Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  11-1-2008

Topic:  Open Forum

Host: Murray Williams


BEGIN CHAT

murf: morning
joshpat: hi¡
joshpat: how are u
murf: Great and you?
murf: Houston 66
joshpat: just waking up
murf: I'm on my 2nd cup of java
joshpat: i'm mexican 36 female
murf: carrier?
joshpat: english teacher
murf: Are you a carriere of KD?
murf: carrier
joshpat: but i don't have experience in it.... i mean talking
joshpat: sorry 8)
murf: this is a chat for people affected by Kennedy's disease
joshpat: no i'm not.. but my husband is
murf: ook you are more than welcome
joshpat: thanks...
joshpat: so are u married
murf: morning Joe & TJ
trailblazer: Morning to all
joshpat: hello everyone
murf: joshpat not any more
joshpat: may i ask u why?
trailblazer: Hello Joshpat
murf: she was killing me
joshpat: hi trail
joeK: Hi from NC
joshpat: how is that?¡
trailblazer: Howdy Joe
murf: joeK hows your weather?
joeK: Is this char for others?
murf: anyone with an interest in KD is welcome
joshpat: if you wish i'll go out...
joeK: Weather about 50 deg at 10:30 am
murf: there is a womans carriers others chat once a month as well
joshpat: i know this chat is for family the 2nd saturday of the month isn't it?
murf: something like that ...its on the website
joshpat: :) ok guys... may be other time.... have a nice day and God bless u..... BYE
murf: Nov 8th is the next womans chaqt
trailblazer: I will be right back time for a smoke break
murf: CYA
joshpat: THANKS
murf: Joe you don't smoke do you?
joeK: NO
murf: Me either - I can't get TJ to quit
joeK: Well you have to die fo something
murf: yup
murf: did you have lots of goblins last night?
murf: Morning CER
joeK: Murf where are you in the world?
murf: Houston TX
joeK: No youn folk in my neighborhod
murf: I didn't get any political figures at all last night
murf: Morning carofer
carofer: hi folkks
murf: Lots of candy left over
trailblazer: I had 4 trick or treaters last night
murf: Billy's kids?
joeK: How do you keep from watching the lies on TV
MikeG: hi guys
murf: an isn't it getting rediculous
carofer: i have had one t-n-t'er in 18 years here
murf: hey Mike
MikeG: hey Murf
loshimo11: Good Morning Everyone. This is Luis Shimomura joining in from a rainy San Francisco.
trailblazer: I watched the PBR rodeo finials last night from Las Vegas
MikeG: how cold is it in SF today?
murf: Welccome its sunny here in Houston and going to 88
MikeG: warmer than here,Murf
MikeG: may get to 84
loshimo11: Unusually warm. It's 67 inside the house without the heater on. It must be the overcast keeping things nice.
carofer: it's about 45 degrees hear near santa cruz ca
murf: I had a mechanical Jason & Pirate at the front door that scared a few little ones
MikeG: that's good - I don't like cold... and my hands don't like it even more!
MikeG: morning Ron
loshimo11: Just saw the weather forecast... It's 61 outside and expected to rain the whole weekend.
MikeG: :(
trailblazer: We could use some rain
murf: I also had the family of the little one come over with a camera to get pictures of the kids on my bench
carofer: good for the snow pack, anyway
murf: Warm & sunny all weekend
loshimo11: We need the rain here in California.
MikeG: us too
Gary_KC: Good morning. This is Gary Uchiyama joined from KC. It is fogy this morning.
MikeG: morning Gary
murf: Morning Gary
loshimo11: Good morning Gary_KC.
trailblazer: Hi to all
Ron: Good morning guys. Hope everyone is doing fine.
murf: Morning Ron is that you?
joeK: fall leaves lookin great here in Greensboro,NV
carofer: which kc, gary?
murf: I bet
trailblazer: Sleepless is all
joeK: corection greensboro,nc
MikeG: I've got some pretty bad low back pain today - didn't do my exercises... :(
murf: how long are you going to be awake?
Ron: Yep--its is I.
trailblazer: Take some Morphine
murf: Stretch first Mike
trailblazer: I'm struggling now Murf
Ron: What is bothering you TJ?
murf: trailblazer call me later and I'll come out
murf: He sleeps all afternoon and then can't sleep at nioght
trailblazer: Deer season started here in Texas today! Wish I could go!
trailblazer: Ron I can't sllep I don't know why
murf: go where?
trailblazer: You know I'm on Morphine now maybe thats causing it
MikeG: I couldn't even hold my 308 up if I wanted to - let alone pull the trigger...
trailblazer: Go hunting
murf: he's also trying to sell a few tickets for me :p
MikeG: or go walking in the woods!
trailblazer: No walking
trailblazer: Well are all of you getting excited about the conference?
murf: There is a lot I can't do any more ... but I don't worry about it cause there is a lot I can still do
MikeG: sure!
trailblazer: I know I am!
murf: I just had a poster 2' x 10' made
carofer: right, murf
MikeG: are you going TJ?
murf: carofer ;)
trailblazer: No but I'm excited just to see an other one come around!
MikeG: yep - you should try to go.
carofer: sounds like fun -- my first one
trailblazer: I'd like too but the energy is not ther
murf: we'll hear from a lot of the researchers at NIH on the trial this conference
MikeG: try not... do must!
murf: carofer you'll have a great time

MikeG: well, we're going to have lots of great news from this one - I'm sure!
trailblazer: I'd use the smiley faces but I don't know how!
carofer: i was unconvinced until every one of my friends, family, and life coach convinced me to attend

trailblazer: carofer where are you from?
murf: trailblazer its the smilly face just under the text here
carofer: santa cruz mountains, ca
carofer: town called felton
MikeG: Ron, you having problems this morning?
trailblazer: Yeah I see it but when I click on 1 I get numbers and other objects
terryW: Hello
murf: then just hit send ... dummy
MikeG: hey Terry
murf: Hey Terry
trailblazer: I'm sorry I just dumb I guess
CER: Mike are you the gent that talks with a young lady living in NC or maybe you e-mail????
murf: it looks like that until it goes into text
trailblazer: trying :p
murf: are you going to be up this afternoon?
MikeG: yes
terryW: I just woke up, I hate it when it stays dark
trailblazer: it works
murf: there you go
CER: Mike, we are her grandparents.....Be good to her - we love her dearly.
trailblazer: Yeah we set our clocks back one hour to night going to get dark early
Ron: Yes Mike--I was having trouble with the right side of the page--the list of people on the chat.
murf: ask ... don't try to figure out by yourself
carofer: tomorro it will be lighter at this time
MikeG: kool! She's been a great help to us.
terryW: thats good
MikeG: I head up the volunteer program for the KDA
trailblazer: Cer where are you from
CER: She dearly loves that work, however, is a bit busy with that 9 mo. old baby and working also.
MikeG: I used to work in Wilmington - actually Reigelwood.
MikeG: I bet!
CER: I say we because CER doesn't type. We are from WV. Haven't been in here for months and just took the time to get in this AM.
MikeG: we used to go to Wrightsville Beach when I had to go work during the summer. VERY NICE AREA!
MikeG: I'm very happy you did.
MikeG: I wish you could make it to the conference but I totally understand.
joeK: terry with this new page can you put some personal information about yourself?
MikeG: joeK - that's the thing we miss the most!
terryW: I don't think you can put very much info
terryW: at all
trailblazer: I'll be glad that the elections will be done next week, I'm tired of all the BS! lol
terryW: I just checked and it does not look like it has any profile info
MikeG: me2 TJ!!!
Ron: Terry--I would like to see the list of chatters and the state where they are from. Most we know but some we don't see.
trailblazer: When is the conference?
MikeG: whoever does get elected will have his plate full for 4 yrs!
murf: Ron I miss that to
murf: trailblazer Nov 19-21
trailblazer: Sure will Mike
terryW: Ron I don't think that is possible unless they put the state info in their ID
CER: Mike, she speaks highly of you. She just asked me if I knew you this past week. We have progressed to the point we don't travel anymore. A feeding tube can be inconvenient at times and eating and social life is a most enjoyable time at the conference.
Ron: We should ask them to do that.
murf: MikeG only one of them has a plate
MikeG: :)
Ron: Murf--are you doing OK?
murf: and thats all I'm going to say on that
trailblazer: I can't see how the justify spending so much money for a $400,000.00 a year job
murf: better that the last chat
CER: Wouldn't it be nice if EVERYONE could work together on the world situation and crises????????
trailblazer: Yes it would
MikeG: sure would!
murf: trailblazer its your money their spending
joeK: Maybe i'll reregister as Joe_Kerley_78+_Greensboro_NC
trailblazer: Well then they should use some to get rid of that nut Pelosi - no offense anyone
murf: joeK we used to be able to right click the names and get where they are from ... can't do that with this chat
MikeG: be careful about putting your last name in it though... web crawlers are everywhere......
carofer: pelosi, the theologian?
trailblazer: It's a beautiful day my dad is 82 today, my daughter's 6th anniversary is tomorrow and charleys 59th b-day is Monday
MikeG: the geologist
murf: joeK and that was only if the person entered the info
terryW: Hi Stan
murf: Hey Stan
Stan: Hi
joeK: sorry but Pelosi s not on my
trailblazer: Howdy Stan from Texas
terryW: I need to go, not feeling to well, updset stomach, Bye all
MikeG: take care Terry
murf: trailblazer I got charlie pegged on Facebook
trailblazer: Bye Terry
murf: C YA Terry
FL-DON: hi all
MikeG: hi Don
trailblazer: Yeah I saw it
Ron: So long Terry. Hope you feel better.
murf: Hey Don
trailblazer: Hello Mr. Don
FL-DON: conference in 3 weeks. chill the beer!!!!!!!!!!!
FL-DON: 2 weeks that is
trailblazer: Yeah I'd fly there but I'm not a bird! :}
FL-DON: amtrak
Ron: Yes you are a BIRD TJ.
trailblazer: Does that run from here
carofer: i have a few days before the conference and i could get a car and give someone a ride there if needed (i will be in md)
FL-DON: here???
murf: He could have driven with me
trailblazer: Texas - Murf I'm not sure we can ride that far
MikeG: right - after the Vegas trip... :)
murf: we did once before
trailblazer: That would be a hard trip I believe
murf: it would have been fun
murf: think +
murf: not -
carofer: i could maybe do fla but not tx
trailblazer: Yeah your right but I'm skepticial
murf: no comment
Ron: Come on TJ. It will be boring without your wit at the conference.
murf: :?
MikeG: that's right!
trailblazer: Charley was hoping we would he wanted me to follow you back in his car so he could have it back home
trailblazer: Thank's guys I love ya'll too!
murf: so your pride messed up a lot of people .... i see
trailblazer: Ya'll need to work on Billy
trailblazer: Guilt tripper
carofer: i am at NIH the week before the conf and i am just staying over to go to the conf
murf: Oh do you feel guilty?
trailblazer: that's perfect for you carofer
murf: carofer good news .... you must be the last on
trailblazer: who me feel guilty, please I'm a mountain man! :}
murf: trailblazer you have a private message to answer
trailblazer: how do you do that?
murf: valley wossy
murf: lol
loshimo11: Does anyone know what to expect to hear from Dr. Chawnshang Chang in regards his research?
carofer: i found a less excpensive hotel nearby that has kitchen
murf: same as the last one
murf: click my name (right) and message at the top
CT_Jameson: Hi all, sorry i'm late
murf: loshimo11 he will be attending
MikeG: loshimo11 - yes he will be at the conference
murf: carofer everyone that trys that regrets it later
MikeG: his J9 is our next big hope!
murf: MikeG is very exceting
Gary_KC: J9, is it ASC-J9 or others?
CT_Jameson: Is it too late to get the early bird special of $200 for the conference? The deadline was moved to Nov 1st...
MikeG: he is in Japan & China now and will bring back more news from that front for the conference.
murf: CT_Jameson we extnded it
murf: $200 at the door to
MikeG: ASC is AndroScience
loshimo11: It'll be interesting to hear what his next steps will be with the ASC-J9(?) compound.
CT_Jameson: cool...
murf: Its our economic plan
trailblazer: Guys please have a wonderful and safe day, week and all I'm got to go but your all great! Bye who knows maybe I;ll magically appear at the conference
murf: call me C YA
Ron: Hope so TJ.
trailblazer: I will Murf
Gary_KC: I found ASC-J9 was used for hair restoration.
murf: Gary_KC must affect DHT then
MikeG: yes - and cancer treatment
Ron: It would be nice for Murf if you ride wwith him to the conference.
loshimo11: I also heard that it was used for acne.
murf: Ron I'm flying now
Ron: OOPS
murf: Long way to go alone
Ron: That is good for you Murf.
CT_Jameson: I'm gonna take the train
murf: CT_Jameson May be I should try that once too .. could be a beautiful trip
CT_Jameson: It is a lot shorter for me
CT_Jameson: only a 4 1/2 hour train ride
MikeG: yes, lots of hope for J9... read https://www.urmc.rochester.edu/ChangARLab/ChangPapers/CV262.pdf if you haven't already.
loshimo11: Imagine... If this ASC-J9 compound works, we'll all have a nice thick head of hair, with a clear complexion along with healthy muscles!!!
Gary_KC: MikeG, thanks for the info.
MikeG: we already have hair
murf: 3 hr by Continental and I can take my chair top the door of the plain ... all for $218
MikeG: is anyone here balding?
MikeG: most KD'ers have a head FULL of hair!
murf: none cause of the DHT
murf: we all will have hair
carofer: hair gud muscles bad
murf: ED can explain but its the DHT and how our bodies handles it
CT_Jameson: I am 5-6 hrs drive from Baltimore, a plane ride would only save me ~40 minutes
murf: CT_Jameson I wanted to take a few weeks and visit some of the civil war battlefields
CT_Jameson: fun
murf: one day
CT_Jameson: Gettysburg is the best...
murf: and close too
MikeG: murf - you mean the War of Northern Agression, don't you?
murf: ha ha ... yup I do
murf: lol
MikeG: ok then
MikeG: :)
CT_Jameson: well we are big and bad to the bone :-)
murf: the south is alive and well
murf: but we won't go there
Ron: It is the only war that never ended.
murf: lol
FL-DON: gottya go. c u all @ conf!
CT_Jameson: the war on terror has a good chance of falling in that category
MikeG: ok, gents, it's been fun but I need to get started on some honey-do lists. Until next time - take care...
murf: take care Don CYA in two weeks
FL-DON: yup. bye
Ron: Stay healthy till next we chat.
murf: CT_Jameson but on that one we are united!
CT_Jameson: yes
CT_Jameson: true
CER: Enjoyed the chat very much also. Will try to make the next time.
murf: thats why we need to elect the old guy
loshimo11: Gots to go... Everyone... Please stay upbeat, healthy and vertical.
murf: take care every one
Ron: So long guys. Hope to see you all at the conference.
carofer: bye til conf
CT_Jameson: I think I'll be there
murf: I'm stickin around
CT_Jameson: with my wife
CT_Jameson: and bells on
murf: CT_Jameson your toes
CT_Jameson: of course
murf: :}
carofer: murf, why is it a mistake not to stay at the bwi marriott?
Gary_KC: I got go. Talk to yours the next time. Bye.
murf: Others (my brother included) went with a cheaper Hotel near by and ended up exhausted at the end of the conference due to all the extra travel
murf: I guess its a few extra buck and you have a great time not getting exhausted
carofer: how late do the people meet in the evening?
murf: we can always be found around the lobby or bar for private chats
CT_Jameson: see ya'll soon.
murf: people eat out so we are always comming & going too
CT_Jameson: I'm out
murf: CYA
murf: take care
Stan: Bye, take care
murf: cya stan
carofer: ok -- i think i will keep my kitchen room because i will be there for a week and i neeed to do some work while there, as well
murf: carofer no problem and good to have you coming. we'll be happy to finally meet you
carofer: thanks for a good chat
carofer: see you at md
carofer: bye
murf: take care and c ya in 2 weeks