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Kennedy's Disease Chat Transcript 10-21-2006
Topic: Post conference discussion
Host: Terry Waite
Michael17860: HI Terry
TerryW: we are a little early
TerryW: hows things?
Michael17860: Terry did you make it to the conference? I am doing OK, and yess we are early.
TerryW: No, not his year. This is the first one we missed
TerryW: We will be at the next one
Michael17860: Where will that Be?
TerryW: Las Vegas
Michael17860: Money is the big problem for me.
TerryW: Good air fare prices to Vegas
TerryW: better than most places
Michael17860: How is your health?
TerryW: doyou collect SSD
TerryW: My health is ok, I have fallen a lot lately about 10 times in the past week
TerryW: I have been trying to do too much
Michael17860: Yes I do, I also get a small retirement from my work.
TerryW: that's good
TerryW: SSD is supposed to go up in Jan
Michael17860: I hope you are not breaking any bones.
TerryW: I fall in the dirt or grass or carpet
TerryW: not much cament where I am
TerryW: I have been lucky
Michael17860: soft falls are alot better than hard ones
TerryW: yes, we have 5 acres
TerryW: 2 horses
TerryW: I fell under one of our horses a few days ago
Michael17860: last year I fractured 4 vartebrates.
TerryW: he did a half hoof on my foot
TerryW: then he immediately lifted it
TerryW: my foot is ok
TerryW: Ouch Michael that is not good]
Michael17860: That could have been a bad break.
TerryW: my horse is pretty good, he understands that I have this I think so he does not panic when I fall under him
Michael17860: I have been dx osteoporosis.
TerryW: what is that
fl-don entered the room.
TerryW: Hi Don
fl-don: GM ALL
Michael17860: Pet are amazing.
fl-don: ya missed a good conference t
Michael17860: thin bones from loss of cal.
TerryW: I was walking next to the horse bringing him into the stables when I fell under him
Michael17860: Hi don
fl-don: hi m
TerryW: that is what I hear Don, We will be at the next one
fl-don: did ya hurt yourself t?
fl-don: in vegas
TerryW: No, I am ok don
Gopher entered the room.
fl-don: ya should stay out from under the horses t
Michael17860: don any good news
TerryW: Hi Gopher
fl-don: good news from co ference?
Gopher: Hi everyone!
Michael17860: HI Gopher
fl-don: sounds like research is going ahead full blast. i found out my repeats are 145
TerryW: Oh ok
fl-don: what r dates of vegas?
TerryW: I was going to say
Murf entered the room.
TerryW: Don, I don;t know yet
Murf: Morning all
TerryW: Hi Murf
Michael17860: Hi Murf
craig_h entered the room.
TerryW: Murf may know the Vegas dates
fl-don: they gave us dates in nov, but cant remember
TerryW: Hi Craig
craig_h: good morning all
Murf: GM Terry & Mi
LenJ entered the room.
MikeG entered the room.
TerryW: hi guys
Michael17860: Hi Craig and len and mike
Gopher: Len Your home! When did you get home?
MikeG: wow - look at all the people! Already!!!
craig_h: good to see y'all this morning
Gary_KS entered the room.
TerryW: hi gary
Murf: November 3-5 is SFN in San Diego
MikeG: morning everyone
fl-don: u home yet len?????
LenJ: Hello everyone. I got in Saturday evening to 2 feet of snow. Thankfully my son shoceled me out
Gary_KS: Good morning! It is raining in Kansas this morning.
Murf: Fingers r not working good this morning
MikeG: Its' going to be 90 here today Len.
fl-don: no snow here in fl when mike and i got home
Gopher: 36 degrees in MN
Murf: No snow in Houston either LOL
LenJ: Some 20,000 paople still don't have power
Apache entered the room.
Murf: Just got the grass cut
TerryW: Hi Apache
Apache: Hello everyone
TerryW: Apache do you have KD
Murf: Len can you call in about 1pm CST?
LenJ: My hands are not working well--so I might not type much
Apache: Yes, I am Jerry Brown
TerryW: oh, ok
LenJ: Murph I'll call you
Michael17860: So what is the Good news from the researchers?
Murf: Hey Jerry
Gopher: Hi Apache What's the weather like in AZ
TerryW: murf has the details
Murf: Len Use the toll free number
Apache: A lot dryer than Houston from what I understand. Are you and Murf keeping dry?
LenJ: Murf--If it's just us 2 I can use my cell--minutes FREE
Gopher: Gophers are from MN and Winter Snowbirds,
Murf: Yup but didn't go to work on Monday due to storms. 4 people were killed
Murf: ok Len use my home phone
Apache: It is clear and dry here, Temp in the mid 80s
Murf: The Doctors and Reaserchers said they come to our conference and if they have time they go to SFN. That blew me away!!
Gopher: Roger and I would like to Thank Everyone at the Conference.
Murf: I would like to thank everyone for comming.
TerryW: they like the KD conference better?
Gopher: We left convinced there is hope and inspired by your strength
Gopher: the researchers were great!
Murf: They come to us because they can talk to other drs & reaserchers working on the same issues
TerryW: I hear they found what is gumming up the AR receptor
TerryW: is that correct?
Gopher: yes, the protein in the nuclei
TerryW: I hope they can figure out a way to fix it
Murf: They arre very strong theories
TerryW: Maybe some Draino
fl-don: beer fixes everything
Gopher: Believe there is reason for hope
Murf: The hormone is testosterone (and dihydrotestosterone, DHT) – the disease and the accumulation of the AR in the nucleus is dependent on the presence of hormone – no hormone, no accumulation and no (in all models) no disease.
Apache: Hopefully, the new researcher's work on the skeletal muscles will bring new ideas and possibly a treatement for the muscles.
Murf: Cut & paste from Ed
craig_h: any ideas how far away that is?
Murf: o Another interesting set of results was that there may be some influence by the muscle cells themselves on the progression of the disease. It had generally been thought that the muscle atrophy was due to the loss of the motor neurons; this may a bit too simple. Two lines of evidence indicate that the muscle cells may also be affected independent of the motor neuron cell death. It is not clear how this may influence the disease nor does it necessarily mean that the motor neuron death is not the primary cause of muscle atrophy.
fl-don has left the room.
Murf: Another quote from Ed
TerryW: thaks murf
Gopher: Isn't it wonderful we left being able to talk about KD
Murf: That's the beauty of these conferences
Murf: We learn to accept and live with KD
Murf: I'm glade I have it
Murf: I would have never meet all you fine beautifull people
Apache: I'm glad that I know that I have it.
Murf: Me too Jerry
Gopher: We're glad for the support of KD family
Apache: So am I
Murf: A few drs said they wouldn't miss our conference for the world
Murf: I think we should have it every year
LenJ: The KDA and all the members sure make it easier to deal with. The comeraderie is uplifting and motivational
TerryW: I heard a good saying the other day on TV. A person with a terrible disease was aske by another, Don't you ask yourself why me? why did this happen to me. The prson replied NO I don't ask god why me because I did'nt ask god why me when good things happen to me.
Murf: It's all in how you play the cards that are delt
Gopher: Amen, Murf
MikeG: So true!
Murf: Yup, you can choose to be depressed or you can choose not to be
Murf: After saying that I doo take anti-depressants
Apache: I choose not to be
Murf: Depression is something we need to deal with and not ignore
Murf: Again. I'm glade to have KD cause I would have never meet ya'll
LenJ: M I was depressed when I got to Atlanta--but you guys put ,me back ion track
Murf: The conferences have a way of doing that
Murf: A room full of guys talking through their nose
TerryW: I get depressed most mornings then it goes away after I start doing my chores
Apache: Perhaps we chould consider having the conference in different parts of the country so that more people with KD might be able to attend that otherswise wouldn't because they have difficulty traveling or can' afford it.
Murf: Terry - do your legs still hurt?
TerryW: as long as I can still do things I keep the depression away
TerryW: Yes Murf
Michael17860: I would go for that.
Murf: What do you take?
Murf: Next year in Lost Wages
Murf: Las Vegas
TerryW: Apache, we have had past conferences in San Diego, Chicago, New Orleans, Baltimore
TerryW: next year will be Las Vegas
LenJ: Dr Fischback thinks Las Vegas may attract some Japenese doctors and researchers
TerryW: he may be right
LenJ: Soyy I can't spell or type
TerryW: My mom lives there, I may get her to come
Murf: Terry - what do you take for pain? I need to look at this
TerryW: I take ULTRAM (Tramadol)
Murf: I need to meet her!
TerryW: targets my pain
TerryW: Murf, you gonna hit on my mom LOL
Murf: OK my legs have been killing me for a few weeks now
Apache: As soon as I get a few more pressing things finshed up around here, I will be glad to help with planning next year's conference.
Murf: No thanks //2 //2
TerryW: We will take you up on that Jerry
MikeG: I've got you down on my list, Jerry.
Murf: Jerry - Len & I have started so drop me a line when your ready
Gopher: I bet you wouln't mind taking a few trips to Las Vegas, Apache
Murf: Mike - interest ing trip home !
LenJ: I might have to move back to Vegas just to plan the conference
Murf: We may need someone to check things out. right Len
Gopher: Len, Don't tell J that its only a few hours drive for Apache
LenJ: I'll be there 4-6 weeks Jan/Feb to get away from Buffalo snow and cold
TerryW: 7 hrs from me
Apache: It's only a six hour drive . . . even less if I gofrom my mom's summer plade in Flagstaff
Gopher: Then we can see you next year , Terry
Murf: I think TJ & I will drive again. That was a great trip
TerryW: We are planning on it
Murf: Great Terry
LenJ: I hear Don and Mike had a good ride back
Murf: Thats what I heard too
Apache: I caught a cold on the plane ride home
TerryW: I still have to get my flu shot
TerryW: I missed last weeks free shot at my Kaiser facility
Murf: Me too. We need these every year
Gopher: Have to go do some political work to get Amy Klobachar and Tim Walz to DC
Murf: two weeks before my free one
Apache: I need to get aflu shot too, but it sounds like Arizona is going to be delayed in getting the vacfines again this year
Murf: That will be in 2008
Gopher: Remember those names
MikeG: Sorry - I had a phone call. Yes, Don and I had a very eventful trip back.
Gopher: We're electing them from MN this year. You will hear about them on
Gopher: Election night
Gopher has left the room.
Murf: good luck
Murf: we may want to publish stories about the trips we take for the conferences. Ted & I had fun with the police too.
Murf: all on Friday the 13th
MikeG: yep - not a good day for traveling.
Murf: no I'll send you the story//1
TerryW: The man came down on ya huh
craig_h has left the room.
Murf: The hotel
Murf: Manager over reaction
TerryW: Murf, did you trash another hotel room like a rock star LOL
Murf: //2 no but was accused of passing a bad cc
Michael17860: Need to run. Keep the faith....
TerryW: You should write a letter to upper mgmt
Michael17860 has left the room.
Murf: I did
Gary_KS has left the room.
Murf: Have a read. where is everyone going?
Gary_KS entered the room.
LenJ: Mrrf did you get my request for the board?
Gary_KS: I am back.
Murf: I got a blank message
Murf: Hey Gary what happened
Murf: Try again Len
Gary_KS: I guess it was a server error.
Murf: Terry will you save?
LenJ: What type hotel 1. Strip with all the action 2> near strip 3. old downtown section 4. isolated casino/hotel with 5
LenJ: 5 non gambling
Murf: Thats what we'll look at the go to the board when we have looked at everything including meeting rooms and food
Murf: The conference committee will tell the BOD what hotel we have chosen
Murf: I'll keep them in the loop at monthly meetings
TerryW: only about 5 min left in chat
Apache: Don't forget that we need an adequate number of handicap accessible rooms . . . of course not everyone has to stay at the hotel where the conference is.
Apache: Some people may be comped by other hotels.
Dart! entered the room.
Murf: Ture Jerry and that is a big one for me. There are a lot of things you don't really think about until you do a few of these.
TerryW: Hopefully they stay at the hotel of the conference if possible, It helps us fill our room block requirements
MikeG: Very true!
LenJ: Take care everyone--it's good to be hear from all of you I'll keep in touch good bye
TerryW: Conference planning is a big job
Murf has left the room.
MikeG: Until next time - take care everybody.
TerryW: Ok, I am going to save the chat now
LenJ has left the room.
Dart! has left the room.
TerryW: Goodbye all
Apache: It was good chatting with everyone. ByeEND CHAT