Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  02-21-2004

Topic: The New Chat Room

Host: Terry Waite

 

Chat Participants:

Terryw
paul
BUTCH
JohnM
Bruce
stevefu64
Chuck
Murf
Billeric
MICH


BEGIN CHAT


Terryw: Good Morning

paul: oh you tried to reg again

Terryw: Logging

JohnM: Good Morning to all from BEAUTIFUL Florida.

Terryw: Thank you all for showing up for the new chat room unveiling

BUTCH: So far the only winner for the lottery sold at the conference was Ryan Bickle from Portland Oregon. He is Mary Rutherford"s son. GREAT!!

Bruce: I found a new web site that has links and information about handicap software for using your PC's more effectively - http://e-bility.com/links/software.php

stevefu64: this is my first chat and lovin it

Terryw: BUTCH what did he win?

Terryw: Great Steve

stevefu64: thanks

JohnM: Terry, Let us know how we should be handling this one. Does It work just like the MDA room?

BUTCH: Ryan won $100.00.

paul: terry I found an expo called abil;ities its held at 6 different sites across country

Terryw: BUTCH how did the Lotto work, How does the payout work and how did you set it up. It was a great Idea to raise funds for the KDA

Bruce: John, this is the KDA chat. We can talk about most anything including fund raising, etc. It is paid for and sponsored by the KDA.

Bruce: I guess you could say - your donations at work.

JohnM: Terry, I guess we can now talk about fund raising also that we couldn't on the MDA site.

paul: they have a web site the first one is in NY metro april 16-18 @ edison NJ

SusanneW entered the room.

BUTCH: The lottery works off the PA daily evening number. There are 1000 tickets sold at $5,00 each. Each day Mon. to Fri. we give out $50.00. Sat. and Sun. we pay out $100.00

Bruce: When we invite special guests and doctors, they can also talk about the KDA and grants without any problems from the MDA.

SusanneW: Good morning!

Terryw: Hey look whos here

Bruce: Good morning, Susanne

JohnM: I thought sure Don would be here today to check out the new format. He never liked the bottom up style.

Terryw: //1

stevefu64: hi susanne

JohnM: Hi Susanne.

Bruce: The only blond in the group

SusanneW: Well, now that we got two computers - Terry set up a "network" and "wireless router" and we can both get on now! Cool!

stevefu64: lol

Bruce: Susanne, I heard a good blond joke the other day ...

JohnM: Susanne,

SusanneW: Ok Bruce, go for it... I can take it!

paul: southern calif june 11-13 anaheim Ca

Terryw: I have been to Abilities Expos

Bruce: It is too long to type here. I'll send it via email.

Terryw: they are good

SusanneW: Ok

paul: was it any good?

paul: thanks

JohnM: Susanne, OOPS. Had a few blonde jokes the other day but didn't want to make you look bad.

Terryw: Lots of stuff to make life easier at the expo's

Terryw: Also that’s where I found out that I can get a free fishing license for life now

paul: it will be all over the usa

Terryw: also National parks pass for free

SusanneW: BUTCH: What are the dates the "lotto" fundraiser you are doing goes through?

Chuck: They use to have one in Sterling, VA (northern VA) but haven't had for the past 2-3 years. Yes, they are most informative.

SusanneW: So, how do you like this new chat format?

paul: its great

Terryw: I love it, Of course I created it LOL //1

SusanneW: Paul: What do you like specifically?

stevefu64: terry your a intelligant guy lol

paul: can I make my bottom window any higher ?

Terryw: I try

SusanneW: Terry: I cannot go back to read the chat prior to my entering the room to catch up... am I doing something wrong?

paul: sorry I was trying to see what I was typing

Terryw: Although Susanne does the bulk of the KDA work. She deserves more credit

BUTCH: So 1000 tickets at $5.00 will gross $5000.00. Prises during Feb. amounted to $1900.00. Leaving $3100.00 to be donated to the KDA. My lions club did a great job of selling tickets.

paul: a BIG THANK YOU TO BUTCH

SusanneW: Everyone deserves credit - the Board, the volunteers, the associates, the researchers - if it wasn't for everyone working together, there would be no KDA!

Terryw: If you arrive late you will not see any chat prior to entering the room. you will have to wait for the posted transcript to see it.

stevefu64: well am sure happy I found the kd ass

JohnM: BUTCH, let us know how we can buy one of these lotto tickets.

SusanneW: BUTCH took it upon himself to do the "lotto" fundraiser! He advised us he was planning to do this and did so - With a little ingenuity, amazing things can be done!

Bruce: Okay - I can't wait: Three woman were given access to a magic mirror. The mirror would grant one wish to each woman as long as she first told the truth. If it was a lie, the woman would vanish. The Red Head walked up to the mirror and said, "I think I am the smartest woman in the world." PUFF!!! She disappearred. The brunette walked up to the mirror and said, "I think I am the most beautiful woman in the world." PUFF!!! She disappeared. The blond walks up to the mirror and says, "I Think ... PUFF!!!!//2

Terryw: Steve?

Terryw: LOL ass

paul: question is BUTCH are you going to do it again?

Terryw: I get it now

Terryw: Association

stevefu64: yes terry

SusanneW: Terry: Oh, I see - no sleeping in on chat days...

stevefu64: lol

SusanneW: How do you keep a blonde in suspense?

SusanneW: Don't let her see the beginning chat information posted!

Chuck: You did a good job Terry. I think it is fine. I believe it is easier to handle than MDA and you can also see who all is on. Would be nice to see where participants are from (maybe we are the only ones that don't know this).

Terryw: BUTCH where did you get the tickets made up for the Lotto?

Murf entered the room.

stevefu64: //49 music to my ears

Terryw: Chuck, right click on their picture and look at their profile

Terryw: It will tell you where they are from

Bruce: Right click on the Participants and click on profile

Murf: I made it!//0

Terryw: Hi Murf

Bruce: Hello Murray

Murf: Goodmorning everybody!

Chuck: Thanks so much Terry for the instructions - that is great - certainly glad I asked.

BUTCH: Paul--I don't know. It takes alot to sell 1000 tickets. As you know I started selling before the conference and ended up still selling tickets in January.

Terryw: You can pick your own picture

Terryw: the tab at top for profile

Terryw: go there and pick a picture

SusanneW: Hey Murray.

stevefu64: say terry or susanne did u guys send out the info to the neurologists yet

Murf: morning Susanne

SusanneW: I need a donut -be right back!

Bruce: Bring one for all of us, Susanne

paul: that is great and neat too'

Terryw: paul you sly fox

Chuck: What does avatarlcon in the profile mean????? Thanks

Terryw: its just a cute pic to identify yourself

Terryw: for fun

SusanneW: The neurology mailer is actually about 2 weeks from being dropped. We've located a fulfillment house near us, gotten our quotes, and the BOD is just now choosing which mailing list to go with. Quoted one that has 11,000 names, excluding child neurologists and neuro surgeions, but includes practices, residents and researchers - but $400 more expensive and has <10% error ratio... other list has 900 names, 100% guarantee of accuracy, but just to practicing neurologists (again no surgeons or child psychologists, nor residents or researchers)... waiting for final board vote, then we can get down to business and drop that mailer!

JohnM: This takes a little getting used to. It can pove pretty quick.

stevefu64: ok thanks

Bruce: I love the fact that it doesn't 'poll' the chat members when there is no activity. It is easier to read.

Billeric entered the room.

Murf: Susanne - I just sent in my vote for the mailing list. Did you get it?

paul: will they do the mailing to the list?

SusanneW: Test

Bruce: Hello Bill

Terryw: Murf I just got an e-mail saying help you could not get in

Chuck: Oh I see. I didn't realize the pics had a number. I will do one for Chuck after chat.... Thanks for the education...

Terryw: was tht old, I guess so

SusanneW: Cool! We can change our name color too! Or text color, but if text color is different, it might get hard to read, I recommend text in black...

JohnM: Looks like we all kept the same names.

stevefu64: may I ask the room how does u guys feel about neurologists

Murf: I sent it before that one.

Billeric: Hi guys, Sorry I am late . My password didn,t fit the cause.

Terryw: Bruce POll? what do you mean?

Terryw: Hi Bill

paul: they are great if you get a good one stevefu64

SusanneW: I like that this chat format doesn't keep "refreshing" and making the page skip...

SusanneW: Paul: I'm not sure I understand your question?

Terryw: I currently have no Neurologist that I am seeing so I cannot answer tht.

stevefu64: ok mine seems incompetent or maybe he;s just being like that I dont know tho????

SusanneW: I suppose like any profession, there are good ones and those who aren't so great...

Bruce: With the MDA site, it would pulse every thirty seconds or so - I believe to refresh the screen and look for any new messages.

SusanneW: If you are not happy with your neurologist, you should seek another...

stevefu64: there;s only 2 here in sask

Terryw: OK Bruce, Yes it fif an outo refresh every 30 seconds. yes that was annoying

Terryw: it did

JohnM: The three of us here in Sun City Center are seeing the same neurologist.

Terryw: My typos

Bruce: Steve, is there a MDA sanctioned neurologist in Saskatoon?

paul: Susanne I was asking if the fulfillment house actually will do the physical mailing for the money

SusanneW: John: Bet he feels like he won the lotto!!!

stevefu64: no

Terryw: OK I got a new color

SusanneW: Well Steve, that doesn't give you much choice... have you seen the other neurologist?

Bruce: I have a great neurologists from Emory University that comes up to northern Georgia once a month. He is MDA certified and it makes life simplier.

MICH: Neurologists... ??? I've been fortunate to find a good one a decade ago and recently but there's not that much they can do for you... finding KDA was more informative than they are.

Terryw: Having fun with colors

JohnM: Our neurologist works with the MDA.

Billeric: You look pale Terry!

Terryw: I am green

stevefu64: well there;s only 2 here and they both treat me like a lab rat take this and that etc....

Murf: I'm blue!

Terryw: :(

Bruce: Steve, that is too bad. It is tough when you don't have someone you can trust.

JohnM: Isn't this fun. Where is Don now?

stevefu64: yeah but my gp is excellant he seems to know more than my neru

Murf: Mine does the samr thing here Steven.

stevefu64: ok

Terryw: Don wrote , he had someplace to go today.

Billeric: Info only, Just got Walgreens flyer. They are advertising Up-Lifts for 80 dollars. Savings of 20.

Bruce: I heard this somewhere recently for diseases that have no treatment or cure: The doctor will diagnose and say 'addiose' (spelling)

paul: thanks Billeric

SusanneW: At this point, I believe neurologists are good for diagnosing KD - but after that, since there is no cure or treatment currently, other than for symptoms such as cramps, etc... they might now seem helpful because there is nothing for them to do for you.

Terryw: Bruce that’s what the KDA is for. to help those that are told Addiose

paul: I was just about to try getting one

JohnM: Wow, I thought $100 was a good price. They are worth every penny.

stevefu64: how would the insurance companys define kd would thay say ltd till 65 ????

Billeric: Me too, Paul

SusanneW: Adios...

Bruce: Bill, I swear by my uplift seat. I know there was someone that it didn't work for. But for my brother and I it is a great travel aid.

Terryw: Susanne is my spell checker LOL

Bruce: Mine did, Steve

Terryw: Same here steve

Terryw: 65

Bruce: Thanks Susanne for the correct spelling

stevefu64: ok thanks all much appreciated

Billeric: Walgreens No. is 1-866-522-8007

JohnM: I have three Up-Lifts and use every one every day. It is easier than always moving it.

paul: do they have a web site?

SusanneW: I believe that we must help educate our doctors, neurologists, nurses, physical therapists, etc.. if they are not familiar with KD - there are so many different conditions out there, try to imagine remembering all the different conditions, their symptoms, etc. yourself - I think that would be overwhelming. I think there should be a big database online where doctors can punch in symptoms and it would come up with all the possible conditions that have those symptoms - that would be an amazing tool for them!

Terryw: John need to glue one to the seat of your pants

Bruce: I just found out Georgia has a tax credit for disability features added to your home. That was a nice surprise.

stevefu64: yes that would be susanne

SusanneW: Disability insurance Steve?

stevefu64: yes and ccp

stevefu64: canada pension plan

Terryw: I wonder if California has that tax credit, I could use it to put in a concrete friveway

stevefu64: diss

Terryw: driveway

Bruce: The Georgia credit is for ramps, adding or reinforcing walls to put in hand rails, expanding door widths, etc.

JohnM: Looks like it is toooooooo easy to hit the enter key before checking what we typed. LOL

Bruce: I don't remember having something like that in PA, but maybe I just didn't come across it.

SusanneW: I know here in the US that disability insurance runs til age 65 usually... Social Security Disability runs til then also I believe, then changes over to straight Social Security...

stevefu64: ok I asssume its the same here as well

MICH: Because my pickup was totalled out a few months back... I'm about to replace it with a SUV, van or another pick-up to haul my JAZZY and bruno curbsider lift... tempted to get a Venture Chevy Van or Pontiac Montana that has a Turny chair to get in the front seat but don't really need the Bruno Turney yet... has anyone else used a similar Van or Yukon or Tahoe SUV??

Bruce has left the room.

stevefu64: I always read the kd transcripts for the last 4 yrs so I know what’s been goin on all this time lol

Bruce entered the room.

Terryw: wb Bruce

SusanneW has left the room.

Murf: MICH - I have a Toyota Sienna and it works well with my lift (same as yours).

SusanneW entered the room.

SusanneW has left the room.

Bruce has left the room.

BUTCH: How are you Anna Lea and how is Charles?

Terryw: susanne in or out,, pick one

SusanneW entered the room.

Chuck: I am fine BUTCH and Charlie is doing just fine after operation.

Billeric: Your really moving around, Susanne!

Terryw: Susanne sit down stay a while LOL

JohnM: MICH, I have a Toyota Sienna also and have straight Bruno lift. I plan on looking into the lift with the platform that lifts and slides into the van.

stevefu64: terry are u still mobile around the house???

SusanneW: Thought I'd try to go look up this Web site... but I had to leave to do it... Last week I was presented a submission to locate insurance coverage for a lift manufacturer and installer - both home and auto... thought you might be interested in going to see options available... www.macslift.com There are some different photographs online showing different types of lifts - can be installed on vans, autos... and also home stair lifts.

Bruce entered the room.

Terryw: what operation?

Bruce: WOW! I was kicked out and couldn't get back in.

JohnM: I know you asked Terry, Steve, but my moving around the house is all done walking behind my wheelchair when I have my AFOs on and riding when I don't.

paul: Billeric what name do they use in the wallgreens ad I found a web site but they cant find anything like an up-lift seat

BUTCH: Has anyone heard from John Coakley lately?

SusanneW: Not today -but yesterday... via email.

Bruce: John is very busy with a huge project he is leading. I think he is buried at times.

Billeric: Paul, they call it Upeasy lifting cushion.

stevefu64: ok thanks cause I was wondering what the future holds for me in terms of mobility am only 40 and my legs are weak

paul: thanks

SusanneW: Well, no place like the present to announce we plan to go for another Conference in San Diego in October... we have a meeting committee starting... first conference call is next Saturday. We'll announce more details as they become available..

Chuck: Sorry Terry, I thought I had mentioned to you all. Charlie had a hernia operation here in Martinsburg. A few years ago he had an operation and had major problems with anesthesia. We checked this out very closely this time prior to operation. I printed article that was in Quest and took to hospital and Surgeon. Thanks all went well.

SusanneW: We want to make sure that those on the West coast that cannot travel via plane or long distances have an opportunity to come to a meeting also... of course we hope those that can travel (in other states, countries) will consider attending also!

Terryw: Did he have a local this time chuck?

Terryw: Chuck

Bruce: Good point, Chuck, I printed out information on the types of anesthesia that are supposedly more safe than others with KD. My wife has the file and I am providing a copy to my doctor.

Murf: Have we decided how long the next conference will be? 2 or three days.

Terryw: when I had my hernia Operation in Mar 03 I had a local and it worked better

SusanneW: That's great - did they use local anesthesia? That's what Terry did last summer when he had his operation. We brought in printed pages from the KDA site, demanded to talk with the surgeon, nurses and anesthesiologist before the operation to go over KD, weakened respiratory system, etc... they came up with local anesthesia and a sedative via pill for him. It worked fine... plus he didn't have to "come out of anesthesia" after the surgery.

paul: where did you get that list of Anastasia ?

stevefu64: what’s that Bruce aneth

BUTCH: How long will it take to print out or be able to see this chat after the chat has ended?

MICH: I'm excited to hear about San Diego... don't know that I'll be able to afford it... but after I get a vehicle to transport my JAZZY and lift... I will definitely try to save up as it's exciting that the conference will be so much closer!!

Terryw: BUTCH I will have it posted in the next day or so

paul: BUTCH the little disc at the bottom will let you save it.

SusanneW: Recently, we have been advised two KD individuals have passed away. One they believe from complications to general anesthesia for a minor surgery.

Bruce: Go to the online Quest magazine. It was in Vol. 7, Number 3, June 2000

BUTCH: I understand that the chat will be shown in its entirety. Is this correct?

Terryw: BUTCH, Yes from 07:30 - 08:30

SusanneW: Bruce, we should post that to the site - we should have an area for known dangers and KD... perhaps not that exact heading but for that kind of thing... warnings for those with KD.

Bruce: It is called, "Coping with Anesthesia"

Terryw: From where I type Begin Chat to END CHAT

paul: thanks Bruce

Bruce: Good Idea!

SusanneW: Bruce, will you send us the link to remind us?

Terryw: you can remain in the chat room after that to continue talking but it will not be logged

Chuck: No Terry he had general and all went well. The anthologist did some research prior to. Maybe this is a small town and perhaps not as knowledgeable as cities. This Dr. said he would not have muscle relaxants involved at all. They all seemed to appreciate that article.

Bruce: My brother passed away two years ago from complications from surgery (broken leg) where they used the wrong anesthesia even after his wife said they should be concerned.

SusanneW: This is now the 3rd time we've heard of someone with KD passing away after a surgery with general anesthesia... Can we be certain that is what caused it, not necessarily... but I think it is something to be aware of.

stevefu64: gosh that’s terrible

Bruce: Yes, I'll try to link to it again and send it on to you Susanne.

Chuck: I can appreciate getting in trouble with anesthesia. Charlie ended up in ICU for several days after two operations.

JohnM: Terry, I understand there won't be any need to edit the chat. What am I going to do all day Sunday now?

stevefu64: so does anesthesia really affect kd patients

SusanneW: 3 other individuals over the last 4 years that the KDA has been in existence have passed away due to fatty lung embolisms... broken bones.... when a bone breaks, blood clots - the clot moved to the lung. So, if you don't think a little fall can be fatal, please think again and consider using your aides - cane, leg brace, wheel chair, etc...

Terryw: And remember the chat room is available 24hrs a day. So you can e-mail someone and tell them to meet you in here at a certain time and then chat with them for however long you want.

Bruce: John, it is time to retire from your editing career. You have done a great job over the years. Thanks

Chuck: Take your wife out to dinner. (This is Anna Lea - I type for Charlie).

SusanneW: John: You can still match answers to questions if you REALLY feel the need!!! //1

Terryw: JohnM, go fishing

JohnM: AMEN to that using AIDES remark Susanne.

SusanneW: I know - go to Disneyland!

Bruce: I will say it again, Terry. U DUN GUD finding this chat software.

SusanneW: The chat function would be great for "regional chapters" to hold "get togethers", "meetings", etc...

Terryw: thank you

stevefu64: yeah that would be great Susanne

JohnM: We don't seem to wait for the answers to questions that are asked. We are too busy thinking up more questions. //1

Billeric: So true, Susanne. I have fallen twice in the past 6 mos. Black and blue all over the place. I am now a true cane fan.

BUTCH: Susanne--Will the KDA chat be used for board meetings or will you still use land lines?

Bruce: I want to be the first to try that new Japanese experimental robotics muscle enhancer technology. That seems like the answer.

stevefu64: ill bet there expensive hey Bruce

SusanneW: While there are no official regional chapters at this time, we've been asked over the last few years a couple times about them. I know John M., Mike and Don all get together in the Sun City Center area and are forming one others in the region (GA, FL, etc.) can join... if anyone else is interested in volunteering to spearhead one in other areas please let us know! Regional "chapters" would be for camaraderie, getting together in person every now and then, running "chapter" fundraisers for the KDA, holding one day events - such as outings, or bringing in one or two speakers... etc.

JohnM: Susanne, that is a good idea for regional get-to-gethers. I think we'll try for some of that since the chat room is available all of the time.

paul: this chat would be great for any meeting No need for someone to take minutes

MICH: John, you're the first one I know to have used an AFO... my neurologist suggested one for me to cut down on my wobbling... but I found it to be awfully hard on the bottom of my foot and that the demo was not all that big but the one I finally got made me feel like I was overdressed to be a hockey goalie! Are there other's with KD using a AFO??

Terryw: 2 min until end of chat logging

SusanneW: BUTCH: Interesting idea... but I believe the KDA Board Meetings will still need to be held via teleconference... There just are too many things chat/email can't do... One is misunderstandings can take place since you can't hear inflection or tone of voice, we frequently have debates and discussions prior to making decisions, etc... And, I'm not sure if the rest of the board would like to type out their responses and compete with my typing skills!! : )

Terryw: I may log for a bit longer today

Bruce: Steve, I am hoping you can buy the muscle enhancers at Walmart someday.

paul: Asta la vista gang

SusanneW: AFO?

stevefu64: yeah

Terryw: bye paul

SusanneW: Bye Paul.

paul has left the room.

Bruce: Take care Paul

SusanneW: Anyone who wants can stay past and keep chatting...

stevefu64: by paul

JohnM: Susanne, AFO (Ankle Foot Orthotic)

Terryw: This chat room does not shut you off automatically

stevefu64: cool

SusanneW: Paul: It sure seems like it would be easier for minutes taking, but the Corporate minutes are not meant to be a transcript! They are simply a log of board motions, vote outcomes and decisions made. I'm not sure we'd want to log everything said! Especially some of my comments along the way!

SusanneW: Thanks John.

Chuck: Susanne/Terry - did you get my e-mail on participants re: Ohio Univ. and Univ. of PGH.??

BUTCH: Susanne--I just thought that if the board were to chat--It might stimulate interest among the other KD'ers. They could see what is being said but could not participate in the discussions.

JohnM: I have two AFOs and they protect my feet from ankle breaking if I do happen to go down. I fell a couple years ago and ended up in a wheelchair for three months and don't want that to happen again.

SusanneW: Perhaps we should have a chat session with the BOD on chat for a question answer period? Well. you pretty much have that any time... today you have 4 board members out of the 5...

Terryw: I hear Susanne in the next room typing a big msg LOL

Terryw: get ready

stevefu64: lol

BUTCH: One other thing about the lottery that we did. Now there are at least 1000 other people who know about Kennedy’s disease. I gave out alot of flyers about Kennedy’s.

SusanneW: I can't recall or not about the BOD meetings if they are to be closed due to our articles of incorporation or not? For the most part the KDA does not have "members" in the legal sense of the word and the "members" do not vote or make policy. But we do appreciate suggestions, ideas and listen to those who are associates of the KDA.. Something we have been talking about doing is putting up a section on the KDA site to show what the BOD are up to. We have project lists and lots going on behind the scenes. When we're pretty quiet, you can bet a lot is going on, but not ready to share with everyone yet!

Terryw: that is great BUTCH, and they in turn may pass on that info on KD

SusanneW: BUTCH: That is so awesome!!!

Bruce: Well, I need to adios... I have some things to do, places to go, etc. It was great chatting with everyone today. Take care - stay healthy and happy.

Terryw: bye Bruce

stevefu64: bye

Bruce has left the room.

JohnM: Terry, I just save the chat and found that I only got from the time that I signed in. I there a way to save it all?

SusanneW: Ya, we need to get going soon too - off to Yosemite with my brother and his girlfriend who are visiting!

Terryw: no Bruce you need to be here when the start time is to get it all. I have it all though

Terryw: I mean John

Chuck has left the room.

Terryw: I have saved it all

Billeric: Sounds wonderful, Susanne

BUTCH: So long to all...Stay healthy till next we chat.

stevefu64: bye bucth

Terryw: John would you like me to send it to you for you to do your thing>

SusanneW: John: Do you really want to work on the chat today - are you going through withdrawals... if so, Terry can send it to you!

BUTCH has left the room.

Murf: Got to go. Take care all

Murf has left the room.

SusanneW: Bye Murray.

JohnM: Terry, maybe we can try it just once and see how it works.

Terryw: I think I will stop logging now

SusanneW: Aha - he's addicted!!!

END CHAT