Kennedy's Disease Association

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"The KDA is an excellent group of caring and dedicated members that are always there if more support and hope is needed."

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Kennedy's Disease Chat Transcript  01-03-2009

Topic:  Open Forum

Host: Terry Waite


Terryw: Hello
Terryw: How are you today
UTE: Terry, I can't believe it...I made it in after only a half dozen tries
Terryw: Are you the one on the old PC from last chat? I can't remeber
UTE: How are you doing today?
Terryw: doing OK, That reminds me, I have to take my meds, be right back
UTE: Yes the ten year old PC but this time I didn't wait for each step to get done...just went on to next steps
UTE: Good Morning Stan, how's the weather?
Stan: Morning. 17 degrees, partly cloudy
UTE: I can't remember... are you in Mich?
Stan: Yes
UTE: How's Pooh and Stan?
Stan: I'm cold, but otherwise ok
poohsdaddy: Good Morning -- Happy New Year 2009 to all!!!!!!!!!!!!!!!!
Terryw: I am back
UTE: Happy New Year to you guys!
Terryw: Happy new year
Terryw: so what is new
Stan: It's a new year, I'll hold off on the happy part until I have more data for evaluation
poohsdaddy: I had a fall on Christmas Eve and bad stumble on New Year's Day, but doing okay.
UTE: Terry, my trick to getting into the chat was not to wait for the steps to get done
Terryw: i am glad you are ok
Terryw: Interesting UTE
Terryw: I am going to be headed into town this morning so I probably won't be here for the entire chat
poohsdaddy: The weather is cold and the forecast has 4-letter words for the week ahead.
Terryw: I hear that
Stan: Same here
UTE: Pooh, I can relate... almost fell down when my son-in-law was working on making my dig tv converter box work??? luckly instead of my falling into the tv, I fell on him
Terryw: did anyone stay up until midnight on new years eve
Terryw: I can't amke it that late at all
Terryw: make
Terryw: I made it until 9PM west coast
Stan: My wife and I stayed up until 2 am
poohsdaddy: I stumbled into a group of women with my wife right there -- They caught me and kept me from falling down.
Terryw: Pooh so you fall for women easily?
UTE: My wife was on about day three of trying to make the converter box work...fell asleepbefore the new year got here
Terryw: LOL
poohsdaddy: YES !!!!
Gary_KC: Good morning and a happy new year. This is Gary Uchiyama in KC.
Michael17860: Hi All
Terryw: hi gary, Michael
Terryw: I have a space heater right next to me keeping me warm so I can type
Gary_KC: Hi Terry.
Terryw: otherwise my fingers don't work
Stan: I have my portable heater near me, my wife.
Terryw: :)
poohsdaddy: Have the December chats been posted yet? I missed out on the last on.
Terryw: I am behind on one of them I think the last one
Terryw: hi ron
poohsdaddy: I like the idea od a heater too since the computer is in our coldest room.
Terryw: Hi Don
fl-don: gm all
UTE: I've found winter and the cold slows me down so much that for the 1st time I use paratransit(flextran) to get to energy to load the powerchair with bruno lift into car
fl-don: 80 here today
Terryw: don, bragger LOL
Stan: The cold slows me down too.
fl-don: :p :p :p
poohsdaddy: Don, can you send some of that to the rest of us ??
fl-don: its on the way
poohsdaddy: Thanks !!!!
Terryw: DOn gets the 80's to make up for the hurricanes
Stan: We'll get it in May, right?
fl-don: yeppers
fl-don: wqhere is next years conference?
fl-don: where
Terryw: Chicago I think,
Terryw: depends on funds this year though
fl-don: lots of people took a hit in the stock market in 2008
poohsdaddy: That sounds right. Do we have a tentaive date or location ?
Ron: Sorry guys--i got bumped off the chat.
Terryw: yes, and at the last conference many stayed at other hotels which hurt the KDA and made the cost to the KDA higher
Terryw: Our costs are lower based on hotel room attendance
poohsdaddy: I would have liked to be there too, but had been to NIH in October.
Terryw: It's going to be a tough year
Terryw: so many people have lost jobs and companies going under
Terryw: terrible
fl-don: normal recession
Dart!: Greetings All--from cold Canada!
Terryw: Depression
Terryw: :(
Terryw: borderline
fl-don: naw, depression has 25% unemployment, recession has 10%
Terryw: hi Joe
Terryw: what is the US at right now % wise
UTE: Joe, how's the weather in NC
fl-don: 6%
Terryw: I thought more, hmmm
fl-don: but should go to 9%
poohsdaddy: I am in the process of Re-Assignment or Disability Retirement. A lot of paperwork to go through and complete.
joek: HI from Greensboro,NC
fl-don: hi joe
fl-don: good luck to the panthers, good team
Ron: Having a hard time staying connected.
fl-don: r u using aol?
joek: The the weather sunny about 38 degrees
Terryw: I say Goooooo Racoons
Ron: No. comcast.
fl-don: try using ms explorer
Ron: Using safari.
fl-don: never heard of it
Terryw: t
UTE: I say the UTEs are the only undefeated team!!!
Terryw: Kidding Don, I am not big into sports as you can tel D
Ron: Penn State took a beating at the rose bowl.
Terryw: :
Terryw: :
Terryw: :D
fl-don: i played football in hs and for the Marines
Terryw: Joe sit and stay a while
Ron: We had a 3.5 quake here in southern penna.
Michael17860: Penn state needs to get rid off jo-pa
fl-don: quaker state
Terryw: that is a small one ron
Ron: Yea, but were not used to quakes.
Ron: LOL
Terryw: but enough to jolt you if you are not used to it
Ron: Terry--have you talked with Murf?
Terryw: not in a few weeks, he has been really swamped with probs at work I think
Ron: Rignbt
poohsdaddy: Has anyone else had more pain and weakness since the colder weather ?
Terryw: Hi Mike
Ron: Right
Terryw: YES YES YES Pooh
Ron: Damn fingers.
Stan: All the time.
Terryw: I hate it
MikeG: hi everyone - sorry I'm late... neighbor came over for grapefruit
Ron: Alot of weakness.
Gary_KC: Yes, poo.
Terryw: I can hardly put a log in the fireplace 1/4 log I mean
poohsdaddy: Mike; are you the one that was going to see Pauline last month?
Stan: I think I'm getting weaker every day. Nothing helps.
MikeG: yes
Terryw: it has become dangerous, when I get on my knees and use both hands to put one in I almost go face first into the fireplace
Terryw: I need to hav esusanne do it more now
dean: Good Morning everyone from Phila sunny high of 40
Terryw: same here dean
Ron: I have been going to a therapist for water therapy. seems to be helping.
UTE: Dean, do you live by Chestnut Hills?
dean: no right out side of Phila airport
fl-don: i have been working out in an exercise pool for many years. no stress on joints
poohsdaddy: Stan; have you tried basic exercises? I go to PT almost daily; and it seems to help me get moving or at least maintain my strength.
Ron: I don't see how you do all you do with the horses and other animals there on your pondersoa.
fl-don: hoss waite
Terryw: It is very hard
fl-don: :) :)
Ron: lol
Terryw: I usually just let the horses in and out
Terryw: I ride my Rhino down to the stables
Stan: The exercises don't seem to work. I am losing muscle mass and strength almost daily. Weight too. I just do what I can. Maybe I expect too much. I'm the unreasonable man
Terryw: Yamaha Rhino that is
Ron: Getting back up after falling--what a task.
Terryw: Ron , my dogs ar big enough now that when I fall I use their back for support to get back up
Ron: Great
UTE: Terry, what kind ofdogs do you have?
Terryw: Big ones LOL
Terryw: Half Great Perenees & 1/2 lab with a spot of Pit I think
Terryw: they have wide chests
dean: Has anyone heard from NIH?
Terryw: they are about 135 lbs each
Ron: NO
poohsdaddy: Ron, Ditto. It took me a long time to get from whe I fell and into the house on Christmas Eve crawling through ths snow.
Terryw: I am goint o have to go. Mike will take over for me. take care everyone
fl-don: bye t
Ron: Pooh--what a challenge.
UTE: Bye Terry
MikeG: cya Terry
Stan: bye Terry
Ron: So long Terrry--stay healthy.
MikeG: Ron, have you tried calling Angela?
Gary_KC: bye terry
poohsdaddy: Angela will be back to her office on Monday. I got the automatic note when I tried to e-mail her this week.
Ron: Not lately.
MikeG: sure will be interesting to see who was on the real stuff...
dean: when will you heard about that mike?
fl-don: heading to a funeral, cyall later
MikeG: they said that everyone on the trial would hear by Feb. --- I think.
Ron: So long Don.
poohsdaddy: Did anyone hear from Kelly? about his brother who died a while ago?
dean: How are we doing up there in Lancaster Ron?
poohsdaddy: The last time I heard from NIH, they were considering 2 or 3 new medications and a study of the effects/benefit of PT>
Ron: Good--still losing weight and muscle mass.
dean: I was up there around Christmas time. Had lunch at the Hershey Hotel.
Ron: I eat alot of meals and usually have chocolate shakes later in the evening.
Michael17860: Does any one know what the medications will be ?
UTE: Stan, Ron, ... I've always wondered as I go thru stages of weakness whether cholesterol medicine makes me even you take such meds?
Ron: Not sure Mike.
Ron: Ute--no cholesterol meds for me.
Michael17860: Dean do you go to the Hershey Medical cernter?
Gary_KC: UTE, what cholesterol drug do you take?
Michael17860: center
Stan: I have been on meds for that. Yes, I felt it had an adverse effect. My GP agreed. I quit taking it and focus on diet to reduce cholesterol
dean: no just visting friend up there
MikeG: In case you didn't hear... we lost another KD guy here in FL last month. Rick Hamblin, Jerry Hamblin's brother.
Ron: I volunterred to fo to Hershey med center as a guinea pig....they wern't interested.
MikeG: he was from Punta Gorda
UTE: Tricor and Welchol
Michael17860: What kind of study were they doing at Hershey?
Ron: Rick was a nice guy.
MikeG: yes he was
poohsdaddy: Do we know what type of research will be done in Philadelphia with the grant from KDA ?
MikeG: UTE - Dr just put me on Zocor
Ron: I just volunteered to let them use me for Kennedy's study.
Michael17860: That is where I go to see my Dr. at Hershey
MikeG: no side effects at all on that... unlike norvasc.
poohsdaddy: I'm also willing to try other meds as they become available.
MikeG: ME2
MikeG: like J9!!!
Gary_KC: UTE, I was taking Tricor and my friend suggested me to change Zocor too.
dean: What is out there for KD?
MikeG: nothing yet
Ron: Well guys--I must go for now--stay healthy till next we chat.
MikeG: cya Ron.
Ron: So long.
dean: see you late ron
dean: I must go guys talk to you later
Stan: I never liked taking drugs of any kind. I wouldn't even take the pain meds prescribed when I got my pacer. If they come out with something for KD, then ok.
MikeG: they know what causes KD and they can cure it in mice but nothing is FDA approved yet for humans.
MikeG: cya Dean
Michael17860: Mike why dont the researcher consentrate on A-J9?
Michael17860: concentrate
joek: Carolina Hospital wonderful assiatance for KD people. They have a big group of ALS paitions that go down fast.
poohsdaddy: Are there defined levels for KD or some comparative series (like the stages for other illnessesd)?
MikeG: Androscience is not the drug manufacturer... just the research company. They need to do a clinical trial first and it could take $1.5 - $2M to do the trial.
MikeG: probably more...
Michael17860: If only we could somehow slide into the bail out package
joek: Need to go now
MikeG: know any celeb's that have lot$ that they would be willing to donate to a trial study?
poohsdaddy: They must have spent at least that much at NIH for the dutasteride study.
MikeG: probably so - and I hope the results are promising... but only time will tell.
Michael17860: I'll try to E-mail some celcb's with a sob story..............
MikeG: :)
MikeG: good luck even getting a response...
MikeG: I've already tried several
Michael17860: I not doing anythisg else..............
poohsdaddy: I think that Montel Williams has MS; but that Oprah has more $$$$$.
MikeG: yep - tried her...
Stan: Well, I have to go. Day is half over already and I have to finish putting brakes on the wife's SUV. Next time. Bye everyone
Michael17860: Nothing?
MikeG: take care Stan
UTE: Bye Stan
Michael17860: CU STAN
Gary_KC: BYe Stan
poohsdaddy: Next chat for us in 2 weeks? topic? or guest? Can Dr. Fishbeck get through the security yet ??
Dart!: Y'All take care - try to think positive, as there are many who are worse off!
MikeG: looks like it's about time to go for me too. You guys can stay as long as you want in the chat room. And remember, the chat room is available anytime you want - so, if you want, get several people together and do your own private chat sometime.
Michael17860: Too true, Later Dart
Michael17860: BY all, Have a good one.....
Gary_KC: I got to go. Stay warm, everyone. Bye..
poohsdaddy: Bye. Stay upright and all that.
UTE: Pooh, what part of the country are you in?
poohsdaddy: Just north of Milwaukee, WI.
UTE: Another probably know I was originally from Michigan