| Kennedy's Disease Chat Transcript 6-17-2006 Topics: Topic: Open Forum Host: Murray Williams | ||||
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Chat Participants: Dart!TerryW craig_h murf Gary_KS MikeG doughboy fl-don emeyerth Gary_KS BEGIN CHAT
craig_h entered the room. Dart! entered the room. TerryW: did you all get knocked out Murf: OK thats twice that happened craig_h: yup 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 TerryW: yes MikeG: bummer! Murf: Yes ... all gone MikeG: maybe that's why it's called what it is... Murf: LOL 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 MikeG: //0 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: thanks doughboy: Hey Murf aren't you heading off on the plane soon? Murf: We need to go for lunch next Friday Murf: Monday 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! TerryW: note doughboy: what news good? Murf: Don - tell us MikeG: sorry to hear that Terry. lad you're better now. Dart!: What a 'bummer', Terry!! MikeG: glad 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 Murf: Great 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 TerryW: different 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 TerryW: pins Murf: I enjoyed my spinal tap more!! TerryW: All external connections craig_h: they had to tape my thunb, it jumped to much craig_h: thumb 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 Murf: LOL 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 fl-don: in TerryW: I will not be making it this year Murf: me three doughboy: So I will meet you then Don TerryW: sorry :( fl-don: yeppers 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 TerryW: going 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. emeyerth: yes 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 TerryW: :( 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: bye fl-don has left the room. TerryW: bye 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. doughboy: Bye Murf: good 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!!! TerryW: yes 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 wish
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