Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  03-4-2006

Topic:  Open Forum

Host: Terry Waite


Chat Participants:

Ron-PA
Murf
TerryW
PA-Paul
kellyC
fl-don
Dart!
MICH
craig_h
Gary_KS
duane
Gopher

BEGIN CHAT

 

TerryW entered the room.

Ron--PA entered the room.

TerryW: Hello

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?

Ron--PA: Great!

Ron--PA: you?

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

TerryW: frustrating

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

TerryW: hi

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

TerryW: :(

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: Mountains

TerryW: LOL

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

PA-PAUL: finasteride

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?

kellyC_: yup

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

TerryW: Great

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

kellyC_: phewwwww

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

Murf: //1

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

TerryW: wow

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

TerryW: ok

Duane: actually new mexico

PA-PAUL: sorry yes where at in NM

Murf: Sike of fire and tornatos?? LOL

Murf: sick

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?

Duane: Hawaii

TerryW: Depression

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

TerryW: LOL

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

TerryW: and

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,,?

kellyC_: ron

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

TerryW: sorry

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????

Duane: amen

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

Dart!: gotcha,Murph.

PA-PAUL: is any info about conference in atlanta up on web site??

TerryW: not yet Paul

TerryW: soon

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

TerryW: spelling

PA-PAUL: thats it terry good one

fl-don: yeppers to the cushions

Murf: http://www.buckheadrestaurants.com/afm.html

Gopher: how many people do you expect in Atlanta based on past years

Murf: Let me know what you all think Please

fl-don: www.hooters.org

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: LOL

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

fl-don: //1

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

TerryW: yes

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

TerryW: you

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

kellyC_: yup

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

kellyC_: lol

Murf: //5

PA-PAUL: i cant find more than that

kellyC_: //2

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?

Duane: b100?

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

PA-PAUL: lol

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