| Kennedy's Disease Chat Transcript 10-21-2006 Topics: Topic: Post conference discussion Host: Terry Waite | ||||
|
Chat Participants: TerryWMichael17860 fl-don Gopher Gary_KS craig_h Murf LenJ Apache MikeG BEGIN CHAT
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
END CHAT |
||||