Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  07-16-2005

Topic:  Open Forum

Host: Murray Williams

 

Chat Participants:

Terryw
murf
kelly
JoeK
duane
FL-DON
Gary_KS
denny3369

BEGIN CHAT

murf: Good morning Terry

Terryw: hi

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: WOW

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

FL-DON: GM

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: yes

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

Terryw: positional

FL-DON: since fall?

murf: Sorry about your mom Duane

Terryw: before

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

FL-DON: gotcha

murf: Ted Noack

FL-DON: k

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

denny: Hi.

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

Terryw: chat

kelly: ok thanks terry ill do that yup

FL-DON: murf, 3 docs lined up 4 what?

Terryw: Q&A

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

Terryw: yes

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

FL-DON: //0

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!

kelly: //0

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?

kelly: //23

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

JoeK: My

JoeK: MY

kelly: maybe way back in the medevil times lol

kelly: 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?

Gary_KS: Yes.

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?

denny3369: Bye

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

Gary_KS: Bye

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?

JoeK: yes

murf: I hope we can avoid Emile too

murf: OK well I have to save the chat

END CHAT