Kennedy's Disease Association

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"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  02-02-2008

Topic:  Open Forum

Host: Murray Williams



Murf: I'm Murray from Houston. How is your weather?

Murf: Hey Terry

TerryW: Hello Murf, PT

P_T_: Nice day here m- sun shining in the 40s

Murf: 46 here too

P_T_: I thought Texas was supposed to be hot

MICH entered the room.

Murf: That's what I thought too. When were you diagnosed?

Murf: Morning Mich

TerryW: Hi Mich

MICH has left the room.

P_T_: Still in the process.  All symptoms point to KD but I'm awaiting the results of the DNA

Michael17860 entered the room.

Michael17860: HI all

Murf: My repeats are also 46 and was diagnosed in 1999

TerryW: Hi Michael

Murf: Michael17860: howdy

P_T_: Good morning all - I'm still learning - what are repeats?

TerryW: Is anyone seeing my text

Murf: CAG repeats

Murf: TerryW: yes

TerryW: Oh, ok

Michael17860: Hi Murf, Terry. I had 60 repeats.

Murf: It tells you if you have KD

Murf: If you're over 40 you one in a million but in a great club!

MICH entered the room.

TerryW: PT, Repeats are the count of how many times the C, A & G   DNA Markers repeat in a sequince in your DNA

Murf: Welcome back //2

DarwynP entered the room.

P_T_: OK I'm waithing for the results

Murf: Hey darwin

TerryW: Hi MICH, Darwyn

DarwynP: hi all

Murf: Hows winterpeg?

Gary_KS entered the room.

DarwynP: warming up today

Murf: Morning Gary

Butch entered the room.

Murf: Ron too

Gary_KS: Good morning. Gary Uchiyama joined from KC.

DarwynP: been low -40s

MICH: Morning all... getting a little tired of one snow front after another

Butch: Good morning guys. How are you?

TerryW: My Nephew lives in Idaho and sent me Photos of the Dumping of snow that they are getting,  10 ft snow drifts

MikeG entered the room.

TerryW: Hi Mike

Murf: Hey Mike

MikeG: Hi Terry

Michael17860: Hi Mike.

TerryW: Mike,  I am trying to figure out what to weat in Orlando

MikeG: nice room full of chatters this early...

TerryW: wear

DarwynP: Hows the pool working out murf

TerryW: hi Gary

Murf: shorts

MikeG: It's warm!  mid 70s

Butch: We have been very lucky here in Penna. We have had alot of rain but very little snow. Only 3 in. two times.

Dart! entered the room.

TerryW: my legs are always cold so I think I will bring some long pants also

MikeG: Hi Murf

Murf: DarwynP: its great but I got to get outside to turn the temp up a little

MikeG: how's the big H this AM

DarwynP: is it cool there also

TerryW: Big H?

Murf: Suns up and now 55

MikeG: Houston

Murf: in Houston

TerryW: oh

Gary_KS: Hi Murf and Terry, I could not joind last two chats because my Internet service was down on weekend. :-(

Dart!: G'Morning All

Butch: Wheb are you leaving for disney world, Terry?

MikeG: Hi Michael, how's the Creatine coming?

Murf: only weeks days?? whats with that?

DarwynP: I see arizona is cold watching the golf and frost delays

TerryW: the 12th

JoeK entered the room.

TerryW: Hi Joe

Michael17860: Doing  very well on it.

Murf: Tom - if you have any questions, and I know there must be lots, just ask. we all started where you are

JoeK: Hi from Greensboro, NC

DarwynP: we loved dinsney went in march and got to trake advantage of the water parks also.

MikeG: I'm still taking the Arginine - doesn't seem to be helping though... I may try Creatine again.

P_T_: The web has been a great help plus the word I'm getting from my Dr at the HOspital for special care in in Bristal CT

TerryW: that is cool Darwyn

Murf: Terry - been e-mailing a new guy Steve that had lunch with Bud. not herre today

Butch: Murf--just to let you know--the power chair that you bought at the auction for the KDA I donated it to my church in your name. You will be getting a thank you from them.

Murf: Great Ron, hope they get some use out of it! thanks.

TerryW: I think I sent him some info in an e-mail Murd

Michael17860: It's worth a try. But you must take it every day to see improvement.

TerryW: Murf

MICH: Mikes...speaking of that the same as cpk...mine was 1060 in reaction to statins

Murf: good

Michael17860: no it is not the same thing Mich.

kellyC_ entered the room.

Murf: Terry has done a great job putting the website together and we try to put up all the chats. so you can read what we normally chat about.

MikeG: No, Mich, that's the amino acid that you can take for strength building

TerryW: I don't see how you guys that live in snow deal with it,  it is so hard to walk in

TerryW: hard on the body

DarwynP: cold in PA kelly?

Michael17860: Creatine helps build muscle.

kellyC_: yes it starting to warm up now minas 20 below

DarwynP: hibernate Terry

DarwynP: that was a nasty cold snap!!

TerryW: my heating bill is killing me

Murf: Tom - this may move fast but believe me... we type slow and make lots of spelling mistakes so go for it! //2

kellyC_: it sure was!!! we had MInas 45 below zero for 5 days here in PA

kellyC_: //10

DarwynP: yes same here in Winnipeg

Murf: Hey Kelly hows tricks?

kellyC_ has left the room.

Murf: that bad eh?

TerryW: lol

DarwynP: lol

TerryW: trick, he dissapeared

TerryW: poof

Murf: poof

TerryW: Now I will make him reappear

kellyC_ entered the room.

Murf: ...

TerryW: See

TerryW: tada

DarwynP: poof

kellyC_ has left the room.

TerryW: And aagain

Murf: hey!!!!! good .... oops

Butch: Kelly--I live in southeastern Penna and we have not had any nasty weather like you have been having. Where do you live in Penna?

Murf: must have a froozen connection

MikeG: Mich, my Air Force reunion group is planning a trip to Vegas in May and I want to visit the Grand Canyon during it.  Which rim is better to see it, north or south?

DarwynP: ke is in Prince Albert Saskatewan

TerryW: yep

kellyC_ entered the room.

TerryW: Kelly,  Stay

kellyC_: keep getting booted?

TerryW: hmmm

Michael17860: I also live in PA and I have never seen it that cold.

Murf: kellyC_: sit

kellyC_: i dont know why?

TerryW: Ice in the PC

kellyC_: lol

Murf: good boy //2

kellyC_: hahaaahahhaahhah

TerryW: Wonder if MS is going to buy Yahoo?

Murf: Tom, we try to have fun too

TerryW: big buy

Murf: I' m going to

Murf: buy MS

kellyC_: its asking me to download the newer version of java ill do that lateron i guess

MICH: I have only visited the south rim... its spectacular Mike... but the Indians put in a platform I believe on the north end of clear glass under your feet

TerryW: yes Kelly

DarwynP has left the room.

Butch: Hi all you other guys from Penna. I live in Lancaster Pa. Just 30 miles from Harrisburgh>

Murf: do it from a chopper well worth it

MikeG: Yes, I read about that walkway - looks like it would be worth seeing.

TerryW: PT  what are your main symptoms that you are showing

TerryW: and your age if I may ask

DarwynP entered the room.

MikeG: Murf, do you have some info on that chopper tour?

jameson411 entered the room.

norminstormin entered the room.

jameson411: good morning everyone

kellyC_: hi darwyn good to see u back

TerryW: Mike you gonna ride a chopper like easy rider?

Murf: on the Las Vegas website, I'll send you a link

TerryW: or helicopter

Butch: lol

MikeG: right :)

DarwynP: was my chun I guess

DarwynP: churn

TerryW: close enough

Murf: Hey Norman !!! how are ya?

norminstormin: hello

TerryW: hi

MikeG: I was going to do the donkey tour until I talked to a neighbor who did it once...

Murf: Cold?

norminstormin: i,m doin goode how are you

TerryW: Ouch Mike

MICH: Welcome Jameson... we have PT here today also from Conn

TerryW: sore butt

P_T_: 72 and am showing most of the symtoms - weakness cramps, tired all the time, problems talking and pronouncing my words properly (which is a major problem because I'm a preacher and other problems to many to mention.

TerryW: muscles

Murf: Cold?

Murf: c

MikeG: YEP!

MikeG: he said it was the worse trip he ever took - and he doesn't even have KD!

TerryW: ok, Thanks PT.  We understand what your are going through

Murf: Saved ... I didn't like that one

P_T_: yep - cold feet and hands and no feeling in some of my toes

kellyC_: how old are you PT?

TerryW: PT thats sounds real familiar

TerryW: 72

P_T_: 72

kellyC_: ok

TerryW: 46 here

kellyC_: gosh u sure had a late on set of KD

MikeG: P_T_, I bet everyone likes your sermons because they

MikeG: are short

TerryW: huh?

DarwynP: I prefer to email as my pronunciation and the effort to talk wears me out.

MICH: PT, I'm 61

jameson411: I'm 34 and I have all those sympoms too

kellyC_: I'am 44

DarwynP: due mostly to my breathing

jameson411: stairs are becoming very difficult now

jameson411: I'm a teacher, so all I do is talk all day

P_T_: Looking back I realize I had some of these symptoms years ago and just figured I was getting older

kellyC_: and suffer with snake bite muscle spasms all over lus speech throat spasm's and my neck as  well

TerryW: Don't talk in calss

MikeG: I can't talk for more than about 10 minutes straight

TerryW: class

DarwynP: stairs seem to be wehere we really notice our deterioration

TerryW: you will get written up

TerryW: LOL

DarwynP: for me anyway

norminstormin has left the room.

jameson411: My last class of the day gets the benifit of my fatigue... I do less talking

kellyC_: yes for sure darwyn

Murf: Tom - sounds like me

jameson411: not in my class, I'm a pushover

TerryW: what grade

Murf: I teach a few courses sitting down and need water for sure

jameson411: 11/12... i teach physics

JoeK: I am 75 --- 2nd one in family with KD

P_T_: yeah, stairs can be a real problem particularly when your bedroom is on the second floor

jameson411: my students are great... almost no discipline issues

TerryW: that is good

Murf: I teach engineers after 4 years of college when they already know every thing //2

kellyC_: lol

TerryW: wow PT, 72 and still climbing stairs.  Amazing

P_T_: I've found that most teen agers already know everything

jameson411: P_T, I go the Walnut Hill Community Church in Bethel.... heard of it?

Murf has left the room.

TerryW: Or they think they do PT

jameson411: oh they do... lol

DarwynP: isn't that the truth

MikeG: that is amazing!

Butch: You are wrong Murf--=at sixteen is when you know everything. LOL

JoeK has left the room.

jameson411: I love my job

MikeG: I had a 2-story with a basement in Atlanta and had to move when I was 54 - too much for me!!!

jameson411: i hope I can do it for another 40 years

TerryW: We moved to a 1 story at 41

P_T_: I preach at a little community church in Staffordville - no I'm not acquinted with bethal churches

jameson411: oh

JoeK entered the room.

jameson411: i've never heard of Staffordville

Murf entered the room.

MikeG: you too Murf?

Murf: terry - i got the put. can you save please?

Murf: punt

TerryW: ok

P_T_: I'm retiring to a small cottage in a Camp Meeting Grounds and my doctor tells me to add a first floor bedroom I guess I'd better do that

Murf: Comcast is terrible

jameson411: Luckly i live in on the 1st floor of my duplex

Butch: Murf--didn't you pay your internet bill that you get booted off. LOL

jameson411: only a few stairs to get in

kellyC_: yes me to no stairs in my home!

Murf: must have been it LOL

kellyC_: all ground level

DarwynP: same here

TerryW: Murf  it's a good thing we backup each other

jameson411: Although the house is over 100 years old.  So the doors are narrow

MICH: Jameson, I have just a few stairs too... but finally had to put in a ramp

DarwynP: it is so much easier on everyone

Murf: me too and pool is 18" ( wheelchair level)

kellyC_: I'am in a housing project here in PA they gave me a apt with no stairs cuz of my KD..

jameson411: So, i'll have to move when I'm in a wheelchair

MikeG: I even had a problem with the 8 inch threshold and had to put a concrete ramp on that!!!

kellyC_: truly grateful

TerryW: Murf has a very nice setup now in his backyard,  the pleasure dome

TerryW: enclosed pool

jameson411: Pool party at Murfs!

Butch: Have you seen any improvement in your muscles since using the pool regularly, Murf?

jameson411: good question

Murf: Its great and you'all have a standing invite

kellyC_: Murf I"LL be there if ya have alot of ladys present lol

Murf: any time!!

jameson411: I'm thinking of getting a YMCA membership so i can start swimming

Michael17860: Kelly C where in PA do you live?

MikeG: Murf, do you walk and swim in it?

kellyC_: east side off of 15 ave and 15 str

Murf: Both and tread water

MikeG: nice

jameson411: you're in TX, right Murf?

MikeG: so you can adjust the flow to any speed you want...

DarwynP: Kelly is in Saskatchewan not Pen.

Murf: I have 4 rails 2" above the water and 3 more to help getting out

kellyC_: lol

Murf: jameson411: yup

Michael17860: Got me on that one. LOL

kellyC_: thats rite darwyn ty.... from saskatchewan canada! the praires

jameson411: long walk from CT

Murf: MikeG: off and HELP!

kellyC_: lol

MikeG: :)

Murf: Yes its adjustable to almost nothing

MikeG: nice - did you ever get a Rx for it?

Murf: but will spill a foot in the air at 14 ft @ full blast

Butch: Are most on the chat today involved in the clinical trial at NIH?

jameson411: I'm not in the NIH

jameson411: but I'd like to be

Murf: MikeG: ya I got Nick to write a letter and a prescription

MikeG: KOOL!

MICH: Sorry but have to run... wheel... to a diabetes expo to learn what I can do for my wife who is presently at work.. you all have a great day and super... bowl tomorrow!

Michael17860: Not I, I already take Avodart.

kellyC_: I had to dro out of the NIH_TRIAL.... personal reasons relating to travel

Murf: MICH: take care

Butch: So long Mich.

MikeG: take care Mich

jameson411: GO PATRIOTS

jameson411: bye Mich

TerryW: Go Cowboys

jameson411: lol

MICH has left the room.

jameson411: uh, they're not playing

TerryW: Oh, my bad

kellyC_: go raiders go lol

Murf: kellyC_: you need to get that fixed if you want to swim in Texas

DarwynP: I was taken off the trial as a precaution due to rapid deterioration.  They wanted to make sure it was the drug causing it.

DarwynP: wasn't sorry

kellyC_: thats what i thought DARWYN

kellyC_: I NEW IT !

Gary_KS: Thank you for sending us ASG-9 research report.

Murf: DarwynP: Glade you could make it to the conference last year

Butch: Sorry to hear that Darwyn.

MikeG: very interesting...

TerryW: yw

jameson411: Darwyn, did they test for ALS ?

TerryW: I would like to make a video about KD and put it on Youtube

TerryW: what do you think

kellyC_: tery u should! good idea

MikeG: good idea Terry

DarwynP: so was I. It helped alot.  Will be my last though as it is too hard to  travel.

Murf: you & me and the mouse?

Butch: Good idea Terry.

Michael17860: Any idea when they will start clinical trials on ASG-9?

TerryW: Mickey?

jameson411: Will people be falling down?

jameson411: cause thats funny

Murf: no Diane's mouse

Murf: on the wheel

Murf: in the movie

Murf: remember?

TerryW: yes

Murf: ok I was worried about you brother

TerryW: How about a reamke of the Fly with Udai

TerryW: Remake

Murf: ok I'm the fly

TerryW: help me

Murf: //13

TerryW: help me

TerryW: LOL

jameson411: lol

jameson411: I know someone who is an expert videographer...

TerryW: hmmm, I will keep that in mind

Murf: we may be able to use a guy like that

jameson411: If you like, I could inquire about getting his help.

Murf: surre

TerryW: will let you know, but check with him anyways for us

Murf: will he work cheap?

jameson411: He has the equipment, or can just work with already done video

DarwynP: No, I'm not going too push them to prove it as there are different variables that can indicate whether or not it is ALS.

jameson411: yes.

jameson411: he will work fairly cheap

Murf: DarwynP: I guess it really donsen't matter does it?

DarwynP: I don't feel the neede for the hasle of more emg etc. take it as it comes

jameson411: Darwyn, I guess that makes sense

DarwynP: right murf

jameson411: That is a good attitude

jameson411: we could all learn from that

Murf: They don't use neddles any more for EMG's

jameson411: no?

Murf: needles

jameson411: They did on me last year

DarwynP: I'm a take it as it come guy

jameson411: I try to be

jameson411: Count my blessings as they come

Murf: they (NIH) use sticky pads now ... yippy!!

Murf: They still electrocute you though

jameson411: I didn't mind the neddles

jameson411: or the needles

DarwynP: still not that comfortable though

Murf: them too //2

jameson411: I think I might need emg for my bells pasly

jameson411: its is taking for ever to get better

MikeG: do they still use the needle for the muscle microphone thingy?

kellyC_: well folks... I'am going to download the newer version of java... be back later if the chat is still on?

kellyC_: bye

jameson411: bye kellyC

kellyC_ has left the room.

Murf: I had a tech scratch my leg bone with one once that really really really hurt!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

jameson411: ouch

MikeG: YEP!

DarwynP: that too bad

Murf: I hate EMG's

Butch: Jameson--how long have you hadf the Bells? How much of a droop did you have?

MikeG: that is more painful to me than the nerve conduction test

jameson411: very little droop

jameson411: about 3 months now

Murf: yup

jameson411: I'm at 40% returned on my right side

jameson411: i'm wondering if the KD is keeping me from getting better

Murf: It didn't help that it was in Holland and everyone was talking Dutch

Dart!: What is with 'the droop'?

DarwynP: good question hard to say though!

jameson411: The muscles on the right side of my face were paralized which cause the whole face to sag on that side

Murf: jameson411: was that a stroke?

jameson411: don't know what caused it

jameson411: maybe a cold i had

jameson411: just a freak thing

Murf: bad cold

jameson411: no

jameson411: minor ear ache probably pinched a nerve behind teh ear which caused the paralysis

Murf: wow

DarwynP: i c

Butch: Only bad droop I have is my Johnson--Do you know what I mean?

Butch: LOL

Dart!: But the face muscles recovered?

Murf: LOL

DarwynP: lol

jameson411: Had to hold my cheek so I can pronounce the letters 'p', 'f' and 'b'

jameson411: nice one butch, thanks for that

jameson411: lol

jameson411: Dart: Most of my muscles on the right of my face are frozen

DarwynP: maybe I should try my cheek also

jameson411: i resemble a KD patient in the later stages

jameson411: //2

Butch: It is really great to have so many on the chat today. Great!!!

jameson411: ya

Dart!: I'm sorry to read that, Jameson - really sorry!!

DarwynP: a few got punted and havenn't come back also

Murf: no of use can play football anymore

P_T_: but I've got to leave glad I found this chat room   I'll return at a later date   thanks alot

jameson411: eh, minor struggle

Murf: non of us

jameson411: bye P_T

DarwynP: bye

MikeG: take care PT

jameson411: good to meet you

Murf: can play foot ball or type

P_T_ has left the room.

Butch: So long PT.

jameson411: I can watch football

Murf: Tom cya

jameson411: GO PATRIOTS

DarwynP: boo

Murf: Yes!!

jameson411: lol

DarwynP: gota go for the under

jameson411: perfection baby, perfection

TerryW: Go Cowboys

Butch: Imagine a perfect seasom. WOW!!

jameson411: cheer on the champion

TerryW: Go Dodgers

Michael17860: See you guys later, got to go.

Michael17860 has left the room.

jameson411: one every 40 years... it'll be history tomorrow boys

jameson411: you gotta watch

DarwynP: bye

jameson411: cya Michael

Murf: DarwynP: cya

Murf: take care

DarwynP: not me leaving

Murf: good ok

jameson411: hey Terry, any word on the skin?

DarwynP: I'll be watching the game with a POP or three

Murf: i'm missing a lot today the fingers are not working very good

TerryW: I have to go back after Disneyworld

jameson411: Disney... fun

TerryW: they have to cut my neck

TerryW: and I did not want it before

Butch: I must go for now. Stay healthy till next we chat. Stay on your feet. Bye!!

jameson411: remove the intruder

TerryW: yes

jameson411: bye Butch, you too

Murf: Ron see ya

Butch has left the room.

Murf: take care

jameson411: I had a biopsy last week

TerryW: good chatting with you all

jameson411: It was good news

DarwynP: boy you type fast jameson

Murf: terry can you save?

TerryW: good Jameson

jameson411: lol

TerryW: Yes Murf