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Kennedy's Disease Chat Transcript  05-20-2006

Topic:  Open Forum

Host: Terry Waite

Chat Participants:




Murf: morning Mich

MICH: Good Morning Murf

Murf: How's your weather?

MICH: We're going up to 88 today... wormer than usual, how about Texas?

TerryW entered the room.

Murf: 75 now but going to 92. I can't wait til summer

Murf is currently away.

TerryW: Hello

Murf: Morning Terry

TerryW: Just woke up 5 min ago

MICH: Morning Terry, hows the weather in California?

TerryW: Nice today

Murf: I'm currently away I guess?

TerryW: been hot near 100's for the past 2 weeks

Murf: I wonder what that is about?

MICH: The hot weather seems to make my feet go numb and tingly even faster

Murf: I would think it should be crisp mountain air LOL

TerryW: seems to think you're idle

TerryW: Hot weather helps my feet & hands

Murf: o well, as long as you can see me

Bruce entered the room.

Bruce: Good Morning

Murf: Morning Bruce

JACK entered the room.

MICH: Howis the weather in Georgia?

Murf: Morning Jack

Bruce: Warm today.  It is supposed to be 83.


TerryW: hi Jack no pun intended

Murf: Jack - are you new?


MICH: Did Rhode Island get alot of rain?



TerryW: that's good


Bruce: As some of you know, I have been putting together an exercise guide for men with KD.  I have sent the draft off to three neurologists for their review.  Linton Hopkins, my doctor, responded with the following addition to a paragraph on the benefits of exercise and stretching.

Bruce: •            Cell inhibition is what happens when an activity just started, such as an exercise (or an acupuncture needle or back scratch or massage), temporarily blocks an unpleasant sensation like a chronic pain. The nerve transmits the pain signal to a cell in the spinal cord which is inhibited by the new "traffic" caused by the new stimulus.  It's why pinching the cheek blocks the pain from the anesthesia needle in dentistry, and why rubbing a child's wasp bite helps the pain.

•          Exercise and stretching (working the muscles and joints) produces stimuli for the spinal cord and brain (central nervous system), which is one reason we feel better when we move.

TerryW: hi Bruce I did not see you come in.

Bruce: Hello

PA-PAUL entered the room.

Murf: Jack - officially in 5 minutes


TerryW: hi Paul

PA-PAUL: hi terry

Murf: Morning Paul

PA-PAUL: hello all

Bruce: Unfortunately, I have to go in a couple of minutes.  I'll be back for the board meeting.

TerryW: ok

Murf: That's a great idea Bruce. I could use some

Bruce: Anyway, I thought this insight into Cell Inhibition was a good addition to the guide.  It explains why we often feel better during and immediately after exercising and stretching.

Murf: Everything ok Bruce?

kellyC_ entered the room.

Bruce: Doing well, thanks.  How about you?

Murf: I'm ok too

Murf: Morning Kelly

kellyC_: good morning all

PA-PAUL: who feels better after exercise

TerryW: Good morning

TerryW: I feel sore

TerryW: after exercise

Murf: I know what you mean Paul. I hurt!

TerryW: I guess I am doing too much

kellyC_: didn't sleep at all last night myself....

Bruce: Paul, I was just explaining something my neurologist told me about a side benefit of exercise called cell inhibition.

PA-PAUL: I feel I will drop after I walk from from of house to the back

DarwynP entered the room.

Murf: What's that Bruce?

TerryW: OK I guess we can officially start the chat session now

TerryW: Anyone have any topic that they want to talk about

Bruce: I'll send it again because some of you might have missed it.  •      Cell inhibition is what happens when an activity just started, such as an exercise (or an acupuncture needle or back scratch or massage), temporarily blocks an unpleasant sensation like a chronic pain. The nerve transmits the pain signal to a cell in the spinal cord which is inhibited by the new "traffic" caused by the new stimulus.  It's why pinching the cheek blocks the pain from the anesthesia needle in dentistry, and why rubbing a child's wasp bite helps the pain.

•          Exercise and stretching (working the muscles and joints) produces stimuli for the spinal cord and brain (central nervous system), which is one reason we feel better when we move.

PA-PAUL: is there an article on it we can read Bruce

SEAN entered the room.

kellyC_: LOL.

TerryW: Hi Sean



Murf: Good info Bruce

TerryW: yes Bruce

Bruce: Not that I am aware of, Paul.  I am certain I can find more on the internet about it, however.  It will be part of my "Smart" Exercise Guide for Men with KD.

Murf: Hi Sean

craig_h entered the room.

Murf: Morning Craig

craig_h: good morning

Murf: Good turnout today

Bruce: I am not certain why the message appeared twice.  Interesting???

PA-PAUL: sounds good Bruce

TerryW: that is strange

SEAN: I found out that I was accepted for the study.  she gave me the dates and times have any of you guys found anything out

Murf: Earlier it said I was away

Bruce: The guide will be designed for 'old farts' like me.

TerryW: Did anyone have any problems getting into chat today


kellyC_: nope  not me

DarwynP: No got in first crack

SEAN: no

TerryW: good


craig_h: I'm going up there soon

Bruce: Terry, I think you solved the problem.

kellyC_: hey Sean when do u go to NIH then?

TerryW: I hope so

Murf: Much easier to login. no one should have problems now. Thank you Terry

TerryW: your welcome

Murf: I go June 20 & 21st

Bruce: Okay, I have to run.  I'll talk with you shortly.  Bye

Murf: When do you go Sean?

craig_h: <---  May 31 & June 1

Bruce has left the room.

Murf: Late Bruce

Murf: Later

Duane entered the room.

Murf: Craig Have you ever been to NIH?

TerryW: Hello Duane

Duane: Good morning all

craig_h: nope, never been

DarwynP: I go Oct. 11and 12

Murf: Morning Duane

Murf: It's a big place

Duane: hello, is everyone signed up with NIH?

SEAN: I left my dates at home but I go in June 2006 December 2006 June 2007 december2007 June 2008

Butch entered the room.

craig_h: I've heard, a guy that I work with takes his daughter there

Murf: Darwyn - Where in Man are you from?

DarwynP: Churchill for now.

kellyC_: ???? I never heard nothing yet ? from NIH. still waiting for there phone call

DarwynP: I was Radionet last week

TerryW: Oh ok Darwyn

Murf: ok I remember LOL

SEAN: they said they would give 1/2 the people the test drug and 1/2 the people sugar pills

DarwynP: Changed as wasn't working for me

Murf: Glade you got on

Murf: Glad

craig_h: kellyc, do they have all your info? They wouldn't send letter until they got genetic test for me

kellyC_: how old are you Darwyn? if u don't mind me asking?


DarwynP: Kelly did you get the letter

kellyC_: yup they do all faxed over there 3 weeks ago

DarwynP: I turned 40 in Oct.

SEAN: I am excited about this even if I am one of the people that just gets the sugar pill.  I think it will help all of us in the long run

Butch: Good morning men. Had a little trouble getting onto chat. For whatever reason it went back to my old chat log-in info.

doughboy entered the room.

craig_h: I'm allergic to placebo

Murf: Me too0 Sean

kellyC_: ok

kellyC_: ty dawyn

Murf: Craig - me too//1 //2

Butch: Butch is still Ron PA.

doughboy: morning everyone

Butch: Hi TJ.

Michael17860 entered the room.

craig_h: placebo makes me weak, increases chance of falling down .................  maybe I'm already on placebo !!!

Murf: Wow everyone is new

Murf: Hi TJ

MICH: Doughboy, what city are you in?

Michael17860: Hello all

doughboy: nice 2 c new participation - Waller Texas 40 miles west of Houston

doughboy: I live close to Murf

Murf: How you feeling TJ?

PA-PAUL: I guess we are not going to pull off a conference this year ???

Butch: Did any of you get your dates for the NIH clinical trial? I am going down on June 5 and 6.

Murf: Paul - Oct 11th to 13th in Atlanta

doughboy: bad - all day yesterday my left arm was completely numb - today the same but also add my 2 legs

craig_h: may 31 & June 1 here

PA-PAUL: thank you murf

doughboy: Mine is Oct. 23rd and 24th

Duane: August 29 and 30th

SEAN: I did Butch they gave me my schedule for the next 2 years

craig_h: I guess first participants are this Monday

DarwynP: Kelly I got my letter from Allison on May 9 and called back on the 11th and booked

Murf: If we threw you in the water TJ, we could call you BOB

doughboy: is anyone else besides me experiencing numbness?

SEAN: yes Allison is who I spoke with

Duane: yes, mine comes and goes

kellyC_: ????? h'mmmm I phoned Alison 2 weeks ago and left a message on her voice mail to call me? and she never yet o-well I guess its not meant to be ? lol

doughboy: How long does it last Duane

Michael17860: doughboy, yes in my  fingers

Murf: I do all the time in my hands and arms

Duane: days

TerryW: I have numbness in hand and feet when its cold

craig_h: kelly, it's easiest to email Alison

DarwynP: Try calling again

MICH: I get numbness in the feet during nite, and in early morning including calves

Murf: Kelly - she'll get to you hang in there

Butch: We have had very cold and damp weather in PA. It has been taking its toll on my legs and arms. Very sore.

kellyC_: yah i guess so

SEAN: shoulders and legs have numbness

DarwynP: squeeky wheel gets grease

doughboy: I mean it's like my arms feel dead is that normal? I called my neurologist yesterday and he said get used to it

craig_h: Alsison has been great returning emails

DarwynP: lol

DarwynP: thats right craig

SEAN: she is a very professional and courteous lady

doughboy: Amen to that Craig, she responds quickly

Murf: Butch - Thats why I moved south LOL

kellyC_: well a friend of mine from arizona says they'll get there 50 men with kd lol  guess i just have to be patient lol

Duane: my left arm is useless most of the time.  just dangles

DarwynP: she's always a pleasure

craig_h: I'm taking that woman a dozen roses, wonder if she like red or yellow??  lol

Duane: don't forget to remove the thorns :)

doughboy: So what do you do Duane how do you function

SEAN: whatever the color you cannot go wrong with roses and  a lady

craig_h: right security might not let thorns in !!

doughboy: Knowing Alison, I'll bet she'd love yellow

Michael17860: does anyone take DHEA/

PA-PAUL: not me

doughboy: whats that

Murf: Nope

DarwynP: I take nothing at all, what is DHEA

SEAN: my wife is going with me is anybody else taking a friend or wife

Duane: very carefully.  Mostly rely on others to help out with yardwork, anything that requires the use of both arms.  can't raise mine over my head.  makes doing laundry, especially folding clothes very difficult.

Butch: Glad to see with all the complications of Kennedys that you guys haven't los your sense of humor.

doughboy: I only take 600mg tablets of Neurontin

craig_h: both of my parents want to ride up with me

DarwynP: My wife is coming


doughboy: My sister Kathy is going with me if my wife can't,

DarwynP: Thats a mouthfull lol

craig_h: is kathy cute and single ???   //2

Dutch entered the room.

Murf: Michael - is that ok with the study?

Butch: Sean0--I am taking my wife, Mary Lou for the tests.

doughboy: you can't take testosterone according to Dr. Chen, I have some because my testosterone level is only 150

Duane: I'm taking my brother.  He doesn't understand the disease.  seems to think if I do more I'll strengthen muscles.  My doctors are concerned with weight loss.  from onset I weighed 182 now weigh 165, losing muscles.

Murf: Morning Dutch - long time

Dart! entered the room.

SEAN: i have been going to see an orthepedic surgeon about my shoulder he is scheduled an mri and my have to do surgey.   do you think my shoulder could be caused by my kennedys

doughboy: Nah she is married 35 yrs now

craig_h: ratz

craig_h: lol

Murf: Morning Dart

Duane: yes your shoulders aree affected.  I have constant neck shoulder and arm pain

Michael17860: I do not know due to the fact that I am already taking avodart.

doughboy: yes Sean

DarwynP: I don't think this is a dating service boys. Otherwise I have a couple of old Aunts I could line you up with.

craig_h: isn't avodart actually dutasteide ?

SEAN: only one of my shoulders are hurting anytime i raise my arm even just a little bit

Duane: LOL

kellyC_: LOL.....

Murf: Numbers Darwyn!!!

craig_h: lol Darwyn

Murf: LOL

kellyC_: //2

Dart!: Sorry, and good morning All. Can you imagine, I forgot. You will have to say it all again, I reckon.

doughboy: Hey Kelly, TJ here, if you don't get in the study and really want too, maybe I'll sell you my spot. LOL,//4

Michael17860: yes it is

DarwynP: 70.  Years that is not number of!

kellyC_: sure why not LOL.....//2

Murf: Where are you going TJ?

DarwynP: Kelly. Your from Saskatoon?

doughboy: what do you mean Murf

Murf: No selling your spot

kellyC_: I'am drinking coffee as we speak and when I swallow it... it comes out of my NOSE? kd muscles in my throat are wasting to darn fast

doughboy: Oh to Keelly for the study

kellyC_: yes saskatoon yup

kellyC_: sask

Murf: I do that some time Kelly

Butch: Strange you guys talking about your shoulders. I have been having alot of pain with my right shoulder. I assumed it was bursidas. It hjas been waking me up at night.

DarwynP: I'm originally from Kinistino

kellyC_: really? small world hey

SEAN: hey guys i am going to have to go back to work  Saturday is the biggest day of the week.  good luck to everyone in  the next couple of weeks .  talk with you guys soon.

doughboy: How are you doing Terry

Murf: It's that flap in back of your mouth

DarwynP: Still lots of relatives in the PA, Melfort and in between areas

Duane: I've found myself doing the "chin tuck" when swallowing...really is a challenge sometimes.  Especially when I get tired.

MICH: My first neurologist seemed to think shoulder shruggs were a good exercise...but after 15 years of KD symptoms it's hard at times to even put my coat on

kellyC_: oh ok is it curable? murf

Butch: Nice to see so many on the chat today. Alot of interest in the upcoming test at NIH.

doughboy: Yeah my throat muscles are not good either, have thought about going to John Hoskins for the ballon treatment to stretch the muscles there

kellyC_: ic ic darwyn, yeah i have alot of cousins in prince albert to

Murf: As soon as they find a cure for KD....yes

Murf: The muscle is not staying up any more

kellyC_: oh ok ty.... murf

DarwynP: My mother had the balloon treatment and seemed to help

doughboy: really, that's good 2 know

craig_h: luckily for me NIH is only about a 4-1/2 drive

kellyC_: I went for a throat assemnet the docters say its all ok????

SEAN has left the room.

doughboy: really, 21 hours for me

Murf: 2 hr flight for me

Murf: you too TJ

doughboy: 2 hrs and 45 min Murf

DarwynP: Were still waiting for her to test for KD carrier.  Could be a sign of symptom

craig_h: 21 hours?  you'd get slayed in gas prices , lol

kellyC_: yup my mom has kd sytoms to

Murf: whos counting LOL

doughboy: I love 2 fly, ain't that right Murf

DarwynP: She falls lots

DarwynP: She's 59

Murf: right LOL

Murf: Interesting Darwyn

doughboy: Well since NIH is paying for flights, taxi's rooms and meals I'm all right with the cost

kellyC_: oh ok. darwyn.. yeah my mom is 63 she has lotsa muscle spams etc..

Murf: NIH will be very interested in this info

doughboy: Terry are you going for the study?

DarwynP: I think more women show symptoms that is speculated?

Murf: could be right

Butch: Terry, How are you doing? Haven't talked to you lately. Hope all is well with you and Susanne.

DarwynP: Airfare from here is 1400 just to Winnipeg Man.

Murf: I hope this thing is not mutating //10

doughboy: Murf could you come over 2 day and mow my grass?//2

doughboy: NIH pays for it Darwyn

DarwynP: Thank G.

doughboy: Is Terry online?

Butch: Hey guys--TJ is selling "grass".

PA-PAUL: he was

craig_h: is that medicinal grass?

doughboy: He has not answered the last 4 or 5 questions 2 him

PA-PAUL: he fell asleep

Murf: may be

Butch: Craig--Not sure.

craig_h: lol

doughboy: Yeah I got lots of grass for sell, tell them where I just retired from Murf

kellyC_: Darwyn,, if you want,, check out my story on the kd web page,,, since that ur canadain lol..

Michael17860: Hi Paul will you be making it up to knobels this year?

Murf: Terry is on the phone with Bud

Butch: We know from whence you came TJ.

doughboy: Wake up Terry

DarwynP: I did Kelly was very interesting. Was why I asked if you from Saskatoon?

PA-PAUL: hi Michael i really want to but only God knows when..

kellyC_: oh ok cool ty daryn

craig_h: the Gov. of Virginia just called out 3/4 of the Virginia Guard to protect the border ........ need to keep them pasky West Virginian's where they belong  .......

doughboy: Yeah Butch I got lots of free grass//6

Michael17860: If you do make sure you give me a call.

PA-PAUL: i promise i will maybe soon.  is your email still same

Butch: Michael17860--Where do you live?

Murf: Terry is trying to help Bud Goodnight get loged in to chat

Michael17860: yes it is

kellyC_: who is bud murf?

doughboy: I think they ought to have a Suvivor show with only KD guys on it, could you set that up for us Murf

Michael17860: Paxinos Pa

DarwynP: I'm just wainting for my employer to make a decision on moving me to Brandon to an inside job.  I can barely do my telephone install job now.

Murf: Bud Goodnight is the guy that owns a few KFC restaurants

kellyC_: ic ic oh....

doughboy: Hell Darwyn go ahead and retire like I did

craig_h: KFC ??  I like that guy already

Butch: Michael--I live in Lancaster, PA.

Duane: yes retire while you can still do things

kellyC_: yup fully retired now LOL

doughboy: Hey Kelly in Canada do you get a big disability check every month

Duane: November 05 I left work on medical retirement.  should've done it sooner!

Butch: Is that retired or retarded....I am more retired than retired. LOL

Michael17860: Butch did you ever here of Knoebels Grove in Elysburg PA ?

doughboy: I went in Sept. Duane

kellyC_: yeah not to bad doughboy but i owe taxes alot LOL

Butch: Yes!

Duane: Just removing the stress from work has helped out.

Michael17860: Well I live 2 miles from there.

doughboy: To hell with them Kelly, what they gonna do shoot you

DarwynP: I'm only 40.  Disability is onlty 70 %. I got one girl starting University this fall and the other next.

Duane: Now the stress is "what can I do without falling down

Duane: ;)

kellyC_: they garnished a portion of my dissability check them jerks

Murf: Kelly - Check with your provincial gov. Taxes is sometimes less for the handicapped

Murf: It is here

doughboy: I doubt it will get better Darwyn

Butch: We will have to get together, you, Paul and myself.

DarwynP: Can't see that option being viable.

Michael17860: Let me know when and where.

doughboy: That really sucks Kelly

PA-PAUL: pick a date time and place

kellyC_: yah I has appley for diss tax credit and got turned down//10

DarwynP: If I have too I definately will go though!

doughboy: why Kelly

Duane: disability tax credit ? how does that work?

kellyC_: ?????? i dunno?

Murf: Do it again!

doughboy: are you not 100% disabled?

DarwynP: That rediculous Kelly!!!

kellyC_: i guess so ? i dunno

kellyC_: well that the canadin gov for u

doughboy: Keep on applying - you may have 2 get a lawyer

TerryW has left the room.

kellyC_: i make to much i guess

Murf: They probably do that to everyone the first time

doughboy: r you still working?

MICH: Michael17860...with your Icon with the hat...are you in the same profession as Doughboy?

kellyC_: yah i will ty  i owe about 10 grand they take off of my pension leaves me poor

doughboy: hell nothing else file bankruptcy, write it off and then they can't garnish your disability

TerryW entered the room.

Michael17860: I was a corrections officer for  19 years for the state of PA

kellyC_: they dont take tax's off on bankrupcy anymore here in canada

TerryW: sorry I was away

Murf: Canadian Law is a little bit different TJ

kellyC_: or student loans etc

doughboy: Oh, too bad, damn Murf I knew there was something wrong with Canada besides the weather

kellyC_: JERKS canadian gov...

Murf: Hows Bud doing Terry?

doughboy: Hi, Terry how are you

DarwynP: Yeah! Canadian Gov gets your coming and going. BATARDs

DarwynP: lol

PA-PAUL: by all until another time

TerryW: I am fine, been really busy

Murf: They're all the same Kelly

PA-PAUL has left the room.

kellyC_: yup.....

doughboy: what - riding your horses

Butch: So long Paul--stay healthy.

DarwynP: Maybe us KD canadians need to get together and  try lobby them somehow?

doughboy: I'd say so Darwyn

doughboy: That's just not right

kellyC_: yah good idea darwyn,,, yup as for me Iam so brain dead in the taxes etc i dont have any schooling or education

Michael17860: Butch, get with Paul and he can let me know where and when we can get togther for lunch.

Duane: got to run, i mean waddle.   take care all.

Butch: Great-- After my visit to NIH. OK!

doughboy: bye

kellyC_: LOL by duanne

Duane has left the room.

Murf: Take care Duane

Butch: So long Duane--stay healthy.

Michael17860: sounds like a plan.

DarwynP: We'll run on the KD ticket.  Too tired to SCREW YA. so we'll be with YA!!! LOL

doughboy: Hey Murf I think I'm ready for that big steak you promised me for my 50th b day

kellyC_: WELL all of my Kd friends got to go now see ya next chat session by alll.........

Murf: I see your feeling better...LOL

DarwynP: BYE

kellyC_ has left the room.

doughboy: NO but what the heck

doughboy: bye kelly

Murf: Give me a call when you feel like lunch next week

doughboy: Terry r u participating in the KD study

Butch: Must go for now. Stay healthy till next we chat. Bye.

craig_h: well, ya'll take care .....

Butch has left the room.

DarwynP: bye butch

doughboy: Bye Butch - sure will Murf

doughboy: you goin 2 Craig

craig_h: guess so, house not gonna clean it self

doughboy: call a maid

Michael17860: Terry are you going to the clinical trial at NIH ?

Murf: I have a tough time cleaning

doughboy: treat yourself

doughboy: get married ya'll

craig_h: as long as it isn't knee level or below, I can clean .... lol

DarwynP: It sure feels good to chat with you'se.  TY to all the organizers of  this site!!

craig_h: doughboy, you sound like my mother now !!!!

doughboy: We like it 2 Darwyn

doughboy: How old r u

Murf: I need to but one of those robot vacume cleaners

DarwynP: 40

doughboy: Never 2 late

Dart!: It has been a 'slice' being with you again, Folks, but I have a housefull of Saskatoon relatives, so I had best go to get them ready for the day.

TerryW: Sorry Michael I was away from the keyboard.  No I am not a participant

doughboy: Bye

craig_h has left the room.

DarwynP: Bye

Murf: Dart Have a good day

Dart! has left the room.

Michael17860: does anyone know if they have the 50 people they need?>

doughboy: When I talked to Alison this past week they were getting close

MICH: Is there anyone besides me and Terry not in the study?

doughboy: Your not going either Mitch

Michael17860: I am not, due to the fact I am on avodart.

JACK has left the room.

TerryW: I could not handle all the travel back & forth

doughboy: oh avodart is one of the no no drugs for the study

doughboy: Terry have you been getting weaker my friend

TerryW: I need to log off everyone.  Have a good day

Michael17860: avodart is the drug in the study

Murf: That will be tough on me too but I'll do it

doughboy: Are you going to try and go to the conference?

TerryW: DOughboy yes my stomach muscles

doughboy: SAorry

TerryW: I don't think I will be attending this year

DarwynP: With my pension plan, have to be min. 55 to be eligable.  Proving 15 yares of disability could be a major pain!

TerryW: :(

Murf: I got too many of those LOL

doughboy: I wanted to meet you

TerryW: bye all

TerryW has left the room.

Murf: Take care

Dutch: I plan to attend the conf.

doughboy: I thought Terry was hosting this chat?

Murf: Great Dutch - You'll have a good time

doughboy: Look forward to meeting you Dutch

Michael17860: it sounds like Terry is not doing well.

doughboy: I agree mike

Murf: He was off helping anothe KD'er Bud

DarwynP: Alison said the conference is at the same time I go to NIH is that true?

doughboy: Depends on your date at NIH

Murf: The conference is October 11th to 13th

DarwynP: Yes then, my date is the 11 and 12th

doughboy: call her and change it

Murf: It will be tough to be at NIH and Atlanta at the same time LOL

doughboy: not if they clone him

Murf: Off to save the chat