Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript
10-06-01
Topics: General Discussion/Open Forum

Chat Participants:

  • john-c
  • kdfl
  • terryw
  • shack

Begin Chat

terryw -- {welcome terryw}

kdfl -- {welcome kdfl}

kdfl -- Looks like a slow start again.

terryw -- yes it is

terryw -- hi

kdfl -- I thought I was late in getting on but I guess I am early.

john-c. -- {welcome john-c.}

terryw -- yep,,I guess unless we send out a reminder people don’t know about the chats,, I guess they do not look at the schedule

terryw -- how have you been

kdfl -- I have been pretty good. No mishaps lately as along as I am very careful. I'm using my scooter much more lately.

terryw -- that’s great kdfl

terryw -- hi John

john-c. -- I'm going to be the newest & slowest. Hi everyone.

kdfl -- Who might John-c be and where is he from? I don't remember him being on before.

kdfl -- John-c, don't worry about being the slowest, we'll wait as long as it takes.

john-c. -- New man on the block. Some rudimentary info in the guest book. ,,,Westminster, MD.

terryw -- welcome John glad you made it

terryw -- today is open forum

terryw -- any topic

john-c. -- I'm an outspoken optimist with a sense of humor and about 30 years of all of the symptoms. Probably different from you all in that I've had 2 mastectomies, 1st 30 yrs ago: 2nd one last November.

terryw -- how do you feel about that John,, I have not had the enlarged breast problem?

terryw -- yet

kdfl -- I've had all the symptoms for at least 25 years.

john-c. -- Can't get around as good as before: this has really tanked in past 2 yrs/worse in last 6 months. Terry: I'll answer that in a minute.

kdfl -- I had a lump in my right breast quite a few years ago and had it sucked out when that was removed. My left one is enlarged but I'm the only one who sees it and I don't mind what it looks like.

john-c. -- 30 yrs ago it became a big deal because the Dr. thought breast cancer & scared the hell out of me & the family. Gave me the "get it all in order" talk, etc. After the operation, all was OK: got a lot of timely

gag gifts. Mine hurt & had to come off. Went through life telling kids not to get nipple rings.

john-c. -- My 2nd one just hurt and became engorged: Neat DR this time, runs the breast center at a major Baltimore hospital. now, at least both sides match. New technology is great: super glue for the 6 inch scar.

Complete mobility next day.

terryw -- not many people here today,, we usually have about 8-10

terryw -- I cant believe it this slow today

kdfl -- Terry, how are the surveys coming? Have you gotten any back yet. I have mine pretty well done and will send you what I have very soon.

terryw -- we have only gotten back about 12

terryw -- I thought people would be more interested,,

john-c. -- Will you send a copy of the results to all participants?

terryw -- yes we will

kdfl -- There were a lot of the questions that I couldn't answer.

terryw -- we are giving people more time since it is very long and with the events in the past 3 weeks people may have gotten side tracked

john-c. -- I gave a copy to my DR & he is interested: also he knows Fischbeck (spelling ?).

terryw -- that’s OK KDFL, we were sure that would happen

kdfl -- Good idea, John. I'll take a copy along to my Neurologist when I see her in February.

john-c. -- What kind of scooter, kdfl? And where are you from?

shack -- {welcome shack}

shack -- good morning all

john-c. -- Hi shack

kdfl -- John-c, I have a Pride 3 wheeler and I use it in Sun City Center, Florida. I have a hoist in the back of my van, which makes it easy to get it in and out.

john-c. -- Sounds like it does the job for you. I just got HC tags, which is a real help. I bought a used golf cart from an old friend: really helps getting around.

kdfl -- John-c, I feel guilty sometimes using my HC tag when I bring the scooter out of the car. I figure I should leave the space for someone who need it worse than I do.

terryw -- I feel that way sometimes also KDFL

john-c. -- I know what you mean. On good days I agree, but it's great on bad ones.

shack -- I use an Amigo scooter away from home and a walker in the house

terryw -- My power wheelchair sure saves my legs

shack -- I don't ever feel bad using my tag, people without tags use the spaces so much

john-c. -- Abused in Md. also. Lots of folks who only will be there for a minute: too bad it's your minute.

terryw -- good point shack

john-c. -- Cane for me: have not fallen in past 3 weeks: a new record!

terryw -- Hi Shack,, you new?

shack -- I was in about 5 weeks ago approx. and registered with you, Name is George Shackelford

shack -- been a while since I was in. been off line and just got back on. had DNA test done for Kennedy's but no results yet

terryw -- OK Shack, Please let us know the results

terryw -- Shack I mean

kdfl -- Shack, how long have you had the symptoms?

kdfl -- Good to have you with us, George.

shack -- was dxd with ALS in 87 and have had very slow progression

john-c. -- Shack: you & I must have had the DNA test same day. I'm still waiting also.

shack -- DNA test was on 9/12 and they said could take 4 wks, that will be next Wed.

john-c. -- Mine was 9/5 & they said 6-8 weeks.

kdfl -- Shack, about the same for me and I am still around also.

john-c. -- George, where are you from?

shack -- Shreveport, Louisiana

terryw -- Hello everyone I have just switched over to my voice recognition software it types what I say

terryw -- from here on out when I type in the room will be through the software that recognizes my voice

terryw -- it saved my fingers a lot of work

john-c. -- terry: Wow! what a help that must be.

terryw -- I will be covering this software in the upcoming chat

terryw -- is called IBM ViaVoice

terryw -- it works really well. It takes a little while to train it but it's worth it

john-c. -- How does it work when my foot is in my mouth?

terryw -- L O L

kdfl -- Terry, looks like that program is doing a good job for you. I have

heard mixed reviews for this type of software.

terryw -- I use the software my fingers don't work too well

shack -- Terry, I have voice recog software, but can't use it - voice too far gone it doesn't recognize me LOL

john-c. -- mega bucks??

john-c. -- what's lol?

terryw -- L O L means laugh out loud

terryw -- I had heard that in the past myself but I had to read a story to this for 30 minutes to train it and now it pretty much understands all the words I say

terryw -- the program only costs $69

john-c. -- thanks

terryw -- it's much easier than typing

shack -- I still have good use of hands and fingers so it works out good was a male steno for a few years

terryw -- that's great shack. You saying that your fingers don't go numb after a while of typing or working with small objects

shack -- no, numbness with hands is not a problem, though find hands are clumsier with small things

kdfl -- I may not work for me either as my wife is always telling me she can't understand me.

kdfl -- I mean "It".

john-c. -- I just lost the screen: I'll be back.

john-c. -- {goodbye john-c.}

terryw -- I tend to mumble also. Susanne says she can't understand me a lot of the time but I speak slowly and clearly with the voice program and it types everything I say pretty well I have not had to make any

corrections since I started this today

terryw -- it has gotten every word correct

john-c. -- {welcome john-c.}

terryw -- and I don't have to worry about spelling words wrong

shack -- When I tried to train my program, it looked like a foreign language

kdfl -- Terry, no wonder there haven't been as my mistakes during this chat. LOL

kdfl -- I mean "many"

terryw -- I was not using it when I started the chat I just enable it about 10 minutes ago

terryw -- I am fairly impressed with the way this program works for the cost. I think it has a lot to do with the quality of microphone you have and how much time you spend training it

john-c. -- how wonderful that the technology is helpful for you .

kdfl -- Terry, Have you used it during other chat sessions?

terryw -- this is the first chat I have tried the program seems to be working great

shack -- my Neuro Dr. said he has had only one KD patient before, some time ago

terryw -- most neurologists have not seen any Kennedy's patients ever

john-c. -- you guys should've seen the look on my DR’s face: he was like

he discovered the holy grail.

kdfl -- My Neurologist has 2 Kennedy patients right here in Sun City Center.

terryw -- the first time I went to UCLA to see the neurologists my doctor was surprised to see a Kennedy's patients. He called in a group of interns of about 15 of them it was like a big show and tell session I felt pretty weird I felt like I was the missing link

john-c. -- he's really a good guy: we've met for lunch and will again this week. Then regular app't: hopefully the DNA will be back then.

terryw -- you both need to let us know how the results come out

john-c. -- I also got the Show & Tell routine. Glad you're the link: I thought it might've been me!

kdfl -- I wasn't tested for Kennedy until my cousin told me about his results.

shack -- have you guys seen the article about the possible link between HIV treatment and ALS symptom diseases?

terryw -- know I have not

terryw -- there was my first mistake

john-c. -- no

terryw -- it's spelled no wrong

kdfl -- I haven't seen the article either.

john-c. -- and you told it to correct it: how does it know from no??

kdfl -- Terry, seems like it may sometimes operate like the spell checker.

terryw -- it figures out your sentence syntax and looks at the grammar

shack -- The article was in Yahoo news on 9/29

terryw -- I can't believe there's only three of us here today

shack -- http://daily news.yahoo.com/h/hsn/20010925/hl/hiv

terryw -- actually four of us

terryw -- I will take a look at that shack

john-c. -- kdfl: I’m going to move to either your area or San Diego when I become homeless: not really looking forward to the snow & ice this winter. I can't get up now when I fall.

kdfl -- John-c, I can't get up either and my hands don't work well when they get cold.

john-c. -- How many usually?

terryw -- we usually have seven to ten

terryw -- Shack, have you been to www.Kennedysdisease.org

shack -- yes, I have your site on my favorites list and look in from time

to time -

john-c. -- Terry: it's really great how you & others have pulled it

together. I thank you for all the effort. It's been a help to be able to

get info & "talk" to you.

shack -- so far have found chat room empty

terryw -- I am glad it's helping you all

kdfl -- I think there are just too many hours in the day to find someone in the "Chat Room" any time you log on.

shack -- we are having a spell of 'cool' weather right now and my knees are stiff

kdfl -- I can stand the hot weather a lot better than the cold.

shack -- kdfl, I agree with you, cold is hard on me

john-c. -- cold is a real problem.. I have a few pairs of my daughters' ballet leg warmers that help when sleeping.

john-c. -- my email is: This email address is being protected from spambots. You need JavaScript enabled to view it.. The chat room is always empty. Drop me a line & we can continue sometime. I work about 65 hrs/wk, so time is limited at times.

terryw -- {welcome terryw}

terryw -- sorry I got kicked out

shack -- yes, I know my hours are probably different, just wondered if there is a regular 'good time'

terryw -- I put a message in the other chat room to let me know when someone is there is says to send me an e-mail invitation and if I am on-line I will join them in chat

terryw -- it only takes the second to send an invitation and if I am on the computer will join you immediately

john-c. -- That worked fine as your email address was there.

terryw -- yes that is a problem if you don't know the others e-mail's

john-c. -- shack & kdfl: email addresses??

kdfl -- John-c, address is This email address is being protected from spambots. You need JavaScript enabled to view it.

shack -- This email address is being protected from spambots. You need JavaScript enabled to view it.

terryw -- John we don't give out people's e-mail addresses without their permission we do have a file we can send you with people's e-mail's who have given permission

terryw -- John send us an e-mail requesting the file and we will send it to you

john-c. -- I'll do it! This is 1st time & don't know rules/protocol. Sorry.

kdfl -- My email address is listed on the Web site.

shack -- my email isn't restricted except to marketers

terryw -- no problem John we were all new at one time

terryw -- the chat session will be ending fairly soon

terryw -- any last topics

terryw -- any suggestions for future topics

kdfl -- See you all in a couple weeks.

john-c. -- Thanks for putting up with me. Best of luck to us all! If you guys ever notice my warped sense of humor fading, will you shoot me?

john-c. -- By

shack -- sorry I got in late today, my AOL tried to sign me on as a new user with no account, had to reboot

terryw -- the warped sense of humor's are welcome

terryw -- by John

shack -- enjoyed being with you - see you next time

john-c. -- {goodbye john-c.}

shack -- {goodbye shack}

terryw -- guess we should say goodbye see you next time take care

kdfl -- Terry, are we seeing who can outwait who?

terryw -- you go first

kdfl -- OK

kdfl -- {goodbye kdfl}



End Chat