinal tap more!!
TerryW: All external connections
craig_h: they had to tape my thunb, it jumped to much
Murf: I had both done in North Holland. Good thing the doctor could speak English
doughboy: Mike do you also take Nuerontin
MikeG: I just had one done in October and I sure had pins!!! No fun at all.
fl-don: mike takes Fosters Oil Cans
MikeG: yes, but only 600mg
Murf: It was the rod that scraped my bone that hurt the most
TerryW: rod? bone scaping?
doughboy: I think my lights are trying to go out, we are storming here, severe thunderstorms, if I leave it's because the electric goes out
Murf: I think it was 1/2 inch re-bar
MikeG: my neurologist wants me to take more but I'm working at Tropicana now and have to be able to stay awake for the 30 min drive!
TerryW: Murf who was your doctor? Dr House from TV LOL
TerryW: ok TJ
doughboy: How does the 600 mg do for you Mike because each of my pills are 600 mg and he told me 2 take 3 a day!
Murf: Was supposed to be the specialist
Murf: Killdare may be
fl-don: anybody know if they have all the kd'res for the study they need?
Murf: I think their still calling people
Murf: Do you have you're name in?
doughboy: I have talked to Kelly Campbell last week and he said he didn't get in, so I guess they did!
MikeG: all I can tell you TJ is that I don't have the dry drowning anymore. Other than that they just make me sleepy so I onlt take them at night. I take two 300s.
TerryW: I just saved chat just in case
craig_h: they told me they have a few on the waiting list
Murf: good I was just about to
Murf: May be they have all for now then
doughboy: Kelly really wanted to go!
TerryW: Hey Gary thanks for saving the day and the last transcript with Dr Lieberman
TerryW: you saved the day
Murf: Hopefully he still can
Gary_KS: Terry, I just saved the chat, too at half time.
Murf: Some one may cancell in the next 6 months
doughboy: I was thinking of dropping out to let Kelly go, he wanted to go so bad!
Murf: Don't you dare!!
doughboy: They all ready sent me my reservations however.
Murf: I'll hunt you down boy
TerryW: I did not sign up to allow others to go
fl-don: wuz hoping to meet some of you, but think they only take a few at a time
TerryW: 2 at a time
doughboy: Boy, you see a boy give him a thousand bucks
craig_h: I wasn't sure if there was another KD'er there when I was there
doughboy: Terry are you going 2 the conference or any of you others guys? I'd really love 2 meet you all!
fl-don: ill be ion atlanta
TerryW: I will not be making it this year
Murf: me three
doughboy: So I will meet you then Don
TerryW: sorry :(
doughboy: C'mon Terry! Change your mind buddy!
Murf: Why not Terry?
TerryW: Have other commitments here
TerryW: We have a lot foing on here during that time
doughboy: Well I'm going! It will be my first one. My brother Bill is coming also.
TerryW: You all will be fine without me
Murf: Not the point
doughboy: Not what I heard, I heard you were the life of the conference
emeyerth entered the room.
TerryW: that was Susanne
TerryW: hi Ed
Murf: Morning ED
emeyerth: good morning
doughboy: How about you Craig or you Mike?
doughboy: And Gary
fl-don: i have lots of problems flying and using the bathroom. so i use a texas cathater
TerryW: texas Catheter?
fl-don: do u use 1 terry?
MikeG: I'm going for SURE! Probably riding with Don.
doughboy: Heelo emeyerth, is your first name ED?
Gary_KS: Doughboy, I can't travel. So I won't be able to attend.
fl-don: do u use 1 terry?
craig_h: doubt if I go. middle of football season, I hope to get involved in that again this year
doughboy: Sorry to hear that Gary! LOL
TerryW: what is a Texas Catheter, I have heard of Catherters, is a texas on only bigger LOL?
doughboy: What do you do with football Craig?
Murf: Craig - they have TV's in Atlanta
craig_h: I've been the "stat" man for local high school since 1989
craig_h: last year I had to do stats from listening to radio, I hated that
fl-don: i take chair to plane door, they put me in a narrow w/c and wheel me 2 a seat, they lift me in the seat. then they pick me up from seat, wheel me 2 door, put me in my w/c
craig_h: I'm hoping to be at the games this year, if not, then a someone will have to take over for me
doughboy: Hey Mr. Ed, I tried to e-mail you the other day and my e-mail was returned and said your e-mail listed on the KD site was not good anymore! Is that right?
fl-don: never used other catheter so cant respond
doughboy: Wow! That's great Craig, good for you!
TerryW: i do not use one
fl-don: what games craig?
craig_h: high school football
emeyerth: I believe the email is correct
TerryW: I have to check Ed's email to make sure we have the correct one posted
fl-don: gotta go gang, lunch with wife & others. cya soon
fl-don has left the room.
Gary_KS: Don, could you stand up at the narrow w/c in airplane?
TerryW: 2 late
doughboy: Don't you have a personal story on the site?
Murf: Just saved
TerryW: me 2
emeyerth: My email has not changed in about 8 years - and last week I received an email from someone using the address from the kd site
doughboy: It really inspired me and that's why I was writing you, all of ya'll's personal stories inspire me!
Murf: TJ - put on your glasses LOL
emeyerth: Are you TJ?
doughboy: Yes I am
emeyerth: I got the email (and I replied)
emeyerth: did you get the reply?
doughboy: I didn't see a reply, I'm sorry!
emeyerth: I will resend
craig_h: well, y'all have a great weekend
TerryW: bye craig
Murf: See ya Craig Have a ggod one
doughboy: Thank you so much, I hoped it was okay to e-mail you
craig_h has left the room.
emeyerth: Of course, I love email - through email I can keep up on the price of viagra
doughboy: Hi Dart, may I ask where you are from
doughboy: Ha Ha! LOL
Murf: TJ - make sure your anti-virus or Junk mail settings are not set too high
Dart!: I am in British Columbia, right up against the Rockies.
doughboy: Ed are you going to the conference?
TerryW: Ed, same e-mail for 8 years must get tons of SPAM
doughboy: I bet it's beautiful there!
Murf: Dart are you in the trial?
emeyerth: Yes I am going (I think I am even speaking ;-)
doughboy: Thanks Murf
Murf: You are Ed. Thanks
doughboy: Good I look forward to meeting you!
Dart!: Yes, it IS beautiful. Our valley is about eight miles across, the Rockies to the east, Purcells to the west.
TerryW: Anyone heard from JohnC and how he is doing?
doughboy: Wow must really be an honor to be asked to speak there!
emeyerth: I am not sure that I would put it that way!
doughboy: Has he been ill, Terry?
Murf: Dart - you live in one of the most beautifull places on earth. and I've seen most of it
Dart!: I am not in the trial. I am still finding out what is wrong wioth me.
TerryW: no TJ, other family issues
doughboy: What have the Dr's told you Dart? If it's personal that's okay you don't have 2 say!
Murf: You have KD......LOL
Dart!: Ours is a very high tourist area, and a lot of people with money have travelled the world, and say that this is T
doughboy: I'm sorry, I hope it works out!
Dart!: THE place to be
Dart!: So they build their million $ cabins here.
doughboy: Yeah, it's another place I'm sure I'll never see!
TerryW: SAme here Dart
Murf: I used to keep my boat at Captains Village on the Shewswap
TerryW: Yosemite Natl Park, Bass lake
Dart!: The Drs have suggested that I have KD, but am currently going through more tests
doughboy: Yeah I heard Donald Trump going to build a Casino there Dart! LOL!
Murf: Dart you need to do a DNA test to confirm
TerryW: There is a casino 5 miles from my house
doughboy: What the Hell is a Shewswap!
Dart!: Whatever I have, they say that they can't help, and that is OK, I guess - the luck of the draw!
Murf: TJ - a reall big deep lake
doughboy: Sorry 2 hear that Dart, I'll include you in my prayers
MikeG: Dart!, you can get the genetic blood test and tell for sure if you have KD.
emeyerth: Dart - there is a DNA test for KD - one blood sample and they can tell for sure. It is the only reliable diagnostic method.
emeyerth: a bit slow ...
Dart!: That is hillarious - 'Shewswap'!!
doughboy: Who isn't Ed!
Murf: Spelling is wrong I know but I forgot
Dart!: Just two weeks ago O had the blood test, so will soon know, if they know.
doughboy: Okay Murf, I did not know
Dart!: And thanks for your concern - it does help to have back-up
doughboy: It helps me, Murf, Terry and all the rest have definitely been a comfort for me when I'm down, praise the Lord for all of you!!!
Murf: You too big guy
Dart!: That is fine, Murf, - it just struck me funny!
Murf: Great place I miss it
doughboy: Murf are you saying I'm big, geez I only weigh 235! LOL!
TerryW: I weigh 162
Murf: Hey - I lost 7 lbs in the last Month....//6
doughboy: Wish I did
Dart!: So you must have been close to Salmon Arm, Murf. That IS a really big lake, and in pretty country.
Murf: Thanks Terry//10
Gary_KS: I am doing diet now.
doughboy: Me too!
doughboy: See food!
Murf: Further west ...
TerryW: I have always been skinny
Murf: Names on the tip of my tongue
doughboy: So Murf are we doing Lunch Friday?
Murf: If I can walk
TerryW: OK Folks we are near the end of chat logging, continue to chat if you wishEND CHAT