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Kennedy's Disease Chat Transcript 03-4-2006
Topic: Open Forum
Host: Terry Waite
TerryW entered the room.
Ron--PA entered the room.
Ron--PA: Hi Terry How are you?
TerryW: doing OK
Ron--PA: Thanks for the info on getting on the chat.
TerryW: We got snow here yesterday and now everything is frozen
TerryW: You are welcome'
Ron--PA: It is really cold here but no snow right now.
TerryW: how have you been feeling?
MICH entered the room.
TerryW: I have been down a bit
PA-PAUL entered the room.
MICH: Good Morning PA and Cal
TerryW: Hi Mich
TerryW: hi Paul
PA-PAUL: HI ALL
TerryW: I have gotten real weak lately
PA-PAUL: i finally remembered when and how
TerryW: I used to be able to get up off floor and now I can barely do it
TerryW: balance is gone
PA-PAUL: hey terry the same is going on for me and it seems to be going faster
TerryW: yep here also paul
PA-PAUL: i wish i could understand
MICH: Weak I can relate to... getting off floor is a big deal... but powerchair for getting out is a blessing
Murf entered the room.
Murf: Morning all
PA-PAUL: hey murf hello
Ron--PA: I was out on Tues. morning and it was icy--was afraid if I fell that I couldn';t get up.
Murf: Ron - you have a new log-in name!
Murf: Morning Paul
Ron--PA: Yes--was trying not to be confusing--just Ron--PA
Gopher entered the room.
Murf: You can run but you can't hide!
PA-PAUL: i like not confusing toooo
Murf: Good morning Gopher
TerryW: hi gopher
MICH: Gopher... how are things in the MIDWEST
Gopher: morning, we are still in AZ
Ron--PA: Still had alot of pop-up interference while getting onto chat. My Grandson had to help me get thru it. He is Annette's son---really smart about computers.
kellyC_ entered the room.
Murf: If you want to fix a computer problem...ask a 6 yr old!
PA-PAUL: or program a vcr
TerryW: hmmmm, the company that hosts the chat sent out a fix for that but it was basically the same fix I sent out. They wanted us to lower our Internet Explorer Security settings to LOW
Murf: Morning Kelly ... cold up there?
kellyC_: yah a little not to bad
kellyC_: lotsa snow
TerryW: my fix was better because it onl;y lowered the security when at the KDA site
Gopher: Terry, I am glad you are a computer whiz
Murf: I will lower mine to medium but never low
MICH: I use netscape and firefox with no problem
TerryW: Gopher so much has advanced in PC,s since I retired that I don't know that much anymore
Ron--PA: Thanks again Terry. How are you and Susanne getting along in the snow?
Murf: We had no rain this winter so I fear we'll have a dry summer.
Gopher: you have always been very helpful!!
TerryW: we have to go somewhere right after chat but the car doors and locks are frozen
TerryW: any suggestions from you all back east
kellyC_: get some lock- de icer lol
MICH: Kelly, are there many Huskys in your neighborhood?
TerryW: we never have to deal with this stuff in Calif LOL
kellyC_: no none that i know of
Gopher: hairdryer to unlock doors
TerryW: good idea
Murf: Don't go outside ...I say LOL
Ron--PA: Save all the hot air you can and use it on the frozen locks. LOL
TerryW: It is stitting in the sun right now
PA-PAUL: i have heard use a lighter to heat the key just before you stick it in the lock But careful where you hold the key while heating
Murf: Move to Texas 75 today
Ron--PA: Hey Terry---you ask and you got advice....Not necessarily good---but advice.
Gopher: Always park near an electrical outlet
TerryW: MUrray we have hills, na na na
TerryW: no tornados
Murf: ok ok LOL
kellyC_: or sunami's hey terry lol
TerryW: Only threat we have here are wildfires
PA-PAUL: hey Murry sorry my travels did not get me down there like i planned this winter.
Ron--PA: Murf--I thought you were getting alot of rain.
Murf: You have an open invitation, like everyone
Murf: No we hardly got any this year
kellyC_: hey does anyone know who the NIH will select kd guy's for the upcoming trial,,, and when they will notify us????
kellyC_: end of march???
TerryW: Coak knows a lot about that
Murf: Did you send in your info?
kellyC_: yes i did
kellyC_: long ago
PA-PAUL: one of these days we have A friend ? snow bird who spends all winters there in Pharr texas and he is always telling me how great the weather is
Gopher: Did you get a respnse when you sent E-mail?
Murf: They your on the list
kellyC_: nope nothin
Murf: You will very soon
kellyC_: ok ty
Ron--PA: John Coakley is the contact or the keep in touch guy with NIH. When he comes on chat we can ask him.
Murf: yes you can e-mail John
kellyC_: oooo ok great
Gopher: So how do you know if you are on the list?
Murf: John will not be with us today
PA-PAUL: i was told i would not be considered I am already taking a similar drug
kellyC_: is john;s email in the kd web page???
Ron--PA: Yes Kelly.
kellyC_: ok ty
Murf: We have so few people that basically if you want to be a part of the trial you'll have a very very good chance of it.
MICH: is finasteride or the test drug already being used for any other ailments?
kellyC_: wondeful i heard that they want pple kd guys who are still mobile etc
Murf: Provided you can still walk a few paces and you are not on any similar drugs
PA-PAUL: well finasteride is for an enlarged prostrate
kellyC_: if i get selected i want the dummy placebo side if the trial lol
Ron--PA: Isn't it strange how sometimes the Kennedy's accelerates and other times it is dormant or doesn't get any worse for a while.
kellyC_: yeah no doubt? ron
PA-PAUL: YES real strange i have had the same thing
Murf: They will also not concider people living out side north America
Ron--PA: I seem to go thru ups and downs. How about you all?
TerryW: same here
MICH: How do you find out more about the drug they're using?
Murf: Here too
Gopher: A concern....doing pretty good now...would drug keep it from getting worse or make it worse
PA-PAUL: i dont think they will say
Ron--PA: I hear that certain drugs making progress in other diseases might also be helpful in Kennedys.
Murf: Ron - that is true
Gary_KS entered the room.
Murf: Some of the diseases that are similar like ALS may also benefit
Gary_KS: Good morning, all!
Ron--PA: Wouldn't it be great, not necessarily for us but for others who wouldn't get Kernnedy's in the years to come.
Murf: Morning Gary
Gopher: My husband has been having more lowerback pain lately, any suggestions
TerryW: back pain all the time?
TerryW: I get the back pain at night the last part of the night
PA-PAUL: did you see the 60 minuite show last sunday about the Dr who is convinced he can repair spinal cord injuries He has done it in ratsfixing
TerryW: Yes Paul
Ron--PA: Back pain is part of Kennedy's--As muscles gret weaker it comes with more pain.
TerryW: That was gfreat
Gopher: No sitting and laying in bed...he just went to answer phone
kellyC_: I'am starting to have the nasel voice at times lol
Murf: I've had that for years Kelly
Gopher: he doesn't want to complain soI don't always know for sure
kellyC_: really since how old were u when it started??? murf
TerryW: Everyone should read the forums & ppost more often
fl-don entered the room.
Murf: I think around 43 or something
Gopher: Forums are great
kellyC_: really ill be 43 next month lol
TerryW: there is a new KD individual that just posted about being diagnosed and needs advise
fl-don: GM ALL SUNNY & 75 HERE IN FL
TerryW: hi don
Murf: That doesn't work that close all the time!! LOL
Dart! entered the room.
Murf: Morning Don 75 and sunny in Houston too
TerryW: Hello Dart
fl-don: and no snow
Murf: Hi Dart
PA-PAUL: ok guys
TerryW: sunny and 26 here
PA-PAUL: partly cloudy and about 35 here in PAZ
Gary_KS has left the room.
Murf: Sorry Paul
PA-PAUL: yes I know you are lol
Dart!: Good morning, All - I've been trying to get in for an hour - sorry!
Gopher: A new question I posted was about weight gain being a side effect of neurontin,butI put it with an old discussionof neurontin
PA-PAUL: some day ill spend more time in warmer weather
Gary_KS entered the room.
TerryW: dart, what was going on
Gary_KS: I am back.
kellyC_: yeah me to paul lol
MICH: Does anyone find it common to be out of breath just after brushing teeth... walking down the hall...etc
Murf: Paul - it's easier on the body
Dart!: I don't know what the trouble was, but no doubt it was me.
TerryW: Yes Mich
TerryW: Slightest effort makes me short of breath
PA-PAUL: hey Gopher I never heard that before but my weight is definitly going up
Murf: I do too Mich
Duane entered the room.
TerryW: hi Duane long time
kellyC_: sheeeshhh i got to quit smoking lol soon .... lol
Murf: Morning Duane
Duane: hello everyone, been busy moving
TerryW: to where?
Murf: I did last year - best move I ever made
Duane: from tx to nm
Murf: for the weather ??!!??
PA-PAUL: Yes terry I have the same thing with short breath I thought it was the open heart surgery from 2 years ago
TerryW: Duane, are you Duane B
Duane: took medical disability at work in dec and can finally say i'm settling in. no i'm duane P
PA-PAUL: where abouts in MN
Duane: actually new mexico
PA-PAUL: sorry yes where at in NM
Murf: Sike of fire and tornatos?? LOL
Duane: southeastern portion 90 miles nw of Midland tx...in the desert
PA-PAUL: the wife and i are considering a move just not sure where
Duane: yep...the wind and fire have not been too kind.
Duane: can breath much better in the dry climate than Dallas Ft worth area.
TerryW: Anyone here taking Prozac?
Duane: nope but thought about it since i started moving :)
Murf: Dry weather
PA-PAUL: I need to either have 2 places or one where it stays medium never hot or never cold Anyone know where that may be???
Dart!: Why Prozac?
Dart!: Bad deal - depression!
TerryW: I was wondering if it works
PA-PAUL: I use venlafaxine for my depression and DO NOT think it helps
TerryW: I have been for 3 weeks now taking it
PA-PAUL: yes it is a very bad deal at times
Murf: I was on it but humor is better than drugs
Ron--PA: Have you'all thought much about chemical castration. I think Mary Lou volunteered me for the project. LOL LOL Says it will slow down Kennedy's
Duane: I rec'd an email from Dr. Fischbeck last week. He indicated the Internal review board approved moving forward with the clinical trial . Hopes to start soon.
PA-PAUL: if humor works god bless you
TerryW: I have used humor for the past 10 years
Dart!: Is there a reason for the depression, like, other than KD?
craig_h entered the room.
TerryW: my tolerance for humor has raised
Murf: Duane - you need to make sure John C has your new address and phone number
Duane: It's better to laugh about it when you can.
PA-PAUL: Mine started 10 years ago when i went from one doc to another and kept being told all kinds of crap but never anything real or good
Duane: i believe he does but will send a followup email to him
Murf: Paul - not always but better than the alternative
craig_h: howdy y'all, was waiting on new dining room delivery ..... now they will be another4 hours getting here
TerryW: I have always held things inside about my KD because I thought I needed to be strong for the KDA but my Doc says that I need to let it go and admit that I am human nad am dealing with this also
Murf: Hi Craig
Duane: I was taking lexapro for awhile. but stopped. saw very little benefit.
Dart!: Yes, one needs someone to talk to!
Ron--PA: Isn't it amazing how some Drs who don't know jack about Kennedy's still want to give advice.....
PA-PAUL: that is very true Terry
Gopher: Admtting you have KD and knowing what it is I think is very depressing
kellyC_: lol yeah no- doubt hey,,?
Murf: We all need people to vent to. It's healthy
Murf: I pay a shrink for that
TerryW: when people would contact me for help & guidance I had to be strong
TerryW: i thought
TerryW: so I kept it all inside
fl-don: is there a way to PAUSE the screen?
PA-PAUL: the good news is you guys all understand but the bad news is sometimes that dont work
Gopher: Especially with the wide range of symtoms and unknown
TerryW: i don't think so don
Duane: when i moved my brother really didn't get what KD was all about. however after the 2nd time I fell and he couldn't help me up...it opened his eyes to how crazy this disease is
Dart!: Yes, Terry, and we can be grateful when we have someone to lean on.
fl-don: impossible to read earlier comments, oh well
TerryW: transcript don
Ron--PA: Terry--you counceled so many people who were going thru depression it is hard to believe tht you are going thru it without help. Talk to me. Talk to Murf. Talk to any of us---we will be there for you.
Murf: Duane - have him strattle you and pick you up by your belt
Duane: we have to be strong for ourselves. No one else. our loved ones understand
fl-don: i'm really looking 4ward 2 october in atlanta
Murf: Terry you know you can always call...any of you!
Gopher: I don't know where KD patients would be without all your help Terry, but doctors need to be more helpful too TY Terry
TerryW: Yes Ron, Just that takes a large toll on one
Duane: all i could do was crawl back into the house and pull up with help of a chair.
Dart!: So what is going on in Atlanta?
craig_h: sigh, the KD crawl, know it well
TerryW: you are welcome Gopher
Murf: I've done that LOL
fl-don: kda conferencs
PA-PAUL: craig did you ever try it out on a long icy drive way??
Murf: I use my lift chair in the house when I fall.
Duane: i'm sure it's quite a site for my neighbors to witness...
craig_h: pa-paul ............... if my driveway is icey ...... my big ol' butt stays inside
fl-don: what is an icy drive????
Murf: Dart - KDA conference October 11-13th in Atlanta GA
TerryW: LOL don
PA-PAUL: ok ok you guys in the warmmmmm
Gopher: Did anyone see what vitamins to take for falls? It was going to be on TV but I didn'tcatch it
fl-don: somthing to do with golf i suppose
Dart!: Thanks Murf.
TerryW: Don in your town that would be a flooded drive
craig_h: one snow flake, I park the car, lock the doors
Ron--PA: Learn to laugh--learn to share...
fl-don: we r pretty high up over sea level. just worry about winds
Murf: Dart - we'll have an announcement out soon
PA-PAUL: is any info about conference in atlanta up on web site??
TerryW: not yet Paul
craig_h: sorry if you've discussed this before I entered, any update on NIH trail?
Murf: Paul not yet
fl-don: i vote we dine at Hooters this year
fl-don: in atlanta
PA-PAUL: sounds good don
Murf: Will fish do?
TerryW: At hooter at least if we fall we can aim for coushins
PA-PAUL: thats it terry good one
fl-don: yeppers to the cushions
Gopher: how many people do you expect in Atlanta based on past years
Murf: Let me know what you all think Please
Murf: We're blocking 60 rooms
TerryW: I think Don has stock
Murf: OK Don
fl-don: both mike g and don s with wives should b there this year
Murf: I think we'll have a good turn out this year
Ron--PA: Don--don't let you mind make reservations your body can't keep---0LOL
fl-don: i went to daytona for the races this year. had a ball. gonna do las vegas next year 4 nascar
craig_h: fl_don. I'd miss going to sporting events. do u go in wheelchair? or can you walk thru a mass of people?
TerryW: I added this paragraph to the what is KD page of the web site, It was taken from Dr. Taylors last chat with us:
TerryW: Motor neurons are long nerve cells that extend from your spinal cord to your muscles. These nerve cells fire to make your muscles contract. In KD (Kennedy's Disease) the nerve cells become dysfunctional and eventually die, leaving the muscle unable to contract
Ron--PA: I guess if you went to Vegas first you wouldn't be able to afford to go to Daytona.
TerryW: The androgen receptor is a protein that lives inside the nerve cell. Lots of cells have the androgen receptor protein, but motor neurons have more than most. The androgen receptor sits around waiting for testosterone to come and bind to it. The binding of testosterone to androgen receptor somehow kicks off the disease. Since men have much higher levels of testosterone, they are affected by the disease.
fl-don: i use w/c for Buccaneers football, Devil Rays bb, lightening hockey, daytona, hooters, etc........
TerryW: this was a good plain explanation
kellyC_: yes terry very good info ty
PA-PAUL: yes terry sorry i missed that chat
Gopher: Wasn't Dr. Taylor's comments meaningful! He was so helpful in understanding KD
fl-don: i play hold-em at las vegas and hooters
Duane: i wish it was easily understood by the folks reviewing / approving my app for disability
Dart!: But did the Dr. not say that testosterone is not known to be good?
TerryW: Hold-em Hooter LOL
Ron--PA: LOL LOL LOL Don!!!
TerryW: your guys
Murf: Dart - that topic was covered very good in that chat. It's posted I believe.
TerryW: when we fall down our minds are litterally in the gutter
fl-don: I use to take testosterone but doc discontinued due to cancer growth possibility
PA-PAUL: yes Dart somewhere in the past they did a trial of increasing Testrone somehow and it was stopped
Ron--PA: It is great to share info and also to share laughs.
fl-don: think kda put out a warning about testosterone use
Dart! has left the room.
kellyC_: yeah i think they did fl-don testerone does not help us kd guys
TerryW: yes, they believe now that testosterone aggrevates KD
fl-don: i used testosterone for many years
Duane: is anyone taking b-12 shots? i would think this could help provide needed energy or could it be harmful? any ideas
Dart! entered the room.
Murf: I used to have testosterone too but now I can't find it
PA-PAUL: i cant find more than that
PA-PAUL: //10 //10
fl-don: mda doc put me on vitamine b-100
Ron--PA: Does use it or lose it come to mind?
PA-PAUL: yes what is B100
kellyC_: bigtime lol for sure lol
TerryW: I think I read somwhere that B vitamins were good for muscles
fl-don: remember, if up over 4 hours, call a doc
TerryW: can't rememember where
Murf: I still take B-12
PA-PAUL: i remember b52's
Murf: I don't know if it helps but it doesn't hurt. Thats what my Dr. says
Gopher: capsules or shots...my dad took shots for anemia
Duane: do you notice improvement with energy levels...
TerryW: 5 mins left until I save the chat session but you can continue to chat on after I save it
craig_h: see y'all next time
Duane: the airplane or singing group? lol
craig_h has left the room.
fl-don: adios from sunny fl, cya in 2 weeks
Murf: Take care Crag
PA-PAUL: hey duane for energy levels my nurologist tried modafiland wow
Gary_KS has left the room.
Duane: was it helpful?
fl-don has left the room.
Murf: Duane - or the shooter?
PA-PAUL: my mind was going so fast and my body could not keep up i went crazy
Gary_KS entered the room.
Duane: oh. that's not good
Murf: That happens to me too Paul LOL
Gary_KS: I was kicked out again and came back.
PA-PAUL: he got the dose ok now and it doews help i at leas want to go
TerryW: sorry gary
PA-PAUL: bye all
Dart!: When do we have our next visit from a Doctor?
Duane: my mind goes fast enough right now that i can't keep up...END CHAT