Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  10-16-2004

Topic:  Open Forum

Host: Murray Williams

 

Chat Participants:

murf
MICH
JohnM
denny
MikeG
Chuck
Coak


BEGIN CHAT

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murf entered the room.

You are in Kennedy's Disease Chat.

There are 1 people in the room.

MICH entered the room.

MICH: Good Morning Murf, how's the weather in Texas?

murf: Morning MICH

murf: Weather is fine today and you?

MICH: We're finally getting rain maybe by Monday, and cooler weather just got here.

murf: I had a crash last night and had to reload my computer

murf: Lost everything to a virus

MICH: Were you once saying your right hand and arm are weaker..or fall asleep...my strengtb seems to be going faster on that side?

murf: sometimes my hands and below my elbows fall asleep at night

murf: I think its circulation in the night

MICH: I'm ignorant when it comes to computers...using my daughters...and here screen is getting so dark that it's best to use it at night so you can more easily find the mouse and other things.

murf: This was the backdoor virus that my antivirus could not detect

murf: It made the computer so busy I couldn't do anything it was working so much

murf: I'm slowly loading all my programs back

murf: Will you be going to the conference?

MICH: As I said I really have to strain my eyes to read the screen...so glad to find out it wasn't you that was in a crash...and you didn't get a virus...did you get a flu shot?

murf: Not yet, I can't find any place to get one yet

murf: Did you get one?

murf: You should be able to brighten the screen on your montor settings

MICH: I would have done just about anything to finally get to the conference and meet others with KD but.... it woul;d have meant using plastic money that I don't have... and driving there....the thing that really stopped me was my daughter and grandkids paid for us to go to Arizona as my wife's birthday present that same weekend but maybe I'll get to meet Ceric there?

MikeG entered the room.

MikeG: Greetings from Sunny & Cool Florida

murf: Good morning Mike how did you far the storms?

denny entered the room.

MikeG: Not too bad... we had some downed limbs but not roof damage like some people who live close to me.

murf: Maybe we can look at some place central for the next conference

MikeG: I happened to be in Texas for the last one - Jeanne.

MikeG: That would be great!

MikeG: Who's Houston?

MikeG: How's

murf: We have been very lucky here this year

MICH: Phoenix Arizona would be a great place to have it?

MikeG: We had a cool snap last night - temps in the 60s

murf: Sunny today, looks like its going to be a nice day

MICH: Has anyone gotten a flu shot yet?

MikeG: Nope - they don't have any available

murf: MICH - we usually follow the neurologests a few days ahead so we don't have to pay for flights

MikeG: Even the hospital that I volunteer at can't get any

murf: The MDA are sending out a notice where we can get them but I haven't got mine yet.

Chuck entered the room.

murf: If you're on their mailing list they will tell you soon or you could call them

murf: It would be a good idea i think for us to get one. I'm going to try

murf: Anyone going to San Diego this year?

MikeG: I've never seen such a debacle like we are having with the shots. One week you hear that Publix has about 200 available and people start showing up 3 or 4 hours early to get in line. The next week no one has any at all.

murf: Apparently the main supplier of the flu shot has been shut down for health reasons

MikeG: Not me Murray, can't afford it on SS disability pay...

MikeG: Would love to go though.

MICH: My boss...previous boss...had Charlottes Tooth(sp?) MD and didn't get one...ended up with pnemonia....and was no longer able to work.... so for many it's a good idea to get a flu shot.

MikeG: I agree - the flu shot is HIGHLY recommended by my neurologist.

JohnM entered the room.

murf: MDA should be able to help us here

murf: Morning John

MikeG: Both of my uncles had KD and they both died of pneumonia.

MikeG: Hey John

murf: I think that's the way most fo us can expect to go. Complications

Coak entered the room.

MikeG: Hey John C.

Coak: Hey Florida guys!

Coak: Hi all!

MikeG: Got cool last night here

JohnM: Morning all.

murf: Coak - Is that you John?

Chuck: 0Hi John.

Coak: John - Thanks for the smiles---Yep, Murray, it's me

Coak: Hi Chuck & WVa

murf: How about the joke of the day, we need one

JohnM: John, I try not to overload you with jokes.

Coak: I really appreciate that, John.

Coak: John M. will have the joke of the day today.

murf: Looking forward to San Diego

Coak: Denny & MICH -- do we know each other?

JohnM: I have deleted all the cute ones.

murf: John - Lost everything to a virus last night. Reloading the computer today

Coak: My real purpose in going to San Diego is to pick out the corner I will live on when I'm homeless as I will not stay here in MD with the snow & ice.

MICH: John C....it's been a while but I've been joining the chats off and on when I can since last Fall... about a year???

denny: Don't believe so.

Coak: MICH -- going to SD?

Coak: Denny -- to SD?

murf: John - there are lots of underpasses here in Houston, you'll have lots of company like me.

denny: I can't attend this year.

MikeG: John C - are you coming down to Orlando again any time soon?

Coak: Thanks Murf. -- I'm coming to Hou on 11/24 as a stop over (1 hour) on a flight to Toluca, Mex for a wedding.

murf: We'll take lots of pictures and put everything on the website for those who can't make it.

MICH: Can't afford it...was temped to use plastic money...but instead my son-in-law paid for me to come to AZ to celebrated my wifes belated birthday...hope to meet KDer CERIC there?

Coak: Denny-too bnad as the friendships that grow from the meetings are one of the better parts of KDA.

murf: Not enough time to get together

Coak: Fingrers donnt worrk wel

murf: I hear that John!

denny: I will consider it next year.

Coak: Mike - not at this time. I will be in Chicago the week after SD & then in Mex over Thanksgiving.

murf: Unfortunatly we'll not have one next year. We will go biannually form this year

JohnM: John, I usually hit the enter key before I'm sure it's what I want to send.

murf: Just too much to put these together

Coak: Denny & MICH- I (we all) look forward to meeting you soon, either here or there.

MikeG: John M - did you get a flu shot at the Business Expo Thurs? I see where Don & Judy did... I wish I had known the Hospital wouldn't be giving them this year to volunteers OR EMPLOYEES... I would have signed up - they were not very busy at 9am there.

JohnM: Mike, that is what I found out this morning. No, I didn't get my flu shot either.

MikeG: John C - well let us know when you're there again - this time it's our turn to meet over in Orlando.

Coak: You're on, Mike

MikeG: //10

murf: I have looked around for the flu shot and the only thing I found was the MDA are sending a notice out to where we can go but I haven't received the notice yet

JohnM: John, I'm with Mike on that one.

Coak: 10-4....

MikeG: John M - I guess we're out of luck... do you think Petrella will have any at the MDA clinic?

Coak: I'm outta here in 5 to see 2 grandkids play (lol) soccer. The coach told one of them last week to stand "there" and that's exactly what he did -- stood there.

JohnM: Mike, I don't know but we will be seeing her next Thrusday.

Coak: Chuck, How are you guys? you should tell the folks on the chat about the Genetic conference you attended.

murf: John See you Tuesday night

MikeG: I don't see her until the 18th of November.

JohnM: Mike, I thought you had a different neuologist.

Coak: OK Murf......Where is my offer of employment so we can go fishing during the interview??

murf: I'm working on it

Coak: Ok guys -- Enjoy life! Talk with you soon.

Coak: Bye

murf: Bye John take care

Coak has left the room.

denny: Bye.

MikeG: I see Dr Stein for my 'in network' doctor that Aetna pays for.

JohnM: Mike, Oh.

TerryW entered the room.

murf: I look forward to these conferences every year. I don't know what I'm going to do next year

TerryW: Hello

murf: Hi Terry

MikeG: but Petrella still is required for MDA clinic.

TerryW: I just got back from geting my Flu shot

MikeG: She's the one that can recommend the scooter.

murf: We've been talking about that. Where did you get yours?

MikeG: Good for you Terry - you're lucky

JohnM: Hi Terry, welcome aboard. I didn't get my Flu shot. Lines were toooooooo long.

TerryW: Kaiser, shots started at 8am I got in line at 6:30

TerryW: the lines are about 300 people long

MikeG: how do you like Kaiser?

TerryW: I was #5

TerryW: they are good

MikeG: WOW

Chuck: It was a very good thing for all concerned. We also felt Kennedy's got some very good publicity. Dr. Charlotte Sumner spoke the first day and Dr. Fishbeck was there the second day. He even showed some of those "BEAUTIFUL" pictures of me when he spoke on the Kennedy's part of his lecture. Those pictures was because it was so close to Halloween!!!!!!! There was 5 of us on the panel with all having different neurological diseases. All were very interesting. The panel was headed by MICHelle Fox from UCLA. Of course, I was the "old" man of the group.

TerryW: no problems

TerryW: murf will you save todays transcript at the end

murf: Chuck - can you write something up to put out on the website?

murf: No problem Terry

TerryW: thanks

MikeG: Wish I had something better than Aetna - it seems double ever 2 years - guess I should be glad that Paula is working and can get it...

JohnM: Our CIGNA insurance keeps going up also. I think they all are.

TerryW: so how is everyone

murf: Terry - I'm lucky, at 9pm last night I had no OS. Got a bad virus and spent all night loading windows and getting things working again

MikeG: Balance is getting real bad for me - but at least I'm still ambulatory...

JohnM: I'm not doing too bad. I did go down again the other day and am noticing quite a bit more weakness.

murf: Mike are you in a chair yet?

MikeG: Murray, what OS u using?

murf: XP

MikeG: Not yet - but I have a Jet3 when the time comes.

murf: Sounds fast

TerryW: I fell 2 times the past 2 days. One of them was when I was walking the horse. I almost got stomped on. Missed me by inches

MikeG: Wow, I thought XP was to protected...

TerryW: he got scared when I fell

MICH: Speaking of insurance... my wife's United Healthcare doesn't even cover going to the ALS/MND clinic...or most of the good neurologist... I guess they expect me to go to an MS doctor instead??? but thanks to MDA I go to the clinic anyway.

murf: Be careful Terry

TerryW: MDA clinics are free

TerryW: even if you have no ins

MikeG: MICH, - exactly the same with Aetna.

murf: No vaccine at the MDA clinic in Houston

MikeG: that's bad - //8

Chuck: I really don't know what to say since the entire two days was really for Genetic Counselors. There were 400 + counselors in attendance and so much of the information was way over the ordinary person's head (or at least mine). They discussed methods used and different way of diagnosing many neurological diseases. Felt lucky that Kennedy's was one that was discusses and that I could bring to their attention.

TerryW: Kaiser charged nothing for the flu shot. I was suprised

JohnM: I'm afraid that the MDA clinic in Sarasota doesn't have any either.

murf: They are going to tell us where to go

MikeG: Really?!!!

MikeG: Have you talked to anyone there?

murf: Call your MDA clinic and they will tell you where you can get one.

JohnM: Not yet.

MICH: A few weeks ago I feel on the side of the head in my driveway and really sprained the arm and got a good goose egg to the right of my eye...several months before that it was stitches by my left eye...doctors recommending a football helmet.

MikeG: I hear MDA is mailing everyone a list of locations that have the shots available - maybewe have to go over to St. Pete...

murf: Yes - if you're on their mailing list

TerryW: Boy MICH,,, you have to be careful.

murf: No kidding

MikeG: We all do!

JohnM: It doesn't take much of a lapse in attentention for it to happen though.

TerryW: Everyones so quiet today

MikeG: Terry, my neurologist didn't sign the waver for me to ride again this year... said it was too dangerous for me.

MICH: The practice I got falling on those icy lakes in MICHigan as a kid is probably why I'm still half way in one piece.

TerryW: to ride?

MikeG: MICH & Terry - are you guys wearing AFOs yet?

TerryW: not me

murf: AOF?

MikeG: Yeah, he said that with the trot work that I'm doing it could be pretty bad if I fell off...

MikeG: Sorry - AFOs

JohnM: I'm wearing them and when I take them off I don't even try to walk any more.

murf: What is AOFs?

MikeG: I'm going to try my GP next week to see if he will ok it...

TerryW: I am afraid of falling from the horse. My legs are weak and hard to squeeze on the horse

MikeG: Ankle to foot orthodic.

MICH: I have an AFO but don't use it yet....it's like wearing a ice goaly outfit...nearly cuts off circulation to legs and really slows me down

murf: Don't wear them yet

JohnM: MICH, nothing I do anymore is fast.

MikeG: That's what my neurologist is afraid of... I only had that feeling one time when I was doing a lot of posting work.

TerryW: I am gonna sign off now. Talk with ya all after the conference.

MikeG: I find the AFO helps me in long walks (with cane) that I might not be able to make without falling.

TerryW: bye all

murf: What do we have planned for Tuesday night Terry?

MikeG: bye Terry

TerryW: Tuesday

TerryW: ?

TerryW: we arrive Wed

murf: At the conference, I get in Tuesday night

murf: free day for me cool

TerryW: yep

TerryW: bye

MikeG: Have fun at the conference.

TerryW has left the room.

denny has left the room.

murf: Might have to go to Mexico

murf: Bye terry & Denny take care

MikeG: I need to go too - got a hot project that I'm working on. Bye

murf: see you Mike

MikeG: Later...

Chuck has left the room.

JohnM: Yes, all have a nice time at the Conference. Sorry I won't be there either.

murf: Bye Chuck

murf: John - always a good time

JohnM: I'll be leaving also. Talk next time.

MikeG has left the room.

JohnM has left the room.

murf: Bye John Take care

murf: MICH was it something we said?

murf: //0

MICH: Well I guess we'll be back again on Halloween weekend, talk to you later Murf

murf: I'll save the chat Bye MICH take care

END CHAT