Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  10-04-2008

Topic:  Open Forum

Host: Paul Deschamp


BEGIN CHAT


fl-don: morning
murf: Morning Don
fl-don: conference soon
murf: Talking to Mike
fl-don: k
fl-don: having lunch with mike this afternoon
murf: That's what he says
Gary_KC: Good morning. This is Gary Uchiyama joining from Kansas City. It is a nice sunny day this morning.
murf: Morning guys
fl-don: morning all from sunny fl
Ron: Good morning guys. How is everyone doing today?
Stan: Morning from Michigan, 35 degrees
murf: This is an open chat so if any one wants to talk about anything specific ... speak up :-)
fl-don: where in mi stan, wuz from sterling hts
murf: 75 in Houston and sunny
fl-don: 35 in mi is why i moved to 85 in fl
Stan: Albion. Formerly ftrom Redford
fl-don: know them well
Ron: Looks like we are going to have a good conference. At least 28 signed up so far. Great!
fl-don: looking 4ward to conference
fl-don: amtrak tampa to wash d c, light rail to bwi, hichhike to mariott
murf: me three ... off for coffeeeee.....
Ron: Murf--how is TJ doing He seems to be having a rough time right now.
murf: Ron I just talked to him and he said he didn't know about the chat
Ron: Glad to hear he is OK.
MikeG: Murf, are you finished with the trial yet?
murf: Yes last visit was June
MikeG: feel any different now?
murf: I'm going to ask to go on Avadart because I have not than doubled my pain medication
murf: Weaker too
MikeG: wow
Ron: Mike--I finished the trial 3 June--been feeling alot weaker since no longer taking the trial drug.
murf: Thats just me
murf: It all could be phycological
murf: I am a phyco
MikeG: it will be interesting to find out if you guys were actually on the eal thing...
Ron: I don't think so Murf.
murf: and I was on sugar I think
MikeG: real
murf: Don't know and we will not find out until the trial is over
murf: I don't think they will be able to tell us at the conference either
murf: They doo have other good news to tell us
Ron: I talked with Chas Rennels. He is still having trouble swallowing. He is on a liquid feeding tube. Don't think he will make the conference.
Gary_KC: Ron, that is interesting. You feel weaker now. Could you please tell us a little more detail? Tx.
murf: and lots of the dr.s & Angela in the trial will be giving a presentation
murf: Ron was he at the last one?
murf: Also be a dr. for pain management from NIH
Ron: All I know is that when I stopped taking the trial drug, I got ALOT weaker. Wasn't able to do some of the things I could do while on the drug. Placebo or the real deal. I am not sure.
murf: I also in June got up one step in the gym ... I could never do that before
murf: It really could mean nothing but I like to think not
Ron: No murf, but he lives relatively close to Baltimore. H was at the 1st one at Baltimore. He talked about the throat stretching procedure that he had.
Gary_KC: Ron, thanks. I see you don't know ....
murf: I think I remember .... Whats my name & weres my lunch box?
Ron: Sorry Gary. I can't be sure.
Ron: So--Is anyone having trouble with everyday living? I know we all have our challenges.
MikeG: if anyone wants to go on Avodart you can - it's an FDA approved drug... just tell your Dr. that you want to take it. It's benign. Tell him that you get up to pee 5 times a night... :)
fl-don: only 5 times???
MikeG: just be advised that your breasts will swell up twice as much as they are now and 'any' sex drive that you have will fly out the window...
CT_Jameson: :-(
MikeG: best to wait until the trial is over and then decide
Stan: Don't need that. I'll deal with the swallowing and choking and...
MikeG: Murf, how's the cleanup going in Galveston?
fl-don: i recently gort a nasi-pot to fluch my nose and it seems to be helping with the choaking problems
MikeG: if it truely would help I'd be taking it now. Even with the side affects.
MikeG: Stan are you taking Neurontin or Gabapentin?
Stan: I'm not on anything except coffee and Pepsi
murf: MikeG one moment
Stan: Doctor's have not mentioned anything about any drugs.
Ron: Mike--I was taking neurontin for awhile. It didn't do too much for me. I then went on naproxin. Seemed to do better.
MikeG: It helped me with the dry drowning...
murf: MikeG Gabapetin like M&M's
MikeG: yep - no side affects except it helps me sleep... :)
MikeG: I take two 300mg at night.
murf: MikeG 2 in morning & 2 in the afternoon
MikeG: 300s?
murf: MikeG &2 @ night
murf: yup
MikeG: wow - how do you stay awake during the day?
MikeG: at 1200 a day I'd be a zombie...
MikeG: bet you sleep well...
MikeG: I'm going to try to get Chang for the next chat - hope he can make it and talk about his J9.
MikeG: that's what I believe is our next big hope.
murf: yup 1800/day + 2 x ultran er
MikeG: so you're taking 4 450s a day???
Ron: Well gentleman--I must go for now. Stay healthy till next we chat. Bye..
MikeG: cya Ron
fl-don: bye ron
MikeG: oh, you're taking 6 300s... nm
MikeG: no - way I could do that.
MikeG: Do you ever have a dry drowning episode anymore?
murf: Ron cya Ron take carre
murf: I was on the phone with Weaser
MikeG: how 'bout them RAYS!!!
murf: MikeG and two ultrams and still in pain
MikeG: :(
MikeG: can't wait till they play the Phillies! :)
murf: Gaveston is rebuilding and I think the Island is open but for residents only
murf: still no sea wall (gone)
MikeG: looks pretty bad!
MikeG: I know - that's really hard to believe!!!
MikeG: that thing was huge!
murf: Not as bad as 1900 but close (low death toll this time)
MikeG: people had warnings
MikeG: and took action
MikeG: remember Carla in 61 or 62?
murf: to think I was just to the wast (clean side) and got away without losing a shingle
MikeG: yep - you're lucky
murf: Not that old yet Mike
MikeG: :)
murf: I was 5 in 61
MikeG: were you in Houston then?
murf: MikeG :-) Dad was at a radar instellation in the North :-) I heard the whole story last yr
murf: We went from there to Germany in 63
MikeG: I remember Dan Rather was the first news person (idiot) to be in the middle of a hurricane when it hit. Since then the disease has spread... :)
fl-don: i go work 2 do, see ya all later, bye
MikeG: cya in a few Don
fl-don: later mike
murf: No kidding, I'm rooting for geroldo to be swepped out to sea!!!!
MikeG: :)
murf: CYA don
murf: that guy is criminal
MikeG: I gotta go too - yall take care. cya later.
murf: When he broadcasted our position during Desert Strom I was hopping he caught a bullet
murf: ok cya Mike
murf: wow slow day on the chat, you guys ok?
murf: guys?
Stan: Ok. just got a fresh cup of coffee. will have to go soon. grass to cut, flowers to cover
murf: I hire guys 4 25 $ 2 cut
murf: Water flowers myself
Stan: I have 11 acres. It is my exercise
murf: Stay up right and have a good weekend
murf: Stan aaaaahhhhhhh
murf: no way you walk that
Stan: Not cutting the grass, but I do take walks around it with the wife.
murf: I wish I could ... no wife do the walk I mean
Stan: Sorry. I am surprised I'm married still sometimes (33 years). I can be a real pain.
murf: Stan I congradulate you. not many men can say that and still want to walk the garden with their wife after 33. She loves you or she wouldn't have stuck around
Stan: Yes. I am very fortunate
murf: you are my friend
murf: Ulthough I do not miss my X
murf: Gary ... you ok?
murf: poke
murf: :-)
murf: must have gone for a coffee
murf: Stan you still there?
Stan: Yep
murf: anything you want to talk about?
Stan: Not really, unless you know a way I can get back the stregth I had five years ago. I'd settle for that
murf: lol If I could do that my friend we would have to close down this chat cause there would no longer be a KDA!!LOL
murf: I'd settle for the strength I had just last yr LOL
Stan: Yes I guess you're right. It is very frustrating for me. I used to be able to press 250 with my arms. Now I'm lucky if I can lift 30
murf: I used to work offshore in the North sea and was one of 20 world experts in my field. ... Now my boss down graded me to nothing more than a clerk
murf: clerk in a wheelchair
murf: but thats ok I have great friends
Stan: I took the buy-out from Ford in 2007. I'm retired now.
murf: lucky man there is not FORD any more. LOL Dam cause they made the best trucks
murf: I would take a buy out if it was offered
murf: otherwise I'm looking at long term disability next year
Stan: I wasn't going to, but when I ran the numbers, I couldn't pass it up.
murf: I don't think FORD offeres that anymore do they?
Stan: I applied for SSD and got it. So I'm ok with that and my pension.
Stan: No, Ford is not giving the packages that they did.
murf: Good for you. I ran numbers and will be ok for 5 yrs after that who knows
murf: I doubt I'll last that long
murf: being realistic
murf: and I'm ok with that too
Stan: With inflation, the crooks on wall street and in the govt, I don't think anyone's will last
murf: LOL no kidding!!!!!!!
murf: I didn't lose a lot in my personal portfolio but 401K lost a pile
murf: Cashed out 53% two weeks ago
murf: I'll let the rest ride
Stan: I've lost 10% in my 401 since this crap started. I have a lot in MMA. Murf, good chatting with you. I think I'll sign off and get some work done. The apples are coming in so I have to pick them.
murf: OK CYA and take care!
Stan: Bye

END CHAT