Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  06-17-2006

Topic: Open Forum

Host: Murray Williams


Chat Participants:




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