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Kennedy's Disease Chat Transcript 07-16-2005
Topic: Open Forum
Host: Murray Williams
murf: Good morning Terry
murf: Looks like it will be a busy day
Terryw: I may be in & out of chat so make sure that you save & send to me
murf: I always do
Terryw: I finally got someone to pull weeds this morning
Terryw: Have to monitor him
murf: My lawn care guy does that for me
Terryw: People up here are different
Terryw: they will pull plants
murf: He does a good enough job so I leave him alone
Terryw: break drip lines
murf: Thats not good
Terryw: this guy yesterday chopped thru my landscape lisght wire & broke a main sprinker line yesterday
murf: It's been raining here lots what the weather like in your area
Terryw: now i need to fix that
Terryw: Hot Here 105
murf: 82 here and it's going to rain in the next few minumtes
FL-DON entered the room.
Terryw: Did you like the way I changed up the chat reminder text
murf: Morning Don
Terryw: try to get more people interested
Terryw: Hi Don
murf: Ya That looks good Terry
Terryw: Talked with TJ on phone this week for an hr
FL-DON: hurricane season here in fl
murf: How did that go
Terryw: Nice guy
Terryw: Went good
murf: He is
murf: We're going to get it soon Don
duane entered the room.
murf: Morning Duane
kelly entered the room.
Terryw: I slipped & fell on the tile floor in the bathroom two days ago. landed flat on my back
duane: hello everyone
Terryw: then fell again yesterday
FL-DON: u in texas murf?
murf: You haven't been around for a while, how have you been?
kelly: hi all how;s everyone today?
Terryw: Hi duane
duane: Hi Terry
Terryw: hi Kelly
murf: We're chating
Terryw: I was gonna call Duane
kelly: hey terry, gots to be more careful hey?
FL-DON: we changed all our tile to non slip as i was falling every few months
FL-DON: toodamn dangerous
murf: Yes Don a few miles west of Houston
Terryw: we have non-slip supposedly but I still did
FL-DON: have not fallin once since change of tile
duane: busy year especially may and june. My mom was in and out of hospital. She passed away last month.
murf: We don't heal like we used to
Terryw: I have had Vertigo now for 3 weeks
FL-DON: since fall?
murf: Sorry about your mom Duane
duane: Thank you.
kelly: i had a few spells of vertigo? weid hey?... just lots of muscle spasms.
Terryw: Duane, I did not hear. Sorry
murf: Are you going to join us on the cruise?
murf: Cabins are still open
Terryw: Duane I lost my dad in April, I know what you are going through
duane: No , I'm finishing projects at work and plan to go on disability.
murf: TJ just went on long term
Terryw: Big decision but best in long run
duane: It's hard to change routine of calling or visiting
FL-DON: who is tj?
Terryw: tj is doughboy
murf: Ted Noack
duane: Very big decision. I've put it since last year
kelly: i have been on dissability now for 2 yrs and 6 months,
FL-DON: been on disability since 1997
JoeK entered the room.
kelly: i was severed june 14 from the company
Terryw: Hi Joe
Terryw: Duane main thing is to keep busy when you go on disability
murf: hows the weather up north Kelly?
JoeK: Goodmorning from NC
Terryw: with other little projects
kelly: yes duanne for sure! or otherwise depression will, creep up
duane: Dr is ready to sign off and write letter to either work 5 days from home or disability. Just haven't approached work with my decision.
Terryw: rest when you need it
Terryw: Yes Kelly
murf: Morning Joe
kelly: lots of cloudy periods otherwise hottt
Gary_KS entered the room.
Terryw: Hi GAry
Gary_KS: Good morning all. Hi Terry!
murf: Morning Gary
duane: I've heard that. Keep busy.
Gary_KS: Hi Murf!
denny entered the room.
FL-DON: we now plan lots of things in advance, but cancel when i am not up 2 par. everyone seems to understand
murf: Morning Denny
kelly: gosh sorry i missed the last chat? i read it i see that the chatroom had a docter? hey great stuff
murf: We have three more Doctors & researchers lined up
kelly: REALLY wow good stuff what kinds of gp's?
murf: We'll have the schedule published soon on the web site
kelly: good murf rite- on
murf: Dr. Fischbeck and Dr. Merry
Terryw: Kelly check the chat schedule page after the caht
kelly: ok thanks terry ill do that yup
FL-DON: murf, 3 docs lined up 4 what?
JoeK: Where is the research takeing place?
murf: Lenore K. Beitel from Canada will join us in November
FL-DON: oic lined up 4 futurew chats
murf: Research is going on all over (Canada and the east coast)
Gary_KS: Murf, I am sorry to late the chat. Could you please repeat information about the resarch?
denny has left the room.
Terryw: Just got a new e-mail a new member from China just signed up in the last 5 min
denny entered the room.
FL-DON: gary, yuou can read the old chat transcripts on the kda site
Terryw: Gary they are talking about the last chat transcriopt
murf: We have Dr.Fischbeck and Dr. Merry on chats lined up
denny3369 entered the room.
Gary_KS: Thanks, all.
JoeK: does any of the researcher need us KD people
murf: Gary you go all of it
kelly: YOU know what guys? i got a strange email the other day? they say there is alot of KD in the anishebe are of nw, ontario? whatever that means caused from mercury lead poisening?? i found that kinda weid?
kelly: in canada here?
denny has left the room.
murf: They will start a clinical trial in Bathesda in a few months
Terryw: do yo still have the e-mail. If so forward it to me
murf: pLEASE copy me
kelly: i deleted it terry ill see maybe i still have
murf: Once the notice of the trial is published they will need some of us to experiment with
murf: Its getting very dark here
murf: The rain will start any minute
kelly: be on the watch for tornado;s murf lol
murf: Always am. I have my kit in the guest bathroom. Thats about the center of the house
kelly: good stuff murf u can never be to carful esp...in texas hey/
murf: I just had to turn on the lights in my office
murf: All, we still have room on the cruise!!
murf: $409 for 5 nights
murf: How can you beat that?
kelly: Yeah,i spoke With a lawyer about my dissibility insurance, here in canada he told me that the insurance will cut - me off because iam to young ???iam 42 yrs old. they dont want to pay me big bucks for the next 25 yrs lol.... I:LL keep yoiu all posted on my diss etc...
murf: Can they do that?
kelly: thats what i hear??? the insurance laws are differant from you americans i guess???
kelly: or maybe offer me a lump sum????
murf: Take a big lump sum!
kelly: ill never take a lump sum ill fight tooth& nail forever lol
kelly: gots no more coverage, on meds or dental or anything i have to pay myself now.
murf: Become a pain in their side! They'll pay to get rid of you. LOL
Gary_KS: I am looking for handicap mini-van now. Does anyone know if it will increasethe car insurance?
kelly: yes murf i will gauranteed lol
murf: Mine did not. I just put my lift on which may have added a $ of 2
FL-DON: gary, i also added a harmar lift and did not increase cost
murf: I pay less for my van than I did for the Acura
Gary_KS: Murf and Fl-Don, thanks for the info.
murf: I've had no accidents for years....they don't count close calls!
murf: Emile is headed straight for a friend of mine in Playa del Carmon. Hope he's got his head down.
FL-DON: last week, hurricane dennis just missed us by 120 miles
FL-DON: 2 close 4 comfort
murf: Your lucky from what I hear Don
FL-DON: lucky 4 times last year
murf: We have been luck for years in Houston. I hope Emile stays away
murf: Don - do you buy loto tickets?
FL-DON: been buying lotto tickets for many years, still poor and lame
murf: Is there any topic someone would like to see on these chats?
FL-DON: going 2 las vegas on 7/31, then i will b rich
murf: Good luck Don!
kelly: yes murf, rate of progression? from differant age's level etc. and medications etc. ongoing muscle spasms. etc.
kelly: and diss issues etc that would be great! probably have more pple join us on the chats
murf: We could make a topic out of that
kelly: good idea murf!
murf: Medication is always a tricky one
kelly: why? is that?
murf: We're a talkative bunch this morning!
kelly: yeah i supose yup
murf: Everyone still alive?
murf: me too
FL-DON has left the room.
JoeK: What causes KD to start in a famliy line?
murf: Don - was it something I said?
kelly: genetic'e joe.
murf: WOW, Joe I don't think anyone thought of where KD started.
kelly: i think?
kelly: good question joe?
murf: That's right Kelly but where it started I don't think anyone knows
kelly: mmm??? ok
kelly: maybe way back in the medevil times lol
murf: Someone must have pee'd in our gene pool a long time ago.
kelly: lol yeah hey??? lol
JoeK: my mother and two of her sister have passed it on.
murf: I think every one fell asleep
kelly: me my granpa had it passed it on to his daughter's
murf: I got mine from mom and her father
murf: And thats how that works!//1
kelly: my granpa was from scotland
murf: Our family comes from somewhere over there too.
kelly: yup mine to on both sides of the family lol
duane: Gotta run, line out mypainter. Talk you all next month.
murf: There is one town in Japan with a very high population of KDers
Terryw: I have to go. See ya all later
murf: Take care Duane
kelly: yeah i heard that to?
murf: Talk to you soon Terry
duane has left the room.
Terryw has left the room.
kelly: bye terry take care
murf: Gary, Denny...still awake?
murf: Are we that boring?
murf: Listening is ok too
denny3369: I'm here, but I gotta go
murf: Anything you guys want to talk about ...we have a few minutes left?
murf: Denny - take care and we chat again soon.
denny3369 has left the room.
denny entered the room.
denny has left the room.
Gary_KS: Have a nice weekend, all!
murf: Take care Gary till next time
kelly: bye gary
Gary_KS has left the room.
murf: Joe hows the weather in NC
murf: Rain just quit for a few minutes here
murf: Kelly I hope you get those guys sorted out up there.
kelly: Well Murf iam starting to get muscle spasms in my neck i guess i should be going
kelly: whats that
kelly: u mean in ontario
murf: No the disability guys
murf: If you find the Ontario guys please let us know
JoeK: clear about 77 deg --- hi about 85 deg chance of rain here in Greensboro
kelly: yeah its so complicate my diss it says in my collective agrrement till 65??
kelly: yes i will murf
murf: Take care Kelly...till next time
kelly: well got to go see u next chat bye murf and joe
kelly has left the room.
murf: Joe - you missed the last stroms?
murf: I hope we can avoid Emile too
murf: OK well I have to save the chatEND CHAT