Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  10-21-2006

Topic:  Post conference discussion

Host: Terry Waite

Chat Participants:




TerryW: Hello

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: Cement

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: Yes

Michael17860: HI Gopher

fl-don: sounds like research is going ahead full blast.  i found out my repeats are 145

fl-don: 45

TerryW: 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

Gopher: OOOPs

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

TerryW: welcome

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?

TerryW: cool

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

TerryW: LOL

Murf: have

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

TerryW: Glad?

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

Murf: //2

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

MikeG: YES!

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

Gopher: Good

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

Murf: Burrrr

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

Murf: No

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

Murf: oh

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

TerryW: ticket?

MikeG: yep - not a good day for traveling.

TerryW: hmmmm

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?

TerryW: yes

Murf: ok

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

LenJ: OK

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. Bye