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Kennedy's Disease Chat Transcript 01-20-2007
Topic: The Biology of KD
Host: Ed Meyertholen
TerryW: Hello everyone
doughboy: Well, my name is TJ, I live outside of Houston, Texas & I'm 50
doughboy: Hi Terry
jameson411: I'm 33, live in CT and am newly diagnosed (about 3 months ago)
jameson411: hi terry
doughboy: Well nice to meet you, even though we both wish it was under different circumstances
jameson411: true :-)(
TerryW: How is everyone doing?
jameson411: I'm doing great...
doughboy: Tired, totally exhausted, I think it's the cold weather
TerryW: same here
jameson411: nice to meet you too doughboy/TJ
TerryW: It has been a bad 2 weeks
jameson411: I had an easy week at work, so i'm feeling good, even though it is cold here also
doughboy: My Dr. (neurologist) told me last week all they could do for me is to make me comfortable now!
TerryW: Hard Freeze here in California for the past 2 weeks. we are not used to this long at under 32
jameson411: how long have you had symptoms?
doughboy: Since about 28 even though now that I know what I have and what the symptoms are, I know it's since about age 14.
TerryW: Sorry did not mean to throw you guys off track
jameson411: I hear ya...
doughboy: Terry it's been cold and wet here all week!
jameson411: I heard about the loss of citrus in CA...
TerryW: Everybody's Pipes are breaking
TerryW: leaks galore
doughboy: Yeah I heard $5 for a glass of juice
jameson411: You weathers in Tx and Ca are typical of where I am...
TerryW: It's terrible
doughboy: Well I hope it doesn't happen to u
TerryW: I had 1 leak at a faucet at the horse stables
TerryW: but it was a quick fix.
doughboy: Hey Terry are you aware of the online MDA auction, it's taking place until 1/25/07. They have some good stuff!
TerryW: then the pipes to the horse stables froze solid so I have been having to ahul waiter manually for the past week by hand down to keep them watered at night
TerryW: no TJ, I did not know that
doughboy: Yeh you all should look at their web site
doughboy: Well Jameson how are your symptoms, having much trouble with anything?
TerryW: Then the water tubs out in the pasture freeze up each night and I have to take a sledge hammer out to the water trough and break up the 3" thick ice. I can barely lift the 10lb. sledge
chumar entered the room.
jameson411: lots of knotted muscles
jameson411: difficulty with stairs
TerryW: Welcome Chumar
doughboy: Taking any meds?
chumar: Hi all
TerryW: Chunar where ae you from?
jameson411: and the neck cramps are a royal pain... pun intended ;-)
doughboy: Any problems working
chumar: Grande Prairie ab canada
TerryW: 1st time in chat?
jameson411: hi chumar...
Butch entered the room.
chumar: ya always too late
Bruce entered the room.
Butch: Good morning men. How are you all doing? Stay warm and dry.
chumar: ya good idea
Bruce: Good Morning, everyone
jameson411: trying :-)
Murf entered the room.
chumar: need more sun
Bruce: Morning, Murray
jameson411: Hi Murf
doughboy: Well, I don't want all of you who are new to the chat to be afraid to ask what's on your mind, because believe you me, it's been asked before and that's what we are here for.
Murf: Morning all
doughboy: Hey Murf, Hi Bruce
billeric entered the room.
Dart! entered the room.
Murf: Everyone under a blanket of snow?
craig_h entered the room.
Bruce: Morning, TJ
craig_h: good morning
jameson411: More of a sheet of snow...
Butch: Hi TJ. How are you? Are you keeping Murf busy?
billeric: Morning guys from a drippy Phoenix
Murf: chumar: do you have KD?
doughboy: Hey Butch and everyone else, good morning! Murf, who answered your phone this a. m. , a stranger in the houdse!//4
Dart!: G'morning All - everyone is up are raring this morning!
chumar: Ya diagnosed 3years ago
Bruce: Georgia missed the stuff, but we are cold after having spring-like temperatures for most of January
emeyerth entered the room.
Bruce: Morning Ed
Murf: Floyd - We'll be coming to see you this afternoon
TerryW: Hi Ed, Here is our chat host
emeyerth: Good morning all, I thought I was a bit early!!
emeyerth: It is about time he showed!!
Murf: I have a daughter in GP
Butch: Penna. Don't have the snow here in Lancaster, but it is COLD....
billeric: Good morning Ed
emeyerth: How is everyone doing?
doughboy: Hell Butch, I can't stay up with RICH people, you know Murf just got a new LEXUS SUYV this week, a new power chair and lift!
JoeK entered the room.
Butch: Goodorning ED.
TerryW: Nice Murf,
Murf: chumar: how old are you?
Bruce: Murray, how does the chair fit in the SUV?
TerryW: Morning Joe
chumar: Murf, is she working here
Murf: Bruce: had to get a new chair and a new lift
JoeK: It is beautiful weather here in Greensboro NC
Butch: I guess all the hard work paid off----Right Murf...
chumar: im 49 and you?
doughboy: Hi JoeK
craig_h: hi Joe ............ Greensboro is about 2 hours south of me
Murf: Still has a broken leg
doughboy: I think Murf won the Lottery
TerryW: murf you broke your leg?
Murf: TerryW: fell & broke the foot again
chumar: Murf where are you?
doughboy: Chumar your right at Murf's and my age, we are 50
Murf: Front doors og the Lexus dealership
Butch: Hey Murf--you got to stay uprightr and on your feet.
Apache entered the room.
TerryW: Hi Apache
emeyerth: Good morning Apache
Murf: Morning Jerry
Butch: Hi Jerry.
billeric: Good morning Jerry
billeric has left the room.
Apache: Good Morning All
doughboy: HI Jerrry
Murf: I now live in Houston
JoeK: I went to the ALS/nuro clinic in Charlotte. They got me moving again
robazbob entered the room.
craig_h: what did they do for you JoeK?
TerryW: Hello Robazbob
Murf: All - We lost one of our chatters ... Wolfman has passed away
Bruce: Morning Jerry
chumar: where do you live Murf
billeric entered the room.
Murf: chumar: Houston TX
TerryW: Wow, Full house today
billeric: sorry guys, something kicked me off.
Murf: Wolfman lived in Sundre Alberta
doughboy: We guys Murf and I are going to a disability conference/show in San Antonio next week in the new Lexus. Hope we see some good disability aids there to help us. Murf needs a cast Iron foot!
Murf: He chatted with us in 2005 to 2006
Butch: Nice to see so many here on the chat. See what you do for us Ed. Everyone is hungry for info.
TerryW: Bill were you trying to do anything else on the PC when you got knocked off?
billeric: No terry
Dart!: Was Wolfman in bad shape - like a lot of pain, and having a lot of years?
emeyerth: Butch, I wish I could believe that!
chumar: Murf can i get your e-mail?
craig_h: I thought this was free beer day
Murf: I don't know you can view the chat transcripts on our website
jameson411: good one craig
doughboy: Me too
JoeK: A new walker -- new power chair tha will cost med care and my insurance $25,000!!!!
DarwynP entered the room.
jameson411: wow... thats a lot of dough
doughboy: Joe, is that chair Gold
jameson411: JoeK any expenses out of pocket for you?
Murf: JoeK: my walker - $100 Lift $2900 New Z-CHAIR $3100
doughboy: My new chair was like 8,500
JoeK: I am not sure, none yet
Murf: Z-CHAIR is new for 2007 from Pride and only 18" wide
Bruce: Ed, is there anything new and exciting on the research front?
chumar: hi Darwynp aunt Marion is here with me
craig_h: I've been so much stronger after they found out I'm diabetic ............... some mornings I almost walk ... GASP ...... normal
Murf: The ajustable arm rests make it wider
doughboy: Hell Murf your butt won't fit in that! //6
Butch: Murf--18 in. wide...How do some of us big butted people fit?
doughboy: Hi Darywn
Murf: doughboy: //2
emeyerth: I do not remember seeing anything real exciting with regard to KD
emeyerth: There was one report of possible affects on upper motor neurons
Murf: Butch: good for 250 pounders like me... your ok
emeyerth: This was, if I remember correctly, just one patient.
Murf: What is that Ed?
craig_h: Murf, did you go the NutriSystem route?
DarwynP: How are things going chuck
Murf: craig_h: not yet //5
Bruce: Ed, I remember something about this at one time, but can't remember where. Question: Does the severity of KD become greater the longer it is in the family line (more generations)?
emeyerth: It is generally thought that KD affects only the cells that directly tell the muscles to contract
craig_h: murf, since around Thanksgiving, I'm down 26 pounds
emeyerth: These cells are sometimes called lower motor neurons
PA-PAUL entered the room.
doughboy: Well I was telling Jameson & Tewrry about the online MDA auction that's going on now, has anyone else seen it? It goes until 1/25/07, everyone needs to buy something & support them!
chumar: Good Darwyn, not too bad at all,you?
Murf: craig_h: WOW great! what is your secret?
emeyerth: There are other cells that tell the lower motor neurons what to do, these are the upper motor neruons
craig_h: just sticking with the NutriSystem
PA-PAUL: HELLO aLL
Murf: Hey Paul
doughboy: Hi Pau
emeyerth: This was the first pulication that I am aware of that talks about problems with upper motor neurons in KD -
TerryW: I have had a strange theing happen a few times with me and was wondering if anyone else has noticed this... When I get startled or paniced because of something that has occured like say my horse gets loose and I panic that he will run into the street and I start to try to catch him I have noticed that my legs go totally limp and I can hardly move . I also noticed that adrenalin is pumping but my muscles are far worse at that time and I can hardly walk. This has happened many times.
emeyerth: ALS affects upper motor neurons
Bruce: Ed, was this the result of some research?
JoeK: MDA is making $2,000 gift on my new chair
TerryW: I also fall
TerryW: I think the release of adrenalin triggers something
DarwynP: I'm all right. Proggressing pretty fast though, i"m using a manual wheel chair for work and any outings now.
emeyerth: IT was a clinical observation, as far as I can remember
craig_h: Terry, when I panic (like if my feet slide a little) I need a chair right away. I panic and I'm useless
Murf: TerryW: that's not good!
chumar: Terry,Yes or try and get up after
Bruce: Terry, I noticed that happening when I was in a car accident ... someone hit me ... and I was rubber legged afterwards.
emeyerth: I am not that confident that it is really applicable to all KDers
PA-PAUL: Hey Terry I believ this has happened to me but only a couple time, I did not make the association
TerryW: yes, I think something happens in my body at that time
doughboy: I think that happens to most whenever there's an accident
Murf: chumar: are you in a chair yet?
TerryW: I need to inform the doctors about this
Bruce: Yes, Ed, that is also the first I heard of that.
emeyerth: Bruce, I am not sure there is any evidence that it gets worse, but I could be wrong
Apache: Terry, I think the release of adrenalin may caus you to overload your muscles to exhaustion almost instantly.
Murf: Ed can we ask Diane if this is something?
chumar: No i seem to be improving, at least that is what i have been telling my self.just the swallowing is getting worse
doughboy: I know since it's been cold here, my muscles ache more and it's harder to breathe
emeyerth: Murf, Kurt is on for the next chat
TerryW: you would think it would make my muscles work better, but its the opposite,
craig_h: with the muscle waekness in the face, how do you guys keep from having toothpaste all over the mirror?
Murf: Apache: good point
Murf: emeyerth: let's remember to ask him
TerryW: I get it all over my mouth & lips
Barb entered the room.
Murf: craig_h: house cleaners
craig_h: ok, so cleanup after the fact, gotcha
Bruce: I recently bouught an electric toothbrush, boy does that work far better than the manual process.
chumar: Has anyone tried mineral water??
DarwynP: That's good chuck, my swallowing isn't great and finding breathing givesme trouble quite often lately.
Bruce: Moring, Barb
Murf: Bruce: me too Bruce and find it better
DarwynP: Your right Bruce, I've used one for a couple years love it.
doughboy: The Dr.s just told me my lungs are only inflating to 60% capacity because of muscle weakness
TerryW: not me chumar
Bruce: My dentist recommended it for cleaning and I was impressed with how much easier it is to brush.
chumar: Dawyn, did you go to get a swallowing test done ????
Murf: Hey barb: Is it snowing in Dallas today?
doughboy: I did Chumar
TerryW: The swallowing test is hard
Murf: chumar: me either
TerryW: very hard to swallow the stuff they give ya
doughboy: Yeah, that's like my third one over the past couple of years
DarwynP: yes, back in October at the NIH trial. It was good still at that time.
chumar: ya lots of fluids to follow
Bruce: Ed, one thing that continues to baffle me is why some have earlier onset, others much later, some have some symptoms and others do not have them. Is this something to do with genetics, previous damage, or what?
TerryW: Chumar I had a pooling place where the stuff was getting caught where the Y to the airway & stomach is
doughboy: Well I guess everone knows where the conference is gonna be this year, or has it not been announced yet!
DarwynP: The wife says suck it up and quit feeling sorry for yourself. HAHA
Bruce: TJ, we were waiting to announce it because Murray said you had something to add before we sent it out.
emeyerth: There is no real answer that I know of - it may have to do with androgen levels and possible other factors that we do not know of
Apache: I have the same problem as Terry, more pronounced with liquids than with solids
Bruce: There are still so many unknowns.
doughboy: Yes I do I guess I need to talk to Terry or you about it!
emeyerth: Try that again
chumar: Apache do you sis up alot
TerryW: call me if you need TJ
emeyerth: Bruce, that is correct
DarwynP: I haven't seen what hotel and when the conference is yet
Butch: There are times that I can choke on food,sometimes liquid, and sometimes just air.
JoeK flirts with Bruce
TerryW: same herre Bruce
chumar: Brusce how true
JoeK flirts with Bruce
doughboy: I will Terry, I don't know if I still have your number, maybe you could e-mail it to me
TerryW: its the KDA number on the website TJ
jameson411: i think joe is playing w/ th chat settings :-)
doughboy: okay, Terry
Bruce: I am still amazed at the number of people still misdiagnosed initially. It seems like we receive something every week. There are still many doctors out there that don't know about or know very little about KD.
jameson411: my family doctor had never heard of KD before me...
Apache: chumar: When I am laying down and begin to choke, I have to sit up to clear my throat
doughboy: Why is it that there is not more knowledge among the Dr's
chumar: Wondering if we have a KD1 & KD2?
DarwynP: same here jameson
Murf: We will announce the conference this weekend.....2007 KDA conference Golden Nugget in Las Vegas November 6-8 2007. Be there or be square
robazbob: that's for sure I have to tell my doctors all about the disease
emeyerth: There was another clinical observation published that a patient got worse with testosterone treatment
JoeK: True --- how do I make that stop
TerryW: KD1 & 2?
jameson411: because almost noone has this very rare disease...
Murf: chumar: you got to make the conference
TerryW: Joe, Stop flirting
TerryW: Joe make sure no ones name is highlighted on the right
chumar: Will try,as i have a camp out in the bush and will be done there in Oct
doughboy: To everyone, this was my first conference in Atlanta this year and I can't tell how much better I felt, but Murf can!
Apache: I don't choke on air, but sometimes while breathing in, i WILL INHALE SOME SALIVA
emeyerth: I would expect that among family doctors, KD is not well known as it is very rare
chumar: Murf i need a passport too now
JoeK has left the room.
emeyerth: There is no excuse, in my opinion, for a neruologist not to know
robazbob: not family doctors specialist's
Murf: Apache: me too
JoeK entered the room.
jameson411: My neruologist thought that KD would only effect my speach and nothing else...
Murf: chumar: get one now they take 6 months in Canada
doughboy: My neurologist is going to try to come to the conference this year
jameson411: And this is weeks after he diagnosed me with KD.
robazbob: boy was he wrong
chumar: Terry i think there is more to this ilness(1&2)
chumar: Ya at least Murf
Bruce: Ed, we had an email this week from a family who's father was just diagnosed with ALS ... he is in his 70's, but after looking at the symptoms, the family believes he has KD. Of course we said to have the DNA blood test to validate whether KD is at play.
emeyerth: The first neurologist I saw told me that he had heard of KD but knew nothing about it - and that if I did research for him, we could discuss it! I never went back
Butch: I still feel that we need to get as many brochures on Kennedy's to the KD individuals so they can use them as educational tools for Dr. and others..
chumar: Where are you Jameson
doughboy: WE just had my nephew tested this week, should get the results shortly, but I bet he has it
PA-PAUL: the DNA blood test If i remember it took about 2 weeks to come back How about others do you remember how long it took??
jameson411: in CT
jameson411: near NYC
craig_h: Butch, is the brouchure downloadable where we can print it ourselves?
Bruce: Ed, at the conference, one of the researchers or the genetics person commented about 'borderline KD' ... my term. Is that something viable?
Murf: chumar: I can help ...still Canadian for a few more yrs
jameson411: I am now going to UCONN medical with a neurologist who has a dozen KD patients.
DarwynP: Paul about 2 months in Canada
billeric: I must have been lucky, I have seen at least a half dozen neuriogists and all of them are quite aware of K.D.
TerryW laughs at JoeK
emeyerth: Bruce, I do not recall that, was it in relation to number of repeats?
TerryW smiles at JoeK
Bruce: Terry, now you have the bug
PA-PAUL: thanks DarwynP
Murf: Terry ... you two got something going?//2
Bruce: Yes, Ed. I didn't wrwite anything down unfortunately, but it was something like 38-42 borderline, 43 and above ...
PA-PAUL: My cousin is waiting for results
jameson411: different colors help to know who is speaking... I recommend that some of you chose something other than black
Apache: Bill, have you seen Dr. Sivakumar?
Bruce: Does anyone else who attended the conference remember that presentation?
robazbob: the only one I found was dr. timothy munsat iat tufts medical center in boston ,since moving to az I have to tell the dr.'s about it
jameson411: it is the third icon on the bottom left, the square with the 4 colors
billeric: yes apache
Murf: Bruce: which one?
emeyerth: Bruce, that is not surprising - I doubt that there are many with that number of repeats, so I would expect little is really known
TerryW: SOmetimes other than the scheduled chat on Saturdays I would like to chat. I need to come up with a plan on this.
TerryW: the chat room is open 24hrs a day
jameson411: i have 50 repeats... does that speak to my future symptoms?
PA-PAUL: we should all agree on a good "other " time for informal get togethers
Apache: Bruce: I remember that, not certain about the numbers though
Bruce: May I recommend to all chatters today to send the KDA the names, addresses, and phone numbers of the neurologists that you see that know about KD. We can add them to our web list.
billeric: good idea pa-paul
emeyerth: jameson411, not really other than you have KD
chumar: In our lab the didn't tee how many repeats
jameson411: ED, ok...
emeyerth: the relationship between severity of the disease (or age of onset) with repeat lenght is not that strong in kD
Murf: what numbers I missed the first comment
chumar: what is???
jameson411: Are there any relationships known?
PA-PAUL: I requestede a printed copy of the blood test and i believe i have 53 repeats
doughboy: Ed my repeat numbers are 61 repeats
jameson411: you beat me ;-)
Dart!: What is this 'repeat' that yoyu speak of?
emeyerth: in other diseases like KD that have the repeats, yes
emeyerth: I think that KD is different in that it requires testosterone
DarwynP: From this chat the repeats don't seem to be a big factor. My is 45 and have progressed way faster than anyone else on this site from what I can tell even more than people with higher repeats.
doughboy: my testosterone level is 150
emeyerth: and thus there are other modulating factors regulating the severity of disease
jameson411: Darwyn, how long?
jameson411: are you still walking
chumar: How about Enzyne levels Emeyerth?/
DarwynP: AR CAG Repeats the gene test that indicates KD
PA-PAUL: testosterone and sexaul activioty how do they go hand in hand?
emeyerth: Dart!, the genetic defect in the gene is a repeat of the molecules that make up DNA
doughboy: I don't know Darwyn, but what I do know is that now that I have started a downward progression, it's really speeding up!
DarwynP: I was diaganosed first attempt in February 2006
robazbob: will your repeats progress as the kd gets worse? I was diagnosed 18 years ago
PA-PAUL: I mean how much sex will affect the amount of testosterone in the blood??
Murf: Negative (33 or below) Grey Zone (34-37) Positive (38 or more)
PA-PAUL: does anyone know
Murf: what is SEX?
emeyerth: Specifically, in the gene affected by KD, the DNA has a region where there is a repeat of three molecules, CAG (each letter represents a molecule)
PA-PAUL: Yes Murf
DarwynP: I just had a bad limp at that time. Now wheelchair for outings
Bruce: Ed, Murray believes he remembers it also. It was 38-40 for borderline. I wonder what symptoms borderline people have versus full blown?
chumar: Murf its when you and your hand......
jameson411: thanks Murf, thats encouraging ;-)
emeyerth: IN normal people, the number of repeats opf CAG varies between about 15 and 40 repeats, in KD patienst, the repeats are greater than 40
PA-PAUL: I believ as it came to a decrease the KD got worse faster? an I crazy or does anyone else agree
Bruce: It is my understanding that the repeats do not change.
Murf: chumar: //2 LOL
Murf: Bruce: that's what they say
Bruce: Thanks for looking that up Murray
emeyerth: I do not know of a correlation in which sexual activity regulates testosterone levels although I expect the opposite is true
PA-PAUL: AS MY SEXUAL ACTIVITY DECREASED MY KD DID GET WORSE
Murf: Bruce: lower than I remember
DarwynP: The guys say it progresses and plateau's. I'm still waiting for a plateau.
Murf: PA-PAUL: BINGO! me too //10
Murf: DarwynP: LOL
chumar: Emeyerth I had a very strong sex drive when younger
robazbob: I have found warmer climates slow down the progression
TerryW: didn't we all
jameson411: Paul, maybe you sexual activity decreased because of worsing symptoms?
Butch: Paul--It didn't get worse for lack of sex--just made you think about it more. LOL
emeyerth: or that the AR is not working as well
chumar: Testesterone loss ??
TerryW: Has anyone read on Male Menopause.
PA-PAUL: I too HAD a very high sexual activity
PA-PAUL: maybe that is true
jameson411: I'm finding that I am often tired and that makes intimate time with my wife less frequent
Apache: I think the decrease in sex drive and decrease in the ability to have sex are characteristics of KD progression
Murf: PA-PAUL: I think we all did
Bruce: I guess all we can do is brag about it these days
chumar: Pa Paul lots of kids?
TerryW: There was a TV show on Male Menopause the other day, loss of testoterone
billeric: You guys complain-I am 72 with K.D. Talk about lack of sex drive!
emeyerth: KD affects the testosterone receptor, and it is possible that as one gets older, the receptor does not work as well
Butch: Paul--does your wife know about your high level of sexual activity....LOL
jameson411: well sex stops at age 50 anyway, right...
PA-PAUL: no just my mistress LOL
chumar: LOL good one Butch
TerryW: So when I get grouchy I can now blame it on Male Menopause
Murf: billeric: your not alone but I'm alittle younger
PA-PAUL: I just turned 61
jameson411: Terry, your turning blue
PA-PAUL: 3 sons
doughboy: Well, I gotta run, Murf what time are you coming to meet me at Weasers, she asked me this morning and I told her it would be this afternoon. She can't wait to see your NEW Lexus!
jameson411: breath man, breath
TerryW: I don't know why
TerryW: my color keep changing
robazbob: i am 41 and sex drive is in neutral
TerryW: maybe it's a mood font
emeyerth: Bruce, I would doubt that there are many in that in between range of repeats - and I would guess that some may have minor symptoms and others none - but this is all aguess
DarwynP: I'm same age rob
jameson411: i'm 33 and it is in 1st gear... gotta get the RPMs screaming to get anywhere
doughboy has left the room.
TerryW: I think I am 46
Murf: jameson411: get it while you can
chumar: Terry but feel 96?/
Apache: I,m 51
chumar: me too
jameson411: am i the young one in the room?
Butch: So long TJ----Say hi to Weeser. Stay healthy.
DarwynP: Heck maybe 96 feels better!!
chumar: hope so
Bruce: I need to get the dog out for a walk before the BOD meeting. I'll catch you later. Be safe and healthy out there and remain upright!
DarwynP: Sounds like it jameson
Bruce has left the room.
Butch: Terry--why do we have all these different colors on the chat today?
TerryW: My neighbor that just had open heart surgery with a Quad bypass and he is 82 has mor strength than me
emeyerth: Butch, we learned how to change them!!
robazbob: I was always good for 2-3 times a week untill I turned 40 then it stopped all together
TerryW: Bruce the little color bar at the bottom
chumar: sounds like our 76 yo neibour that shovels our snow for us
craig_h: well .................y'all take care. See ya in 2 weeks
jameson411: bye craig
TerryW: see ya craig
craig_h has left the room.
PA-PAUL: bye all
PA-PAUL has left the room.
jameson411: bye Paul
TerryW: Ed, I will save he chat since I was here early on
Murf: All Gotta run (LOL) chumar e-mail me
jameson411: I've been tasted to clean the bathroom by my wife, so i'm gonna hang here for as long as i can
jameson411: bye Murf
DarwynP: Chuck has Marion talked to my mother lately?
Murf: terry you save?
emeyerth: Okay - I do not know how to do that!
robazbob: this was my first chat and it was very informative ,looking forward to the next chat bye for now
chumar: Will do Murf
Butch: So ldong Murf--stay healhy--may your foot heal quickly.
TerryW: yes murf
robazbob has left the room.
Murf has left the room.
DarwynP: bye rob
chumar: a few days ago DarwynP
JoeK: bye Joe Kerley
emeyerth: Terry, I will not make it to the BOD today - I just wanted to let y'all know
JoeK has left the room.
DarwynP: so you know that she is officially a carrier
TerryW: bruce are you hosting the call
chumar: she is feeling somewhat guilty as she loves u so much and worries about u
TerryW: oh hes gone
emeyerth: There were so many people, it was hard to follow the conversations today!
jameson411: yes, but the colors helped
TerryW: yep a bit
DarwynP: Yes, that's mom. No surprises there. Takes alot to heart.
chumar: she sure does
chumar: Marion sends her love
emeyerth: MY aunt felt very guilty about giving KD to her sones
DarwynP: Back at ya's
jameson411: my mom too, as if she had a choice...
DarwynP: your right jameson
chumar: As fathers we feel the same about our girls
DarwynP: just have to move on and deal with it
Butch: Well--great chat today. Must go for now. Stay healthy till next we chat. BYE.
chumar: ya thats the fun part lol
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jameson411: bye Butch
emeyerth: I felt bad about the guilt as they had no idea that the disease existed
chumar: try and make a better life for the kids
chumar: as too kd
jameson411: my mom has 6 sisters, so the disease did not make itself known until my generation
Apache: It's been nice chatting with you all. Talk to yo in a couple of weeks. Bye
jameson411: bye Apache
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TerryW: Everyone remember that you can come to the chat room early if you wish, some of us are herre 15 in early
TerryW: I think I am about chatted out
billeric: Me too, se you guys.
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Dart!: I'll remember the invitation for 'early'Terry.
DarwynP: My hands are starting to give out on me so ithink I'll say good bye also and hope to chat next time.
TerryW: see ya
chumar: Bye Darwyn
DarwynP has left the room.
jameson411: ED, what are the chances that I pass this defect onto my daughter? My nuerologist said 50%, but i've read 100%... which is it?
Dart!: Thanks a bunch, Folks, and sorry about Wolfman!
emeyerth: There is a 100% chance that they will be carrier
emeyerth: but they should not have the disease
TerryW: me also Dart!
chumar: Mother to daughter?
jameson411: thats what I thought, based on the x y thing...
emeyerth: they will have a 50% chance of having a son with kd
chumar: Ed how aabout mother to daughter??
emeyerth: a mother who is a carrier will give the bad gene to half (on average) of their daughters
emeyerth: chumar, 50%
jameson411: but father to son is zero, right?
jameson411: hi Barb... you've been quiet today
emeyerth: so my mother was a carrier, all sons had a 50% chance of KD, daughters a 50%^ chance of carrier
TerryW: I will chat with you all agin soon
chumar: Bye ya all going to get a passport app ready for nov.
jameson411: bye Terry... thanks for everything
TerryW: you are welcome