Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  04-07-2007

Topic: Open Forum

Host: Terry Waite


Chat Participants:



BEGIN CHAT

TerryW entered the room.

craig_h entered the room.

craig_h: morning Terry

TerryW: Morning

craig_h: how are you ?

TerryW: I am doing good.  rested

TerryW: you?

craig_h: that's good

Michael17860 entered the room.

TerryW: Hi Michael

chumar entered the room.

Michael17860: Hi all, How is everyone

craig_h: we just went from 70-80 degree weather to 20-30 ...........  throwing my system for a loop

TerryW: Hello Chumar

chumar: Morning all

TerryW: Wow craig, we just warmed up here

craig_h: hi michael .............  hi chumar

TerryW: I hate the cold

Michael17860: Its a cool 35 here today in PA

Murf entered the room.

robazbob entered the room.

TerryW: Hey Murf

Murf: Morning all

TerryW: Hey Rob

craig_h: howdy did your spring action milking stool work out?

robazbob: good morning all

chumar: Morn Murf

chumar: Morn Rob

Murf: morning chuck

TerryW: Craig, it did not work,  I needed something to sttill push off of to get up from the seated position

TerryW: I sent it back

craig_h: dang, was hoping it was a break thru development !!!

Gary_KS entered the room.

TerryW: I wish it would have worked

TerryW: Hi Gary

chumar: //23 brb

billeric entered the room.

Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.

TerryW: Yesterday we went to the local Hillside Iris Gardens and I forgot my walking stick and I had to crawl up steps to each level

Gary_KS: Hi Terry.

craig_h: oh fun Terry ...........  but you got better guts than me, I wouldn't of tried that at all

TerryW: Susanne stood by some of the steps to allow me to grab her shoulder to get up some

billeric: Good morning guys.  Wonderful Arizona morning.

Michael17860: Terry you should invest in knee pads Ha Ha

Murf: How can you forget a cane??

robazbob: sure  is bill

TerryW: I keep trying even though I may not be able to I still try

TerryW: I was loaded with camera gear murf

TerryW: too some great pics

TerryW: took

Murf: Thats what I've got a chair for ...LOL

TerryW: the hillside gardens are not accessible

Murf: Almost fully chair bound now

TerryW: it is someones private property

Michael17860: At least you keep trying Terry. never give that up...;.

TerryW: they open it up for free

Murf: don't fall

TerryW: I fell a few times last week but I am still together

Murf: I got sick of breaking bones

TerryW: I fell under the horse again

TerryW: He spooked and I thought i was a gonner

billeric: These falls are miserable.  Had one this week-no damage thankfully

chumar: Terry, sounds like you get around alot

PA-PAUL entered the room.

craig_h: that article about the Curry thing was pretty wild, huh ?

Butch entered the room.

Murf: Jan I fell and broke my ankle and tore a tendon

Michael17860: HI Paul

PA-PAUL: hello ALL

TerryW: I was taking his blanket off and the other horse let out a loud scream next to us and the horse I was unblanketing ran around inside its stall with its blanket fragging behind it while I layed on the ground, I thought i was going to get trampled

Butch: Good morning all. Happy Easter.

chumar: Hi Paul,Butch

Murf: Ankle is healed somewhat and tendon is still sore

TerryW: dragging

TerryW: That is good Murf

Murf: Falling hurts and I'd rather not do any more of it

chumar: Gee what a way to go

Murf: I will be oredering another chair which will made 3

PA-PAUL: I agree with Craig_h  any more info on it????

Murf: make

TerryW: the horse got free from its blanket right before it got back to me and it stopped just short of me

Butch: Falling isn't good but it keeps us looking UP. LOL

craig_h: yeah paul, I'd love to see more info about that

billeric: Any updates on the NIH trials?

TerryW: 3 chairs murf>

TerryW: ?

Murf: one for the office

Murf: one for the house

chumar: Nothing from Saskatoon yet

TerryW: cool

Murf: one for going for the mail

doughboy entered the room.

Murf: 3 sizes

Murf: my exterra

TerryW: bill, I am not in the NIH trial so I don't really know

chumar: Murf i will have a Quad for you here

craig_h: paul, maybe we are the onlt 2 that actually read it, laffs

TerryW: hi TJ

Murf: a Z-chair from Pride

doughboy: hi yall

chumar: Hi

Murf: and I have not dicided on the third but will probably be an Invicare M41 or Pride Jet 3

Murf: Hey TJ

doughboy: Murf, you dog, I was sleeping good till you called! LOL!

Butch: You're extremely lucky to be able to have multiple chairs. Makes it a whole lot easier than trying to transport them all the time.

TerryW: Just as long as it's not a Pride Jet Blue 3,  You will never get out of it LOL

robazbob: good morning bill I sold my 2006 mustang conv. wednesday night you wouldn't know anyone selling a caddy cheap in suncity would you?

Murf: I'll go down in flames !!!??? LOL

Butch: Hi TJ How are you?

doughboy: Murf, I walked outside just now and it's cold and rainy, ugh!

Murf: Here too

TerryW: Murf,  you have any influence in lowering those gas prices?

Murf: 45 in Houston today

doughboy: I'm alright Butch how about you!

Murf: HA HA HA

chumar: Grande Prairie,Canada is 32f

Michael17860: great news on  the ASC-J9 compound that DR. Chang is working on.....

TerryW: I am glad I filled up the boat last year before winter 75 gallons

doughboy: I'm 20 lbs. lighter now, did Murf tell you?

Murf: Did you put fuel conditioner in?

billeric: robazbob-I don't have any imediate contacts but the Daily news always has some interesting autos in it.

TerryW: great news TJ,   Slim fast?

TerryW: yep murf

Murf: good man!!

doughboy: No nutri-system

Butch: Good for you TJ. How did you do it?

robazbob: bill, I have been looking at auto hunter and the az republic

TerryW: also drained engine block for freeze protection

Murf: Finally started to eat salads

doughboy: Murf got me on it!

doughboy: Bought me a new truck Thursday, did Murf tell you

TerryW: what kind

billeric: robazbob, you might try a wanted ad in the Daily news.

craig_h: is down 30 pounds on Nutri/System now ......  but I need to get serious about it again

doughboy: Chevrolet, the new body style

Murf: billeric: or eBay

TerryW: cool craig

craig_h: Micheal, for sure, I was vert excited reading that

craig_h: very

TerryW: DOes anyone still do any work in the garden at all

robazbob: that's a good idea bill i'll try it

doughboy: I tell you, nutri system works because ther isn't much to the meals

Murf: Did anyone hear that chevy was built in Europe now?

chumar: I got a Gold Claim

chumar: lol

Murf: TerryW: yup with a telephone

doughboy: Must be why the darn things are so high Murf

TerryW: gold claim?

TerryW: LOL Murf

Murf: Chuck hows it going there?

chumar: cold

TerryW: I still do some weed pulling by sitting on my butt but then my hands give out after a short bit but I still try

Murf: find the big one yet?

doughboy: I feel so good I was thinking about going back to work!  Nah, April fools

TerryW: I scoot along on my butt

chumar: Ya lol

billeric: How do you get up Terry?

Murf: doughboy: me too...about chevy

chumar: I just need to get it out of the froizen ground

Murf: TerryW: that will make un even rows

TerryW: also I have found out that if you hold your neck looking down for too long you have a hard time lifting your head back up straight

doughboy: My father in law has a 5 acre garden I get fresh veggies from him

chumar: True

jameson411 entered the room.

jameson411: good morning everybody!

chumar: Hi J

Murf: I did that Terry and it scared the hell oput of me!!!

TerryW: Bill I get up like a baby does

Michael17860: I hope that they would start trials on ASC-J9 soon.....

chumar: Ya my neck snaps like bone on bone

Murf: Hey James

billeric: What' that?   Slowly?

jameson411: hey Murf...

doughboy: Talk about that Mike if you have any details, please!

craig_h: Michael, didn't that notice say they are testing it on humans for something else right now ?

TerryW: one one knee then but both arms stretched out on groud then the legs spread  and then I can barely get up

doughboy: Whats ASC-J9

Murf: I can't do that anymore

robazbob: me either

billeric: Me neither.

TerryW: I still barely can

craig_h: doughboy, it's that curry thing (I think)

jameson411: i can relate to that Terry... i don't think it'll be long before im there

chumar: I can;)

Murf: I think I'm to top heavy

doughboy: Whats that Craig

TerryW: I have heard that the Curry thing makes KDers be able to move faster.  You eat indian food and then we run for the bathroom LOL

chumar: LOl

billeric: If i don't have a stool  to get my chest on to- I don't get up.

Murf: LOL

jameson411: I lol

Butch: LOL Terry.

craig_h: there was a letter that came out about it doughboy. Give me your email and I'll forward it to you

Michael17860: I think  that it stated that needed to test it in humans

TerryW: That is a Joke from John Pinnett

doughboy3128 entered the room.

TerryW: he is a funny guy

jameson411: yes.. only rats or mice for now

doughboy has left the room.

doughboy3128 has left the room.

craig_h: guess doughboy got skeered

doughboy entered the room.

Butch: I always move fast when it comes to the bathroom....Don';t want to take any chances.

TerryW: wow how dit TJ do that

TerryW: Magic

jameson411: you want to hear someone funny?   Brian Regan...... funniest i've ever heard

Murf: I think he hit the wrong button

TerryW: I will have to look him up on Youtube

chumar: I make $100 bets on Proline here that gets a persons adrenalin going!!1

Murf: welcome back TJ

doughboy: ty

doughboy: don't know what I did

Murf: took a trip and didn't leave the farm

chumar: You forget about any pain you might have had before the bet

Butch: Where did you go?

craig_h: doughboy, need me to forward you that email ?

PA-PAUL: that testing NOT ON HUMANS seems like a crock... It is a natural compond right already approved by FDA why has it not been tested on humans

Murf: lol

Michael17860: Your are right Craig they did state that it was being tested for a different disease.....cancer?

doughboy: Please Craig

jameson411: uranium is a natural compound

jameson411: i won't eat that

craig_h: what's your email doughboy?

doughboy: This email address is being protected from spambots. You need JavaScript enabled to view it.

chumar: So is Platinum for Cancer

Murf: that makes your poop glow

PA-PAUL: its nbot approved by the FDA

chumar: Heavy too

Murf: lol

doughboy: Leave it to Canadians to know about glowing poop! LOL

Murf: lol

craig_h: on it's way

PA-PAUL: i am not trying to joke here I am disapointed something that may be helpful is just sitting there

doughboy: Thank you, Craig

Butch: I have been having trouble with tendonitis. Had an operation last year. Reinjured my right shoulder. Of course all KD'ers have trouble getting out of a chair. But, with sore shoulders it is even worse.

craig_h: Micheal, it said it's in a creme for Acne right now

Murf: where do you think the stuff for all our nukes come from TJ?

TerryW: Anyone have a favorite TV show

TerryW: I like House

TerryW: he craxks me up

chumar: NHL

Michael17860: Paul you are right!   No money going into someones hand .....FDA?????

jameson411: Paul, its the idea of "do more good than harm" for medicine.

doughboy: Mine is American idol and Suvivor, Terry

robazbob: terry house bones all the csi's

Murf: Paul whats up?

TerryW: SAnjaya must go!

jameson411: they need to make sure that the side effects are not worse that the cure

doughboy: yep

chumar: Baseball

Murf: Terry stay on your feet

doughboy: golf

robazbob: for sure howard stern is not helping that fact

billeric: me too, doughboy

Michael17860: Yes, That is one of the uses Craig.

TerryW: I heard that rob

PA-PAUL: what sde effewcts like too many hot peppers your asshole burns

jameson411: lol

chumar: LOl

doughboy: yeah It's been 2 years since I had 2 stop playing

craig_h: paul, eat ice cream afterwards

jameson411: who knows, thats why they have to test it..

robazbob: sanjaya is mentioned on every talk show and there is a website to help him stay

PA-PAUL has left the room.

chumar: I have been watching for 39 years

TerryW: really

Michael17860: Terry you can thank howard stearn...................

billeric: Not my favorite razorbob

Butch: TJ--If you stopped playing does that mean you are getting serious. I'll have to warn Tiger.

TerryW: I don't hear Stern since he went to sattalite

doughboy: Hey PA, Jamerson is right you never know what side effects it may have on you or with medicine your currently on!

TerryW: Sattelite

jameson411: the bummer part about chat rooms is its hard to communicate tone....

jameson411: PA left.

doughboy: Ha! HA!

jameson411: hope he wasn't upset

mobiusloop entered the room.

TerryW: hi

jameson411: hey mobiusloop

jameson411: are you a math person?

kellyC_ entered the room.

Murf: Morning

mobiusloop: Hi, everyone

jameson411: Hi kelly

TerryW: hi Kelly

chumar: I'm not and i havn't got a reply yet. LOL

kellyC_: good morning

chumar: Hi Kelly

Butch: Good to see so many here on a holiday weekend.

Michael17860: I heard that after the idol is over, He will be touring with Michael Jackson.  (sanjaya)

chumar: LOL

Butch: LOL

doughboy: Murf, are your parents still staying with you?

robazbob: very fitting michael

craig_h: hiya Butch, when do you return to Bethesda?

billeric has left the room.

Butch: June 7th.

mobiusloop: Boy, I have a tough time getting up this early

TerryW: early, ?

kellyC_: gosh i slept in myself lol

Butch: How about you Craig?

billeric entered the room.

mobiusloop: No math here

TerryW: where are you

craig_h: wow, would of thought we would of overlapped this time. I'm like May 27 & 28

jameson411: interesting name...

TerryW: I am in Calif

Murf: They just got here last night and will leave Tuesday morning to migrate bak north

chumar: I drove my wife to work at 6:30 am

Murf: back

chumar: Where Murf

chumar: ?

Murf: Winterpeg

johnweeb entered the room.

jameson411: ya, well i'm at work by 6:30 myself ;-)

TerryW: Does anyone have any issues driving and using the brakes

mobiusloop: I get my best sleep from 6 to 8 am

chumar: Oh i used to live there in Manitoba

TerryW: tired on long drives?

jameson411: not yet, but i'm a kd noobie

doughboy: Horses got out on the road this AM, father in law and I were on the road at 3AM getting them back in, took us over an hour!

TerryW: holding up body sitting for long periods

kellyC_: thats a good question terry! at times i have that problem  etc..

Michael17860: I have a hard time holding in the clutch at red lights....

Murf: I just rear ended a car last week

jameson411: doh

Butch: Hardest part of driving is paying for the gas. LOL

doughboy: Terry, my legs get really tired driving very much

TerryW: I get tired on mountain driving because you are always vompensating for the curves with your upper body muscles,  really wears you out

mobiusloop: Travel is getting tugh for me too

TerryW: compensating

Murf: I broke my rule not to drive in heavy rush hour traffic

craig_h: after 2 years of no car payments, I got the "fever"............. sigh, got a payment again

doughboy: I second that Butch,

kellyC_: lol

chumar: There goes my idea of a standard

robazbob: me too, in Oct i drove 3000 miles to N.H.--glad I did it but not going to again  (can't)

TerryW: sometimes I cant get the gas cap off myself

TerryW: anyone else

jameson411: cash only for me

chumar: Hard time opening the doors

coak entered the room.

Butch: Always a strugle Terry.

jameson411: I'm going to NH today to visit family

TerryW: hi John

craig_h: if I'd of paid cash, I'd have a 1976 AMC Pacer

doughboy: Hey did all of you all hear that Murf just wrecked his new Lexus?  He rear ended a lady! LOL!

coak: Hi all!

jameson411: lol

billeric: Oh, bur you should try a van-robazbob!

Murf has left the room.

TerryW: Murf?

jameson411: hi coak

TerryW: TJ you scared him off

Butch: Not funny TJ.

chumar: Hi Coak

billeric: I carry a small crescent wrench-just in case Terry

TerryW: did that really happen?

doughboy: No I'm serious he did

chumar: For the window

robazbob: that's a good idea bill, I think a plane will be the best answer

TerryW: Injurys?

Murf entered the room.

chumar: Hi Murf

coak: You OK?

chumar: LOl

TerryW: Injuries?

Murf: Just got punted

doughboy: No

chumar: Oilers fan

coak: TJ is tattle-taleing you, Murf

jameson411: i'm taking a family vaca... driving a rented RV through Yellow Stone!

Murf: How can save the chat as I will not be able too?

TerryW: I will save it

Murf: who

johnweeb: Hey guys, I just got hit by my neurologist.  I'm in the early

Murf: Thanks terry

mobiusloop: Flying is he only way, they pick you up at the curb and wheel you through the to the gate

TerryW: John, I thought you could not get in

doughboy: Thanks, John

TerryW: Welcome

Murf: First time that happened in a long time

coak: IIh, but no time (again)

chumar: John what was that?

coak: IN

doughboy: Murray while you got punted, I told the guys you wrecked your Lexus they think I'm kidding

johnweeb: My note continues - I'm in the early stages of Parkinson's.  Or, do the symptoms mimic Kennedy's?

Murf: nope I put a dint in it

chumar: Murf had a Lexus? WOW

coak: No log-in problems, only time problems (& spelllen ones)

TerryW: I am not sure of that John

Butch: Just so no one was hurt. Right Murf?

doughboy: 2 months old

Murf: no thank GOD

craig_h: johnweeb, I'm not sure at all

Murf: $16000 damage

TerryW: John,  that may be a good question at one of the upcoming doctor/researcher chats

chumar: Lol

Murf: good insurance

chumar: For a Dent?/

Butch: WOW--you must have dented thew ashtray. LOL

coak: Johnweeb -- drop me a line & I'll get back with you early next week to discuss

Murf: not the green brit

TerryW: ty john

kellyC_: Basically i would say so john-weeb

coak: This email address is being protected from spambots. You need JavaScript enabled to view it.

mobiusloop: Does anyone have tingling feet? That is a symptom that is getting worse for me

coak: Butch -- Any snow now that Easter is here?

chumar: Mo, Yes and fingers

TerryW: Mobi,  my toes are always tingling or just plain old Numb

johnweeb: Terry, ignore the note we sent to you via e-mail regarding difficulty getting in.  We got it to work by tinkering with the password.  Glad that Java download wasn't the problem because the computer didn't want to take it.

kellyC_: tingling feet and finger's yup at times i have that to mobius

Murf: mobiusloop: walk sit move around. thats what I have to do to get ride of that

doughboy: Well I gotta leave now guys, dealership has to put my running boards on my new truck this morning, I'll call you later Murf. Everyone take care and be safe!

TerryW: ok Johnweeb

TerryW: bye TJ

Butch: No thank God. We have an egg hunt today. Don't want to hide the eggs in the snow.

doughboy has left the room.

chumar: Bye D

mobiusloop: My back is such a mess that I am not sure what is causing it

chumar: Too much sex, does it for me

Murf: John you got snow too?

kellyC_: lol

Butch: So long TJ. Stay safe.

coak: jameson -- your vacation sounds great!

Murf: Chuck lier...lier...

Murf: lol

chumar: LOL

mobiusloop: It helps to know if others are having the same problem

craig_h: y'all take care..................she ya next time

coak: No snow here -- called for 4" last night -- it went south

craig_h: see

johnweeb: Do any of you know about head drop or significant weakness in the neck making it difficult to hold the head up?

Murf: got snow in Dallas last night but none got to here...yet

chumar: Bad las year but good now

chumar: last

craig_h has left the room.

mobiusloop: No , just leg and arm weakness

robazbob has left the room.

johnweeb: Coak - Is this your correct e-mail address?  This email address is being protected from spambots. You need JavaScript enabled to view it.?

coak: Glad to hear from you 2 today. Sold the house & moving in mid-july

TerryW: John yes I get that when I do tasks where I look down for long periods

Butch: John....head drop only because of so many brains, Right?

chumar: Moving? Not Canada i hope

Gary_KS has left the room.

TerryW: If you read a lot

TerryW: or do a tsk that keeps your head in the down position

Murf: Ron thats that top heavy thing

TerryW: the neck becomes weak

Gary_KS entered the room.

chumar: Hi Gary

kellyC_: I have alot of neck spasms to

TerryW: welcome back Gary

kellyC_: and weakness there as well!!

Gary_KS: I was kicked out but I could back.

Butch: Not my problem Murf. Not too top heavy.

chumar: Cold weather Kelly?

coak: I loke Canada - but, no. To a 55+ place in Taneytown, MD; about 20 minutes away drom where I am now.

mobiusloop: Muscle cramps in neck

kellyC_: Actually it starting to warm up here in PA now

coak: like

coak: bad fingers today

chumar: Still cool here in GP

Murf: fingers must be cold just thinking about it

TerryW: Nice here in Calif

kellyC_: Muscle spasms... yes i get those alot in my neck...

Michael17860: Kelly where in PA.

kellyC_: terry ur lucky lol

coak: In MD we had 75 at Christmas -- It'll be 25 toinight

kellyC_: I'll trade ya lol places

chumar: Kelly How about snapping in neck?

kellyC_: prince albert sask canada

coak: Where is GP?

jameson411: i hate neck cramps...

TerryW: Snapping in neck only occurs in Mafia patients

jameson411: especially when i'm teaching

chumar: Grande Prairie, AB Canada

jameson411: lol

mobiusloop: What?

Murf: 600 miles north of Edmonton

TerryW: Joke

kellyC_: LOL

chumar: Km s Murf

johnweeb: Hmm, interesting.  We really want to pursue looking into comparisons between Parkinson's and Kennedy's.  The doctor has me on some mild meds to see if it will help.  The meds havn't helped.  So now, with the difficulty holding up my head, my muscles - back and neck- get sore.

mobiusloop: Sorry don't have HBO

Murf: about 1000 mile north of the boarder

Murf: Right kms

Murf: lol

TerryW: John do you keep your head in the down and forward position much like reading

coak: thks.  I'll have to get the Atlas.

chumar: Closest thing to Kennedy's is Huntingtons

billeric: Got to go guys.  Thanks for the chat.  Stay upright.

chumar: Murf Who will win Stanleys Cup?

billeric has left the room.

johnweeb: I can't hold my head up now without support.  Have to wear a collar part of the day.  It started in December.

Murf: I'll send a map to you later, my daughyter lives there

Murf: daughter

TerryW: hmmmm

chumar: Oh yea

Murf: what cup?

Murf: lol

coak: Huntingtons is close in the biological arena, but different in how it manifests

chumar: Whats her last name?

Murf: another american teamm

Murf: lol

Murf: not funny

chumar: lol NYR is mine

Murf: Sacha

Murf: know her?

chumar: First Or last

Murf: Sach Fawn

Murf: first & second

chumar: Not yet LOL

Murf: good!

chumar: I'm Married

Murf: lol

kellyC_: well got to go everyone.... you all take care and we'll se ya next chat session!.....

Murf: really good then

chumar: Bye

coak: All -- Have to go now. Best to you all

chumar: Kelly

kellyC_: bye chuck!

coak: Bye

kellyC_: yes chuck

chumar: Bye

Butch: Must go for now. Here is hoping that you all stay safe and healthy till next we chat. Bye!!

Murf: was it something i said?

chumar: lol

coak has left the room.

Murf: lol

TerryW: see ya

chumar: You too

Butch has left the room.

kellyC_ has left the room.

johnweeb: Bye.  Thanks Terry

TerryW: yw

Murf: did someone ring a bell or something?

TerryW: nope

jameson411: pavlovs calling

mobiusloop: Yes, thanks Terry.

chumar: Got to go shopping for mining equipment. when i go a don't want to be under a roof

chumar: See ya's all

Murf: Take can Chuck

Murf: care

chumar: You's too soon

TerryW: I am about alll typed out

chumar has left the room.

mobiusloop has left the room.

END CHAT