Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

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Kennedy's Disease Chat Transcript 03-05-2005

Topic:  Open Forum

Host: John Coakley


Chat Participants:

murf
LouLou
Coak
doughboy
denny
billeric
kelly
Bruce
FL-DON



BEGIN CHAT

murf entered the room.

murf: Good morning all

kelly: ok yeah i own a house in prince albert

Burce: Okay, you caught me Bill. I just live somewhere until they kick me out.

LouLou entered the room.

doughboy: Good morning Murf, your a little late, I guess you have been celebrating your new found freedom!!!

Burce: Morning Murf

billeric: doughboy, creatine is supposed to be a muscle builder. I'll try it for a while.

murf: That right

doughboy: Hey Murf did you call your tax office yesterday?

Burce: Morning Ron

LouLou: Good morniong all. Hope your day is going great.

murf: Where's John?

Burce: ???

LouLou: John said he will be here.

doughboy: Ok Bill, let us know how it works, I have been doing a lot of resting and I'll tell you it really helps my legs

Burce: We are going to the home and garden show in a little while, so I can't stay on too long.

Coak entered the room.

Burce: Morning John

murf: Morning John

Coak: Hi all

kelly: hi Coak

doughboy: good morning

murf: TJ - I'll call Monday

LouLou: Creatine---What does it do for the muscle? Hi John.

Coak: Kelly & Doughboy -- Do we know each other?

Burce: Kelly, do you know anyone that works at the Weyerhaeuser Papermill?

doughboy: Hey Murf if we want to go on the cruise, where do I send my deposit?

kelly: nope but my dad used to contract for sask pulp before weyerhauser took over

murf: Send it to Susanne

Coak: billeric - how are you?

billeric: LouLou, it's used by body builders and such to help with muscle growth.

doughboy: Mr. Coakley, my name is Ted Noack and I live in Houston by Murf, My brother bill also has KD and has attended the conference in New Orleans. My sister Louise transcribed the Dr. notes for the KD from that conference.

Coak: #$%^&*, it's John, NOT Mr C...

murf: We need to discuss the cruise today. Carnival will not donate to the KDA now.

LouLou: How many have indicated that they will be going on the cruise?

doughboy: I was diaganosed with KD 3 or 4 yrs. ago with 61 repeats.

doughboy: OK John

billeric: Coak, doing o.k. for now. Still enjoying about a fall every 2 weeks.

Coak: Hi Ted -- I know Bill well

Coak: OK let's start

doughboy: I feel sorry for you, LOL

Coak: start chat

murf: We have two cabins confirmed. 4 people

LouLou: Ted--hope you are not as crazy as Bill.

doughboy: ask Murf

Coak: OK Burce

Coak: BEGIN CHAT

Burce: John, I see that my instructions didn't go to waste.

Coak: The cruise, headed up by Murray, shiuld be discussed this AM

doughboy: Has anyone heard any more about the clinical trials they were doing in

murf: John - doughboy is TJ

Coak: 10-4

billeric has left the room.

kelly: here in saskatchewan,, since my diagnose.s all of the neurologist;s ever give, me for kenndys disease is anti convulsant meds?? why?? i dunno. its the same med they give to pple with apelictic seizures?

doughboy: Myself, My brother Bill, My sister and her husband are planning on going.

Coak: Clinical trials are srill in the formative stages

doughboy: So you don't believe they will start anytime soon?

billeric entered the room.

Burce: Ted, did you ever tell us what the medicine was that the doc gave you to clear up your congestion?

Coak: Kelly -- are you related to Gary?

kelly: nope who;s gary??

murf: OK is everyone aware that Carnival will not donate $50 per persson to the KDA?

billeric: Sorry guys, hit the wrong button!

doughboy: No, let me go get it so that I will be correct back in a minute

Coak: TJ - no, I'm not saying that. Only that they are still in the formative stage.

Coak: They could start later this year. I do not have anything definite there.

LouLou: TJ--They ssure changed what they had told Murf.

Coak: Gary is in Sask also

kelly: really,, what town do u know?? Coak

murf: So now we have to decide whether to charge an extra $50 for the KDA or drop the price $50 and just enjoy our selves.

kelly: meadow lake?

Burce: I think Gary was having difficulty finding a specialist that knew anything about KD.

kelly: mm ok

doughboy: Burce, the medicine is Mucinex and it worked the first day I took it. I was so thick with it in my troat and it cleared it right up!

Coak: Yes -- send me your email & I'll send Gary a note and have him contact you.

LouLou: Murf--are we still goping to increase the price of the cruise the $50.00 to get monies for the KDA?

Burce: Is that a prescription or over-the counter

kelly: yeah i think i talked to him awhile ago.. anyways my email is on the kd personal stories of kelly campbell for those who are concerned.

doughboy: I think we just enjoy ourselves and each others company and if some individual wants to make a donation to KD they can!

Coak: yes, Meadow Lake

denny entered the room.

murf: At the moment the cost is $456.75 per person. This is with $50 going to the KDA. we can leav it at that or drop the cost $50 to $406.75 per ticket as Carnival will not match our donation as stated earlier.

doughboy: Believe it or not it's over the counter, my Dr. wrote a prescrition for it, but the pharmacist said it was over the counter.

Coak: Murf: It is still up in the air whether or not we will be on the cruise

Burce: Thanks

kelly: yeah ok Coak yup i got an email from his wife long time ago i think it was gary and his wife???

kelly: from meadow lake yup

Coak: Don't know about wife

doughboy: We need to decide John before I send deposits to Suszane for it.

murf: I'm a little upset with Carnival at the moment, so don't know if I will go

doughboy: Don't wuz out Murf

Coak: Murf -- does that change the whole thought process for the KDA?

Coak: Hi Denny.

Coak: Do we know each other?

murf: We will not made $100 per person for mthe KDA as planned and published

denny: Good morning.

Coak: Murf - are you suggesting that we abandon Carnival & look for an alternate?

murf: Any suggestions?

Coak: LouLou...are you guys planning on the cruise?

LouLou: Murf--don't be upset at Carnival--we know we don't get anything for nothing. Just so they give us good food and safe passage.

murf: If they lied to me this early, what will the cruise be like?

doughboy: Hey burce, I got my approval for my homestead disability exemption, I was notified by the tax office that my school and county taxes dropped from 1,900.00 ayr. and was frozen at 100.00 for both from here on out. I also recieved a refund for the years back from the time I had been diagnosed.

LouLou: John--Sure hope to--seems like a great time.

Coak: Denny, where are you from?

doughboy: Let's have some fun, just being able to me with you all and see ya makes me feel lioke it will be a great trip!

murf: I would like the membership to decide whether or not to cancell the cruise or go anyway

Burce: Another suggestion: We could take a Cherokee Springs Lake cruise. We have a paddle-boat down at the dock and two people can boat all over the lake ... then the next two ... etc. It is very economical and the weather is great!

LouLou: TJ--did you go thru your local county tax office? That sure sounds great.

doughboy has left the room.

Coak: Lat's poll here just for sh---s & grins: How many of the 8 on line now are planning to go?_______

murf: Burce LOL

doughboy entered the room.

kelly: not me dont have the funds,,,,

Coak: Burce -- there is a new paddle boat here in my pond. If we wait until the ice melts we can use our yard.

kelly: lol

murf: Ron - TJ did go throught the local tax office for this and I have sent mine in as well. Still waiting an answer.

billeric: Coak, As of right now we are not planning on going.

LouLou: Ron & Mary Lou hope to go.

Burce: Ted, I checked with Georgia and they don't offer any tax relief.

doughboy: Sorry, in Texas it's the law, you get up to 15,000.00 off

Burce: The tax office said that as long as you live in God's Country, that is all the relief you need.

murf: I need to call on Monday

kelly: when is the kd ass going to send out those brochures on kd

Coak: Mary & I can't commit at this time - BUT that issue would not stop us if all else is 100% in gold.

doughboy: It only took about 1 1/2 months for approval after I sent it in.

denny: Dayton,Oh.

billeric: Easy Burce!

Coak: Kelly, It's ass'n: we fired the KD ass.

Burce: A good one!

kelly: huh??? what???

murf: LOL

LouLou: LOL

doughboy: And I agree with Burce, however me being a poor state employee and all, a little monatery help is appreciated.

Coak: Just pulling your leg, Kelly

kelly: lol hahahahhahah ok i get it now//5

Coak: I have a bro in Xenia -- no KD for him.

LouLou: Murf--I know you said that reservations must be in by the 11th of March. Is there any way we could get an extension of say 2 weeks?

doughboy: Hey that would be helpful, then maybe we could set up a type of roster to were we would know how many want to go!

FL-DON entered the room.

murf: No extention but they said they would not give our rooms away if they don't have to. we have no gaurranttee of 15 rooms after the 11th

Burce: Morning Don

Coak: TJ -- are you in or out?

Coak: Hi Don

doughboy: In

Coak: 10-4

FL-DON has left the room.

FL-DON entered the room.

FL-DON: hi all

FL-DON: just doing my taxes

doughboy: How are you this morning Don?

billeric: Mornin' Don

Coak: Burce - in or out?

murf: Hi Don

Burce: Out

doughboy: I have my doooonnnnneeeee!!!!!!!!!!!!!!!!!!!!1

FL-DON: doing well here in sunny fl. in 70's here 2day

Coak: Billeric - in or out?

billeric: Out for now

Coak: Kelly - in or out?

LouLou: Murf--Is it also true that if we send our deposit in now, that if we can't make it and let them know within 60 days of the cruise, we can get a full return of our monies. Is this true?

kelly: out

kelly: no cash

denny: I'm out

Coak: Don - we are polling about the cruise. Are you guys planning to go?

murf: Ron - let me check...be right back

FL-DON: dont look good for this year john. probably out

Coak: 10-4 -- looks that way for us also.

doughboy has left the room.

FL-DON: cruise is a great idea though

FL-DON: we r taking our second cruise in 2..5 next month. planned last year

Coak: yes, it is a great idea for the ones who can make it.

doughboy entered the room.

Coak: where to, Don?

FL-DON: western caribbean

FL-DON: from tampa

doughboy: sister Louise knocked me off the chat but I'm back

LouLou: Murf--Thanks for all your hard work on setting up this cruise for us. THANKS!!!!

Burce: Ditto

Coak: Say HI to Weezie for me (if she is the Weezie I know)

Burce: Murf, are you 100% healed now?

doughboy: Yes Murf, thanks a lot! So what's the verdict on it! She is Coak, call her Weaser

doughboy: She's been working a lot in PA and Wash DC

Coak: She should call me. She's a lot of fun.

murf: OK deposit is 100% refundable up to the day the full payment is due.

doughboy: She said her and Charley would probably go on the cruise as well as brother Bill and his wife.

FL-DON: what is today's chat topic??

doughboy: I'll send you her e-mail if she okays it and I'm sure she will!

LouLou: If Louise is working the PA and DC area--tell her to get in touch with John and Ron.

Coak: Cruise, etc.

FL-DON: etc?????????????

Burce: Topic! We don't need no stinkin topic!

doughboy: Can do!

FL-DON: sorry!!!

LouLou: Thanks for checking Murf.

Burce: What would you like to talk about Don?

doughboy: Is it on or OFF?

FL-DON has left the room.

FL-DON entered the room.

FL-DON has left the room.

FL-DON entered the room.

murf: That is 100% refundable until Sept 28, 2005

FL-DON has left the room.

FL-DON entered the room.

Coak: OK, this informal poll has five attendees for the cruise + Susanne & Terry + the 2 others that have sent in the $$ =8 cabins IF my math (& info) is correct.

Burce: Don, are you having trouble staying connected today?

FL-DON has left the room.

FL-DON entered the room.

FL-DON has left the room.

LouLou: Hey Don--you are in and out of the chat. You need some time in the casino.

FL-DON entered the room.

FL-DON has left the room.

Coak: Don, Stay inside, shut the door & lock it.

FL-DON entered the room.

doughboy: Louise says they are going, so does brother Bill, will be sending deposit early in the week

FL-DON: how dfo you log off this chat?

Coak: 10-4 TJ -- Thanks for that info.

Burce: Don, are you multi-tasking today?

FL-DON has left the room.

FL-DON entered the room.

Burce: Don, get out of the browser when you log off.

billeric: Don's nervous today!

Coak: Don - you just created the "etc."

murf: OK 8 cabins is the minimum to get a cruise director

doughboy: HAh Hah! Good one

FL-DON has left the room.

Burce: If you don't change internet pages, you log right back on to the chat.

doughboy: murf you have to go Bud, cruise would not be the same without you!

murf: Quick some one lock the door

Coak has left the room.

Coak entered the room.

murf: OK Burce it's up to you or me to save the chat

Burce: I need to log off so we can head out to the lawn and garden show. Everyone take care and stay healthy.

Coak: Don - didn't want you to be the only one

doughboy: Lou where are you from, will look forward to meeting you and everyone else!

kelly: lady;s and gentleman. if you guys want YOU CAN ALL POOL TOGEATHER TICKET FOR ME TO ATTEND THE CRUISE LOL just jokes

LouLou: Don't forget--you don't have to be a KD'er to go on the cruise--bring along a friend.

Burce: Sorry Murray. I've got to go.

doughboy: By Burce

Coak: LOL, Kelly.

Burce has left the room.

kelly: lol

murf: On problem Take care Burce

Coak: Bye Burce -- thanks for the assistance.

doughboy: Kelly, if I win theLottery to night I'll pay for all of you! LOL

kelly: wow cool that would be awsome doughboy

LouLou: TJ--this is Ron and Mary Lou from Lancaster, PA. Met Louise and Bill at conferences.

murf: I need to buy a ticket

kelly: thanks lol

doughboy: Wouldn't though!

doughboy: Okay Lou and Ron hope to c u there!

doughboy: Bills full of bS isn't he!!

LouLou: SURE IS!!!!

LouLou: You have a great and caring family.

doughboy: Problem is he learned it from me, so if you go you better where boots, it's liable to get deep!!!//1

murf: I guess we still need to decide if we still want to donate $50 per ticket and keep the price at $456.75

Coak: Murf - would you also pls SAVE this chatwhen over -- This is 1st time & when I bounced off/on I don't have the whole thing on my screen. I'll save it also when over.

murf: No problem. You'll only be able to save from the last time you logged on.

Coak: You know, with that family all on the boat at one time, there might be listing to one side

Coak: 10-4 -- thanks

doughboy: Hey Coak I heard this was you first time and I told Murf yesterday he might want to save it also just in case, you never know!//15

murf: I think the decks might get slippery

doughboy: That'sa low blow, Coak, but you are probably right!!

LouLou: Murf--I think we should reduce the price to the original quoted price and let anyone who wants to make a donation do so. Maybe we could find a way to get a group collection once we are on the cruise.

Coak: You really got me pegged correctly. If there is a way to screw something up, I'll find it.

doughboy: Hey Murf, you too, Brutus!//6

murf: LOL

murf: I'll be adding to the pile

doughboy: Good

kelly: Well my american, friends, got to go, its always a pleasure to join the KD CHAT!!. bye all untill next time.

murf: Take care Kelly, stay warm

doughboy: Bye Kelly e-mail me sometimes, that goes for all of u

LouLou: Kelly--Stay healthy. Good bye.

kelly: yes i will thanks

billeric: Bye Kelly

kelly: bye all

kelly has left the room.

Coak: Bye Kelly. Good talking with you. New subject -- Abilities Expo

doughboy: What's that

Coak: Have any of you attended the Abilities Expos?

murf: Are we able?

Coak: lol

billeric: nope

doughboy: Murf, I think wee have been had again!!

denny has left the room.

murf: Whats that John?

Coak: One has been added in Houston this year. In metro areas of NY, Chicago, Detroit, No & So Calif

denny entered the room.

doughboy: When someone finds out whats happening on the cruise issue please let me know! until then everyone be safe, careful and try to be as good looking as me, nah, not possible!!//2

billeric: Got to run guys .(Well wobble anyway). No falls till next time.

billeric has left the room.

Coak: bye guys

murf: Take Care TJ. See you next week

doughboy: Yeah lets eat at Land and cattle?

denny has left the room.

murf: See ya Bill

Coak: Type in Abilities expo in Google and then look at their website.

doughboy: will do

murf: ok I'll have to check it out

LouLou: I should have said something earlier, when there were more in the chat but, Terry's father passed away this week. Take time to send him a sympathy card.

doughboy: Bye ladies and gentlemen! You too Coak! hah

Coak: It's reportedly drawing 3-5000 folks to ea city for the show (3 days each) to showcase now/old products for us crippled folks.

Coak: Bye TJ.

doughboy has left the room.

LouLou: So long TJ. Don't lead Murf astray.

murf: WOW was it something we said? we're down to 3

Coak: Ron - I'm embarassed that I did not do that at the beginning of the chat. That was the only thing I had to do & I forgot it.

Coak: Murf - Good job on the cruise. Looks like you've got a great group!

murf: We'll have to send an e card

Coak: Please send it, Murf, from the BOD.

LouLou: You have been doing a fabulous job with the cruise. I think signing up now and if something comes up--cancell. You will only be able to get group cabing and group rates till the 11th.

murf: OK I'll not cancell but still upset with Carnival

Coak: I understand.

Coak: I would get the HC rooms only for yourselves.

murf: OK Ron I'll probably send in mine too.

Coak: IF the info I got was correct, they are up higher, but at the same group rate quoted to you.

murf: If they don't change their minds on this too.

LouLou: Hope not.

LouLou: Since we have to abide by the contract so should they.

Coak: Mary & I will try & make it -- just not in the cards at this moment.

murf: Ron will you be bringing your scooter?

Coak: You taking yours, Murf?

LouLou: Good question--Terry said that he made out ok on a cruise with the scooter. I'm thinking about it. It would make it easier.

murf: I don't think so but I might think about bringing something

murf: It's a big ship over 700 ft long and 130 ft wide

LouLou: Something--do you mean just a manual wheel chair?

Coak: I just used one for 1st time in Disney in FL -- great!

murf: Ya or a walker with a seat

Coak: You can read about it in ther next "Laughter" that I sent to Susanne & Terry before his Dad died.

Coak: ..........It only flipped over once.

murf: Did you hurt yourself?

LouLou: You can fall off the seat after a few drinks. I think the chair would be safer for us.OL

Coak: I'll send it to you 2 as soon as this chat is over.

murf: Were you drag racing?

LouLou: LOL LOL

Coak: ........ read it in 3 minutes......

Coak: It doesn't hurt today, hardly at all.

murf: I'll be speading my time in the bar and the casino

LouLou: Only your pride. Right?

Coak: Besides, they would only have taped up the chest for the broken ribs.

Coak: OK, let's END CHAT

Coak: END CHAT

murf: gone to saving

 

END CHAT