Kennedy's Disease Association

"Every day parents-to-be wonder whether their child will be born with this DNA defect"

Kennedy's Disease Chat Transcript  01-15-2005

Topic:  Open Forum

Host: Terry Waite

Chat Participants:

TerryW
murf
LouLou
Gary_KS
doughboy
stevefu64
MikeG
Simon
denny
Bruce
FL-DON
billeric
duane

BEGIN CHAT

TerryW entered the room.

LouLou entered the room.

TerryW: Hello

LouLou: Hi Terry. How was your New Year?

TerryW: it was good. Yours?

LouLou: Hope it was healthy for you. Mine was great. Fairly warm and no snow.

TerryW: Tons of rain here for weeks on end and many feet of snow above us

LouLou: I hope you weren't affected by all the rain in California.

TerryW: nope

TerryW: rivers were very high

Bruce entered the room.

TerryW: Hi Bruce

Bruce: Morning

TerryW: Had a crisis about a week and a half ago. Lost a hard drive

TerryW: still recovering

LouLou: Next time you send notice of chats, try to include chats will be in the 1st and 3rd Sat of each month.

TerryW: we had all our digital photos on that drive

LouLou: Good morning Bruce.

murf entered the room.

TerryW: Lou dont Hi murd

TerryW: hi murf

murf: Good morning

TerryW: Lou don't you think that may confuse some

murf: Looks like a BOD meeting

LouLou: Hi Murf. How is all that rain treating you? How is your broken foot

TerryW: I always send a reminder before each chat what would I do on the 3rd sat chat reminder?

TerryW: send

murf: I finally got a shoe one last week

PA-Paul entered the room.

Gary_KS entered the room.

murf: Good morning Paul & Gary

Gary_KS: Good morning, Gary Uchiyama from Kansas City

PA-Paul: yes good am

TerryW: OK Lou I know what you mean now just a reminder of the change

TerryW: Hi Gary

TerryW: hi Paul

LouLou: Hi Gary and Paul.

PA-Paul: hi terry

doughboy entered the room.

TerryW: hi doughboy

PA-Paul: hello ALL

murf: Morning tj

doughboy: Hello everyone

doughboy: Hi Murf,

TerryW: Its been getting much tougher for me. My strength is really going downhill for some reason.

murf: Too much coffee this morning, my hands are shaking

TerryW: could be to rhe cold

TerryW: my fingers are frozen

stevefu64 entered the room.

TerryW: morning steve

murf: Terry - you need to put more meat on your bones

stevefu64: godd morning terry

doughboy: FYI , remember at lunch a week or so ago I told you about filing for your disability tax on school and county? Well, I got mine and it saves me half. Plus they are giving me a refund from the time my Dr. found out I had KD

TerryW: I lost all that weight and can't even gain it back. not even over the holidays

stevefu64: sure is cold here this morning in sask

murf: Great news TJ!

TerryW: Great doughboy

doughboy: Have you filed yours Murf!

stevefu64: how much weight u lose rerry??

stevefu64: terry

TerryW: I turned my C-pap in against my Doc's orders

MikeG entered the room.

TerryW: I could not use it

murf: I filed for the tax but I don't think I got it this year

TerryW: Steve, almost 30 pounds now

doughboy: Is anyone else having a problem with their chest muscles hurting? I can't use mine at all without them really hurting!

TerryW: down to 139

stevefu64: be rite back going to see if my car is plugged in

denny entered the room.

stevefu64: ok terry

PA-Paul: are you guys talking about Tax as in local state type taxes

TerryW: Dough I get that at the end of a long day

doughboy: Terry, I could not use a C-Pap either, so I went to the Bi-Pap and it's 10 times better and easier to use!

murf: School tax is cut if you're disabled

LouLou: What is a bi-pap?

TerryW: I tried 2 different types Dough but I turn over in bed so often that the hose wraps around me

doughboy: Ya'll just call me TJ, yes PA, these are school taxes and county taxes.

TerryW: wakes me up

Simon entered the room.

PA-Paul: wow i will check with my local tax people

TerryW: Hi Simon

TerryW: hi Denny

TerryW: Hi MikeG

MikeG: Hi terry

denny: Hello.

Simon: Hi Terry, I am very new to this - believe it or not!

murf: Terry - you need to find something that will work. This condition can kill you

TerryW: Bi-Pap is a device that helps prevent sleep aphenea

doughboy: A Bi-pap is like a c-pap but it lets you breathe out without the mask collapsing on your face, it also has a humidifier on it.

TerryW: Keeps airway open at night

TerryW: forced air\

MikeG: Terry, did you want to get down to 139 lbs?

TerryW: No mike

LouLou: I guess you must have SS disability before trying to get tax reduction. Right?

MikeG: oh

TerryW: I am bones

murf: Good turnout today!!

TerryW: yes

doughboy: Terry, I also had your problem of tangling up, that's why for the last 3 years I've slept in a easy chair, you don't turn over.

PA-Paul: Terry I wish I could give you some of my weight, all i still can do is eat

LouLou: Bones and brains. Not a bad combination.

MikeG: I was at almost 170 and now I'm down to 152 and feeling much better

LouLou: Bones

TerryW: Sorry paul :(

murf: Me too Paul LOL

doughboy: Lou, you do not have to be on SS toi get the tax break, you only have to meet the definition of disabled, which the school district sent me an affidavit which my Dr. filled out and I sent back in. It's that easy!

TerryW: My neighbor is putting my horse fencing in for me at no charge and I feel obligated to try to help him what I can but my legs keep giving out on me and I collapse

PA-Paul: which state are you from TJ

MikeG: it's much easier getting around when you don't have much baggage but there is a limit to how much you should loose...

doughboy: Me too, Murf can verify that.

FL-DON entered the room.

doughboy: Texas, I live close to Murf

TerryW: its on a hill with a 20% grade inclone

PA-Paul: ok

TerryW: Incline

FL-DON: GM ALL

TerryW: Hi don\

Bruce: Morning Don

TerryW: Dang fingers

doughboy: Morning Don

murf: Morning Don

MikeG: morning don

doughboy: Where are you from PA?

PA-Paul: just outside allentown north of phila

stevefu64: back

LouLou: 2o% grade isn't bad if you are going down. Up---that is different.

murf: How cold is it in Canada this morning Steve?

doughboy: Well, contact your tax office at the school and see what they say.

PA-Paul: will do

FL-DON: i have fallen more going down hill, than going up hill!!!!

stevefu64: minas 40

TerryW: DOwn is real bad for me seems like the muscles used to go downhill are weaker and legs give out more and ankles

stevefu64: really cold the car wont start

doughboy: I just have been ordered by my Dr.'s to not go back to work, I'm going to have to file SS eventually

murf: Ouch That's to cold

TerryW: - 40 :O

MikeG: it's cold here too - 61

stevefu64: yes and thats not including the windchill

murf: 41 deg F in Houston this morning and that's cold enough for me.

doughboy: Hey Murf lets do lunch next week, I'll show you my new car I bought yesterday!//4

Bruce: Not only is the temperature cold up there, Steve, the wind is usually quite bad from what I can remember.

MikeG: Houston is cold at 60

FL-DON: yup, only 59 deg here in Tampa

TerryW: what kind doughboy?

murf: Cool - Let me know when

Simon: Sunny in San Diego! - Guys - during the KDA conference one of the doctors talked about drugs that have showed useful signs. One was called Celastrol - anybody tried it? It wsa a NSAI - anti-inflamatory but with useful side effects.

TerryW: Useful side effects?

Simon: Apparently helping with KD

Simon has left the room.

doughboy: When you feel like it buddy, just let me know, I have 2 holidays next week MLK day and Confederate flag day, us state employee's don't miss out taking them either.//3

PA-Paul: Simon- i am trying to get more info on the other drugs they talked about,, the finasteride i thought they were starting trials

Simon entered the room.

doughboy: Hey Terry, believe it or not I alway's wanted a sporty car, even though it's not very practical, I bout a Chey Monte Carlo Super Sport.

murf: I'll check my calander Monday, got a few meeting next week and call you

TerryW: Cool

stevefu64: i started takin clobazam for muscle twitches and fasiculations about 2 weeks ago

Bruce: Simon, La Jolla is still my favorite place on earth ... I especially like Blacks Beach.

murf: TJ - can you get a chair or scooter in that thing?

Simon: Yes LJ is nice but expensive.

doughboy: They gave me a new medicine for my muscles, but it drugs me out so bad, I can't take it. Don't rember the name.

murf: How big is the trunk?

doughboy: Hell no, Murf!//2

TerryW: Terry had to step out - our neighbors are down welding our cattleguard and he needs to be out there with them! Susanne signing on...

doughboy: Trunk is very big!

FL-DON: got my tape of medical discussions at the san diego conference. lots of interesting stuff on it!

stevefu64: yeah all they ever give me is anti convulsants meds for my kd since my diagnose;s

FL-DON: good job terry

Bruce: Morning, Susanne

stevefu64: thats what they give people with apletic seizeurs

FL-DON: good job Susanne

doughboy: Hey Murf, it will fly!//3

murf: You might be able to do something with that if you have to TJ

TerryW: I was just out in 35 degree weather taking shots of the fog rolling in down the valley floor - just below us about 1,000 feet - we are at 2,500 feet... it looks so cool - some of the mountain tops below us are sticking out like islands - like a sea of fog. Hope it stays down there and doesn't make its way here - right now sunny and blue skies!

TerryW: Morning all...

murf: I guess you can fix your speeding tickets

doughboy: Good morning to all!

denny: Good morning.

FL-DON: gm s

murf: Morning Susanne

doughboy: Well lets just say I don't reall have to worry about that!//2 //2

Bruce: Deeny, did you have any of the ice storms and flooding?

TerryW: Oops, not them - Terry signing back on... til they get here!

LouLou: Do any of you have trouble with involuntary head jerking? I have been getting it lately, usually when I am tired.

doughboy: Yes!

stevefu64: yes i do sometimes yup

FL-DON: did a cruise 1st week of jan on the carnival clebration. no problem getting around with a scooter

murf: Me too

TerryW: I am back

denny: No flooding at my house.

Bruce: Not really, Ron

murf: Where did you go Don?

doughboy: Hopefully my filing for SS won't take 2 long, Murf

MikeG: no head jerking but a lot of cracking when I move my head

LouLou: It is the first time I hac this condition. Is it usually when you all are tired also?

murf: We need to plan the conference this year. Any volinteers?

FL-DON: sailed out of jacksonville, fl to key west, then to nassau, bermuda, then back to jacksonville. nice trip

doughboy: Also stressed

Bruce: Now I have the grinding sound from a couple of bad vertibrae

PA-Paul: Conf Question?? does anyone remember name of Dr or of Group that talked about the drug Finestaride??

denny: The ice was north about 30 miles.

murf: We're thinking about Florida, NOLA or Vagas

PA-Paul: murf i thought we were not having one this year

murf: Or central US somewhere

Bruce: The weather has been pretty nasty for many parts of the country. My niece in Indiana lost power for several days and had to move into a hotel.

Simon: PA Paul yes I have something like Finasteride in my notes

FL-DON: orlando has many many hotels of every type and price range

doughboy: I'll help you Murf, if you want me too! Since you are upper management we can meet for lunch and you can put it on your expense account! //1

FL-DON: anfd disney close by along with cape canaveral

MikeG: just don't plan it during the summer...

murf: Paul - lots of people have expressed interest, do we want one?

PA-Paul: Simon if you can find the names of drs or group PLEASE email me

doughboy: Vegas would be great or Florida

denny: Lots of power outages near Dayton.

Simon: Dont know who said it may be the same one as celastrol

billeric entered the room.

Simon: Thanks Paul - will do

Bruce: Bill, I understand that your rivers and lakes are pretty full down there.

doughboy: Murf, what is Nola?

duane entered the room.

stevefu64: well got to go all of my kder;s take care all bye

doughboy: By steve

stevefu64 has left the room.

MikeG: The big easy

TerryW: Susanne back again - follow the bouncing ball!

doughboy: Louisanna?

LouLou: So long Steve.

murf: Nick Prospero was the Dr. that wants to do a clinical trial with Finasteride

TerryW: Conference Murray or get-together/meeting?

MikeG: yes

murf: NOLA = New Orleans LA

PA-Paul: murf where is he from

doughboy: Hey, that's good

billeric has left the room.

Simon: Hi Duane hows the farm?

murf: Conference or get together, Feeling out the group.

doughboy: Whatever!

murf: Paul - NIH

billeric entered the room.

duane: hello all

PA-Paul: thanks murf

doughboy: I

doughboy: Hi

TerryW: PA-Paul - The slides from the doctors/researchers from the conference are on the KDA site under 2004 COnference and Symposium section - I bet if you thumb through those you'll see who had Finesteride in their slides. I believe NIH, Buck Institute and maybe Lenore Beitel were talking about it. Sorry I can't recall from the Conference who mentioned it in their presentation because I attended the private symposium and they ALL were talking about it.

murf: I look forward to xseeing every one once a year. I'll miss you all too much if we don't have one!

PA-Paul: thanks terry

billeric: Good morning you guys. Sorry I am late. My confuser wasn't up to it this morning.

TerryW: Its Susanne PA_Paul - I'm now stealth!

Simon: Thanks Terry - too

TerryW: Should log out and come back in as myself - but I don't recall how! Terry's down by the cattleguard now!

murf: Is Nick's presentation on the web? It's in that one.

TerryW: Yes.

doughboy: I'd like to meet everyone, I think the fellowship is greatly needed. Besides I'm getting tired of only seeing Murf, he's an ugly mug!//

doughboy: Just Kidding Murf//3

murf: LOL

PA-Paul: thanks Susanne I did try looking over the kda site but could not find anything about the drug

TerryW: All presentations including the other speakers from the Conference are posted - such as the Mobility Aids, FInanciaL Planning, Health insurance and Emotionality presentations.

TerryW: PA-Paul - did you go into the Powerpoint slides?

FL-DON: i talkedf to john mengel's wife pauline last night. she's doing ok, but misses john very much. they were marriewd over 45 years.

murf: I have a face only my mother could love!//1

PA-Paul: I am not sure, maybe I missed them

TerryW: Finesteride is a potential drug - there was another one also close to it in name, but can't recall - they were talking about going to clinical trials perhaps Spring 2005 - We need to follow up with the researchers and see if they are still targeting that date for a clinical trial.

TerryW: If interested in signing up to be a part of a clinical trial - you can do so on the NIH's Web site.

Bruce: Thanks for the update, Don. I can't even imagine how tough it must have been on Pauline.

doughboy: Nah, I like you, your a pretty great guy, hows the broken foot doing!

murf: I have my hand up for that one. Any drug they want to use!

FL-DON: mike & i miss jonhn also. he always had a smile on

TerryW: Wow Don -45 years. I am so sorry about John's passing. I really wanted to meet him and never got the chance.

TerryW: He's missed here on the chat's - he was always here.

LouLou: John Mengel will be missed. He was very good on the computer and always ready to help anyone with questions or problems.

PA-Paul: I did try to search for "fin" on the NIH site and found some other trial

FL-DON: he always wanted to meet u & terry also susanne

FL-DON: but life goes on

murf: Missed greatly!!

Bruce: Don was one active guy

TerryW: We received some additional donations in John's memory this week.

murf: TJ - Got a shoe on last week//2

doughboy: Hey, I would like 2 do that, Terry. Where do I send it?

TerryW: I'm going to go look on the site to see if I can find the Finesteride stuff... if I get bumped with Murray or Bruce or Ron save this chat?

Simon: I have just come off the Neurodex (DM/Q) trial Dr Smith (@KDA conference) had me on. Swollen hands - perhaps the Q.

Bruce: Sure

murf: No prob's

FL-DON: i was at the meeting of the computer club on wednesday with 200 in attendance, and they had a poster about john's passing, and donations to KDA

TerryW: All KDA donations go to : Kennedy's Disease Association, P.O. Box 1105, Coarsegold, CA 93614 - they are tax deductible in the US

Bruce: WOW - that is really great!

doughboy: Thanks a bunch!

TerryW: Don: That's very nice of them and Pauline to direct donations in lieu of flowers to the KDA.

MikeG: are you setup to take online donations?

TerryW: We've had a few individuals who have passed in the last 5 years and many families do this very generously and unselfishly.

FL-DON: john use to work afternoons 4 days a week helping the seniors here with puter problems. he was highly regarded

murf: Mike - Donate button is on the home page

MikeG: ok, tnx

FL-DON: mike, we should give the online homepagew to the computer club for the newsletter, and for the poster

TerryW: Yes - we can take online donations - there is a section on the site for donations - there is a button I think that says "DOnate Now" that takes you to a site that allows you to donate online with a credit card. However, please note when you take this route they take 3% of the money to process the donation, whereas if you mail a check, money order or cashiers check, the KDA will receive 100% of the donation.

MikeG: good idea

TerryW: This is great - When we were chatting on the MDA site, we were never allowed to talk about donations or fundraising!

FL-DON: we'll work on it susanne

TerryW: Now that we have our own chat we can say whatever we'd like!

TerryW: Well to a point!

TerryW: I forgot that "line" or "box" is gone now and we can talk about donations!

MikeG: ok, I'll go the check route.

TerryW: I should set up a chat topic for year-end summary and 2005 plans...

FL-DON: i'm a cc junky

murf: What ever we like? $&#&(&^)&^)*&_) disease anyway!

FL-DON: go murf go

LouLou: Duane--How is Lori? How is Boyd?

murf: HI Duane, we missed you

doughboy: What, a great turnout today! It was nice seeing everyone here! I'll send a money order, Terry, this week. Murf let me know about lunch, Monday or Friday will be best for me! I've got to go now cause I'm getting tired, bye everyone and have a great week!

TerryW: Whichever you prefer MIke. We appreciate the donations - they allow us to keep the site up, pay minor expenses such as postage, etc. and also will allow us to fund more research grants and the mailer (if I can ever find a moment in my hectic schedule to talk with the mailing house)... its a simple thing really - I have to make it a priority!

TerryW: Thanks Doughboy and Mike.

murf: I'll call TJ take care

doughboy: your welcome!

TerryW: Thanks to everyone who has made a past donation - we wouldn't still be here without your help!

TerryW: And that is donations in money and time!

doughboy has left the room.

LouLou: So long TJ. Stay healthy.

duane: Lori is fine. Thanks for asking. I've been extremely busy the last few months, and have missed out on the chats. good to join in agiaiin

TerryW: In order to continue the KDA's worthy efforts, we need your support. There are many ways in which you can help the KDA and those who live with Kennedy's Disease. Here are 5 ways that you can help the KDA: 1. Click Here to make a credit card donation through the SECURE SERVER at "Network for Good". Network for good is a service that processes and routes credit card payments to non-profits. They do take 3% of the donation as a processing fee. To read more about Network for good and its policies Click Here. 2. Send a check or money order tax-deductible donation to: Kennedy's Disease Association P.O. Box 1105 Coarsegold, CA 93614-1105 3. Make a stock transfer through www.ameritrade.com . Contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it to get more information regarding this type of transaction. 4. Remember the KDA in your will, living trust or memorial request. 5. Get involved with the Kennedy's Disease Association. Donate your time or services.

TerryW: Dontaion page: www.kennedysdisease.org/help.html

TerryW: Page for Conference presentations: www.kennedysdisease.org/2004postconference.htm

PA-Paul: thanks

Bruce: Sorry I haven't been too conversive today, but I have two neighbors that I am watching through my office window cutting down a 100+ foot tree. I am a little nervous because it is close to the house.

LouLou: Thanks Susanne. Knowledge is power.

murf: Bruce - Keep your head down!

FL-DON: gotcha susanne

Bruce: It just fell. WHEW - everyone is okay and it fell where it was supposed to.

murf: You must have pro's cutting!

denny: Good job.

Simon: Terry / susanne - May do that (help) - I am still active, but feeling and seeing the loss of muscle. Will write for receipt ref tax return this year for last 2004. Bye for now.

Bruce: No ... just some good neighbors. We had another neighbor come up this past summer and fell about 15 trees that were dead or struck by lightening.

Simon has left the room.

murf: Bye Simon Take care

TerryW: Its not Dr. Beitel or Ellerby's presentation... still looking...

murf: Susanne look in Nick's

FL-DON: i predict minn/pitt in the super bowl this year

TerryW: Thanks Simon.

TerryW: That's where I am now... 1/2 way through Nicks...

LouLou: GO EAGLES!!!!

PA-Paul: yes for the GO EAGLES

Bruce: I don't thinnk the Vikings can do it. They always choke and I do not like Randy Moss ... even though he is some kind of a reciever. I am for Pittsburgh all the way.

TerryW: He's talking about the Leupron clinical trial in Japan...

billeric: I expect the Eagles to blow out Mn. tomorrow.

LouLou: vTwo Penna. teams in the super bowl.

TerryW: Talking about DHT types 1 and 2

FL-DON: the packers fans have been mooning teams for years. they got their just rewards

TerryW: It's Nick's presentation from the NIH PA-Paul... discusing potential clinical trial and phases and potential Finesteride...

FL-DON: reward was a $10,000 moon shot

Bruce: I am certain the TV executives are wanting a team from the north and another from the south so they can get bigger ratings.

PA-Paul: Thanks Terry

TerryW: Slide # 21 in Nick Di Prospero's, presentation...

TerryW: Susanne!

TerryW: : )

LouLou: $10,000 for a fake mooning. Tell them to send the money to the KDA.

FL-DON: rotfl

TerryW: Ya great idea Ron!

PA-Paul: I will go back to the NIH site and look directly for nicks work

FL-DON: who is nick paul?

MikeG: right on Lou!

murf: Susanne you're not looking so good this morning//2

FL-DON: susanne always looks good

Bruce: I also wonder weather NE's defense can keep up with the Colts.

Bruce: whether

FL-DON: good observation Bruce

murf: You're right Don!//5

TerryW: Very funny - how'd you know Murray.

PA-Paul: DON they are talking about niock Di Prospero

TerryW: Hair isn't brushed, sitting here in my robe... TMI huh?

FL-DON: ty

FL-DON: still 100 times better than any of us susanne

TerryW: //5

murf: Me too but I'm as ugly as a mud fence

FL-DON: or a cow pen

duane has left the room.

murf: or pig pen

TerryW: Dr. Smith talked about Neurodex - too bad Simon is gone... if its the same Simon I'm thinking of - he knows Dr. Smith

Bruce: Simon in San Diego

murf: Hopefully he will read the transcript

FL-DON: have 2 go gang, nice chat. cya in 2 weeks, bye

Bruce: Susanne, did you get my email about D&O insurance?

murf: Byr Don take care

Bruce: Take care DON

TerryW: Chats are now the 1st and 3rd Saturdays of every month

TerryW: Yes - got your email Bruce, but back to long hours at work again -

Bruce: Susanne, do you plan on saving the chat?

LouLou: So long Don. Stay healthy till next we chat.

FL-DON: remember, never kick a cow chip on a hot day!!!

Bruce: No problem. Just checking if you received it. Sorry to hear about the long hours again.

MikeG: I'm heading out too - take care everyone!

FL-DON: //0

Bruce: See Ya, Mike

FL-DON has left the room.

denny: Bye

murf: Bye Mike

TerryW: I've been very bad at answering any emails the last couple weeks with the holidays and family coming up both Christmas and then New Year's weekends. My mom and her boyfriend were here 7 days ... just too long to entertain... and then last weekend we did a turn-around Saturday to So Cal for my Aunt's Wedding - she's been waiting 20 years for that day!

TerryW: Take are

PA-Paul: A big thank you Terry & Susanne for the help

MikeG has left the room.

TerryW: Bruce - let

TerryW: Oops - Bruce - lets talk off-line... it would be easier that email I think.

Bruce: I am going to run out (acutally ride the cart) and see how the guys are going in the yard. We'll catch up with everyone at noon (EST).

TerryW: You've covered most of the bases. If there was no prior D&O - then you will be fine.

Bruce: Stay healthy and happy.

Bruce has left the room.

TerryW: The KDA has Markel (carrier) claims made form - that's all you'll find for D&O - they don't offer occurence form in D&O - and we pay $1,000 a year.

PA-Paul: bye all

murf: Talk to you in a half hr Bruce

TerryW: But we're California based, so insurance is more expensive here... I think you could find D&O for $500 - 1,000

PA-Paul has left the room.

murf: See ya Paul Take care

murf: Susanne will you save

denny has left the room.

TerryW: Chat is over in 2 minutes - looks like most of you know that! But you can continue to chat if you'd like to - it will not be captured though for posting and distribution.