Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Kennedy's Disease can be a lonely existence in many ways, but the KDA makes me feel I'm not alone, thank you."

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Kennedy's Disease Chat Transcript  05-17-2008

Topic:  Open Forum/New Chat Room

Host: Terry Waite


TerryW  Hello Dart

Dart!  G'morning Terry - we hope that this is a good one for you!

TerryW  I hope so to, I will be right back

TerryW  I am back

TerryW  Hi Murf

murf  hey

murf  walking TJ through

TerryW  hi TJ

TerryW  Hey Ron

Ron  Hi guys, Hoiw are you all?

TerryW  My PC got a real nasty Hijacker Virus on Friday night

TRAILBLAZER  Hello everyone and good morning - tj

murf  Hey Ron

TerryW  Hoe you feeling TJ?

TerryW  how

TRAILBLAZER  Tired-- leg hurts

TerryW  I hope that after they take care of this you will beel better

Ron  Thanks again Terry for helping me get on the new chat.

TerryW  Hi ALex

murf  Hi Alex

TerryW  no prob

TRAILBLAZER  Got to go back wednesday to the hospitial toclear the blockage in my right coronary artery

Ron  Hi Murf. How goes it?

Alexandre  Hallo Terry how are you today?

Alexandre  Hi Murf!

murf  It goes. I blew the powere box in the house the other day and that just cost K

Ron  TJ glad to hear that yoiu are doing pretty good.


Craig_H  howdy

TRAILBLAZER Don't know how long I'll be on the chat, I'm pretty wore out

murf  My case is with the Halliburton doctors and attorneys to decide if I need to go on disability

Ron  What happened to your electrical box? Did you have a lightening strike or what?

murf  TJ we got you on any way and I'll be up after the chat


TerryW  HiHi Losh,

TerryW  craig

Craig_H  hi terry

loshimo   Hello everyone. This is Luis Shimomura from San Francisco

murf  It may haqve had something to do with the storm but I think it had more to do with a bad pool electrican


Ron  Hi Craig. Glad you could make it today.

TerryW  If you all look on the right by the user name you will see a little key that shows when someone is typing

murf  Hey Luis you're new

Craig_H  thanks ron ............ not been on in several months

TerryW  seee

murf  cool

TRAILBLAZER I need a cigarrette

TerryW  this way you can telll if everyone is just sitting on their hands

murf  pardon?!

Ron  Murf--I think your pool electrician should pay for the new panel.

loshimo   Hi Murf... Actually I'm not too new.

TerryW  losh is an old timer here

murf  never happen

Alexandre  Good morning, Luis Shimomura how are you today?

murf  loshimo glad you could make it

murf  how do you guys like this new chat?

loshimo   Alexandre, my friend... I'm doing fine. How about yourself?

TRAILBLAZER  Anything new about KD

Ron  Hey Terry--I like the new chat room. Hope it keeps us on the chat without booting us off all the time.

murf  TRAILBLAZER didn't you get your cure mailed to you?

TerryW  I got a terrible Browser hijacker virus on my PC that my software did not protect me from. I tried differrent software packages to remove it yesterday but they could not do the job so I put my old PC Tech talents to work and I trmoved it manually by hand

murf  o sorry

Craig_H  murf, seems faster, miss the having info like "location" with the user name

TerryW  It was a pain but I trackked down the files one by one on my PC and l killed them

TerryW  I ran the scan again and I am clean

Ron  Seems like a long process terry.

TerryW  luckily I know how they work

murf  how did it get in?

TerryW  Susanne went to watch a video on that big texas sinkhole

TerryW  when she clicked on the video it downloaded

Craig_H  trailblazer. I wish I knew anything new about KD

murf  Dam Texans }

TerryW  yep

Dart!  Smart guy you must be, Terrry! Congratulations on your success!

murf  did you report it to Symantic or Macfee

Ron  The Texas sink hole is from tking all the oil out of the ground. LOL What do you think TJ and Murf.

TerryW  yes

TRAILBLAZER  Hey Craig - I had a heart attack last week and when they went to operate on me because of my KD they did not give me a bunch of antibiotics and before the procedure was over I could feel the pain.

murf  or drilling into an old mine shaft

Craig_H  oh my gosh Trail

Craig_H  we not supposed to have anti-biotics?

TRAILBLAZER  Not a lot I think

Craig_H  and what does anti-biotics have to do with pain ?

Ron  TJ hope you are doing well after major surgery and a heart attack. Our prayers are with you.

TRAILBLAZER At least thats what my Cardiologist said

murf  I ask them to knock me out with Deprivon

Craig_H  you doing ok now trailblazer?

murf  I think thats what its called

TRAILBLAZER Thanks Ron - gotta go back and have a stint put in my right coronary this wednesday

murf  It good stuff

Craig_H  I have my last NIH dutasteride visit in days

TRAILBLAZER yes Craig other than trying to get around - very sore - can't drive for weeks

murf  You need to ask the doc what stint or who is the manufacturer of the stint ... i may want stock in that company

Ron  Me too Craig. I will be going to NIH on June and .

murf  I go June th


Craig_H  May - for me , don't think they've changed it

Ron  TJ you never could drive that good anyway. LOL

TRAILBLAZER Does anyone really feel different

Ron  Not me. I must be on the placebo.

Craig_H  I feel my best when my blood sugar is under control

Ron  Thats great. Me with type diabetes and they give me a sugar pill. LOL

Craig_H  Ron, do you feel weaker when sugar level is high?

Gary_KC  Good morning! Gary Uchiyama joinde from KC. It is nice day.

murf  TJ was tied and had to go lie down

Ron  I feel alot weaker this past year. Of course I am a year older too.

TerryW  Hi GAry

murf  Me too Ron

murf  still falling and for the first time twice out of my chair

TerryW  Did anyone have problems getting to the KDA site this morning?

Craig_H  Ron, I can almost always tell if my sugar is high depending on how my legs feel, before puncturing my finger

TerryW  or chat

murf  TJ did be he had the wrong address in his favorates

Craig_H  Terry, I couldn't. I had to go to email link to get into room

TerryW  TJmm shame on you

Ron  Sorry to hear that Murf. Falling while walking is one thing, but falling out of your chair, that is terrible.

TerryW  that is strange

Craig_H  KDA site wasn't loading

TerryW  I got to it fine

TerryW  some people have reported not being able to get to it

TerryW  and some did not have any issues

TerryW  wierd

Craig_H  maybe y'all don't like some of us? ;)

murf  Ron - @ full throttle running the dog the right wheel caught a curb and turned deg

TerryW  Don is trying to get into chat and just e-mailed me saying he could not get to it

TerryW  I sent him the direct link

murf  Chair stopped I didn't

Dart!  Yes, I, too, had a problem - the site did not want to accept my 'username', but it is OK now.

murf  (

Ron  Murf....Know your limitations. That is the book we live by.

murf  no broken bones though

murf  First time in years of being in a chair I flipped it

murf  rolled my chair lol
Ron  I guess we can now call you FLIPPER. LOL

murf  LOL

murf  LOL = lol
TerryW  that should be your chat ID murf

Ron  Murf--is TJ really doing good?

TerryW  where did TJ go?

murf  ya i think so I'm going up there after the chat

murf  he was tired and logged off

TerryW  ok

loshimo   Has anyone experienced swollen feet recently? Can this be KD related?

TerryW  not me my feet are all bony

TerryW  no more muscle

murf  Do you know that if you type el -o -el you get lol
Ron  The balls of my feet get sore sometimes. You all know what it is like to have sore balls. LOL

TerryW  D

TerryW  o
loshimo   lol
Ron  Has anyone talked to John Coakley lately?

murf  yes

murf  he's doing ok

Ron  How is he?

murf  beet ya

Ron  LOL

TerryW  Do you all like the who is in chat box that shows whos in chat?

TerryW  kind of neat

TerryW  SOmetimes furing the day I log into chat and wait to see if someone sees me and joins, It's sort of like fishing for KDA members

TerryW  during

Ron  Do we really need the time with every data entry?

TerryW  data entry?

murf  Ron you can turn that off yourself

TerryW  youcan turn off the time stamp

TerryW  on the tools bar below

TerryW  hover over the tool

Ron  Thanks.

murf  Thanks Terry for finding this site. I like it much better than the Bummer chat. It was a real bummer man

Ron  See what happens when some of us are computer illiterate.

TerryW  I think this will work better

murf  The computer is only as smart as the loose nut behind the wheel ... sort of

TerryW  Its supposed to be here today

Ron  I talked to Angela and she said you'll had a great chat on the rd of may. It was my birthday and I went away.

murf  we had a chance to test drive it too so we are cheating

Ron  LOL Murf.

murf  Happy birthday

TerryW  what happend to Alex

Ron  Thanks

murf  lost connection?

TerryW  dunno

loshimo   I was privately chatting with him and he said he was going back to the public chat and that's the last I saw of him.

murf  We need y'all to report any problems you encounter so we can evaluate this site and make your chats a better experience

TerryW  sometimes dial up from other countries have issues with the connections

Ron  Nice job Terry and Murf.

TerryW  I will have to e-mail him to see

TerryW  ty

murf  All Terry

Craig_H  y'all take care

murf  cya Craid

murf  Craig

Ron  Thanks Terry. Good job. Nicr not haveing Bummer.

murf  LOL

Ron  So long Craig. Stay healthy till next we chat.

Gary_KC  This is better chat because we can change font size now. It is easy to read for me.

murf  I like that too

murf  There is a lot you can do here so go exploring guys

Dart!  That must represent a lot of searching to find and choose a better service provider.

murf  Terry found a few

TerryW  yes

murf  we only tested two before finding this one

Ron  How is Susanne doing/ Have not heard from her in a while.

murf  I like it and I think we signed up for one year ... is that correct Terry?

TerryW  yes

murf  So next year April we'll sign on again or go looking again

Ron  BOD will be on the of May right? I will not be able to make it on that date.

TerryW  got ya ron

TerryW  yes

murf  We'll miss you

Ron  Hope so--especially if you are trying to hit me. LOL

murf  I would never hit a man while he's down

Ron  I should save some of this corn.

loshimo   Just got a mail order box last night which included a long handle shampoo brush. I've been having more and more trouble raising my arms above my head lately. Hopefully this will help keep my head clean. Any one experienced this?

murf  LOL

TerryW  I just put in a shower bench and another grab bar

TerryW  Losh, I can only hold them up there for a minute or so

Gary_KC  loshimo , I have the same problem, too.

Ron  I always shower and wish I had more of a reach sometimes.

murf  I just had to install solid grab bars in my shower. the stick on ones were not cutting it any more

loshimo   I also got a grab bar with this order. This unit has a little set of windows that will change from green to red if the unit loses suction and need to be reinstalled.

TerryW  Soon the pressure from the showerhead is gonn knock me off balance LOL

murf  I'm looking at Premier Bathrooms showers

TerryW  that is neat Losh

murf  You can walk in site down and have a bath or shower

Ron  Does the premier shower include a nurse?

TerryW  the window

murf  I wish

TerryW  the nurse from one flew over the Coo koos nest

murf  They are self contained units ... has anyone seen them?

TerryW  yes

murf  what do you think?

TerryW  they are nice

loshimo   Are these the units that have a side door and you can use as a tub?

Ron  Hey guys. I must go for now so--stay healthy till next we chat.

murf  Are they expensive?

murf  cya Ron stay on your feet

murf  loshimo yes

TerryW  how are you doing Gary?

TerryW  you ok?

loshimo   Do they require a lot of bathroom tearing to install?

Gary_KC  TerryW. I am fine thank you.

murf  I don't think so but doubt we could do it our selves

TerryW  Thanks for your continued support of the KDA Gary

murf  I will need to rip out a shower and a tub to install one if I get one

murf  I not russing out to buy one

Gary_KC  My right arm is weaker than left arm. i managed to take shower using the left arm.

TerryW  Without the members support it would be hard on the KDA. every littl bit helps

murf  rushing

murf  with out members we wouldn't be!!
murf  Thanks everyone

TerryW  correct

TerryW  rhis week I goi back for my CAT scan to see if the liquid meds disolved my kidney stones

TerryW  its been months on the meds

TerryW  times a day

TerryW  I hope so

murf  good luck bud

murf  I never want stones

TerryW  no you don't

Dart!  Terry, that doesn't sound like much fun!

TerryW  they are like getting shot

murf  what do they think caused them?

TerryW  dunno, many things

TerryW  not driking enough fluids

TerryW  in my case low urine PH

TerryW  Very acidic

loshimo   OK gang... Gotta go... Stay healthy and vertical!!!

murf  I try to drink lots of water so hopefully that helps

TerryW  see ya losh

murf  loshimo cya next time

Logout  loshimo     
TerryW  my PH should be between . - . but it is like .

murf  wow that is low

TerryW  I don't know why

TerryW  the meds I am taking raise the PH

TerryW  its a liquid I drink


murf  we know you were not in CA in the 's

TerryW  yes i was

TerryW  a kid

murf  Too young for Acid?

murf  LOL

TerryW  I LOL

Dart!  Have you had your drinking water tested, Terry?

TerryW  I am gonna go, talk to you all next time

TerryW  my water is great last time we had it tested

TerryW  direct from our well

murf  ok me too I got to go see TJ

TerryW  ft straight down in granite

TerryW  Goodbye all