| Kennedy's Disease Chat Transcript 3-17-2007 Topics: Topic: Open Forum Host: Ed Meyertholen | ||||
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Chat Participants: emeyerthTerryW chumar DarwynP Sammy MICH Gary_KS Craig_h Murf Robazbob butch Dart! billeric KellyC BEGIN CHAT Murf: Morning chumar: Morning Murf Murf: Morning Chuck DarwynP: For me not helping at all. DarwynP: But I could be getting the placebe Murf: I think I got the sugar to but still have a year to go DarwynP: placebo chumar: Yea DarwynP: Hi murf Murf: I getting fatter!!?? Sammy entered the room. Murf: Hey Darwyn DarwynP: Saskatoon sounds similar but, you do get the real drug. chumar: Well not to fat i hope Murf: Morning Sammy chumar: You know how i worry DarwynP: so that will be interesting chumar: Morning Sam Murf: I just started that nutrisystem diet chumar: kool Sammy: morning folks DarwynP: Do you put in the the Saskatoon study chuck DarwynP: morning Murf: WoW Canadians every where DarwynP: D id? Butch entered the room. Murf: Morning Ron chumar: Yes my blood work is done ,no reply yet.you? DarwynP: Did? chumar: Morn Ron Butch: Good morning all. It is snowy and cold in Penna. DarwynP: I'm thinking I'll just stick to the one for now. chumar: Yes Sammy: It's snowing again in Kanada, just when we thought it was spring - why not stay indoors and chat?! Gary_KS entered the room. Murf: Sunny and cool in Houston chumar: Hi Gary Murf: cool 55 Gary_KS: Good morning. Gary Uchiyama joined from KC. chumar: Murf i am going to come and visit next winter Murf: morning Gary Murf: ok Chuck chumar: too cold here Murf: You are all welcome y'all chumar: Take in some football Murf: I remember chumar: do you have season tickets Murf? chumar: lol Murf: I can't afford them chumar: well i will find alot of gold and send you the money Butch: Chumar--How much snow do you have on the ground? robazbob entered the room. Murf: and the company won't choff up chumar: 6 feet and rising chumar: Butch robazbob: good morning all and happy st. patty's day Butch: WOW!! DarwynP: morning rob chumar: yea thats enough Butch Murf: top of the mornin chumar: Morn Roba emeyerth entered the room. emeyerth: good morning everyone chumar: Morn Eme Murf: Morning Ed Butch: We had 70 degree weather just 3 days ago. Now we have the snow and cold. Just not good for us KD'ers. Murf: Ron - you need to get chains put on your chairs LOL robazbob: 95 in arizona yesterday much better for us kd'ers chumar: no im going west as soon as it warms up there DarwynP: Chuck does Saskatoon cover your expenses for their Dustateride study. chumar: They said no charge to me DarwynP: That's good. chumar: Yes i'm excited Murf: Ed - you fall asleep? chumar: lol Murf: must be out running or something LOL emeyerth: nope, I am just a quiet guy ;-) chumar: Good one Murf: //2 we know you emeyerth: interestingly, my professinal persona is very different from what I am really like chumar: //2 Murf: whats the topic? billeric entered the room. Murf: Hey bill robazbob: good morning bill emeyerth: it is open topic, although I am happy to answern science questoins Dart! entered the room. chumar: Morn Bill Butch: What has everyone been doing to help your KD situation? Has your condition gotten worse or are you maintaining? This is a question for whoever has information to share. DarwynP: I booked vaction for the conference, now just need to wait and see if I can find reasonable air fare. Over 1400 for 2 right now. billeric: Good Mornin'guys Murf: Darwyn - you'll be able to find cheaper flights than that Dart!: Good morning All!! DarwynP: Butch, Ive have gotten considerably weaker this winter. Murf: Morning Dart chumar: For me i feel good, like in remmition Murf: I have a therapist comming to the house today to evaluate it again for a chair craig_h entered the room. Butch: I know that I've gotten weaker this winter but, I'm hoping it is only the cold weather. Murf: Morning Craig craig_h: good morning chumar: Morn Craaig emeyerth: morning craig chumar: Craig Murf: I have deteriorated over the last year as well Murf: Not out of my chair very much at all any more Dart!: Murf, do you not HAVE a chair DarwynP: I especially notice my trunk muscles. I have are hard time staying upright Butch: Murf--what do you mean evaluate it for a chair. Do you mean more ramps, etc. Murf: I have two and one more on order billeric: I feel pretty much that I am maintaining. I don't see much change. Stairs are the thing that lets you know how your doing. Murf: BCBS needs an evaluation every 5 years and they pay for a chair chumar: What are you doing to stay that way Bill? Murf: Ron - you remember my big chair? emeyerth: Murf, does that mean a new chair every 5 years? Butch: Yes. Murf: Yes I get a new chair every 5 years DarwynP: I need arm rest to help keep me verticle while sitting Dart!: Approximately what does a good chair cost, and the suggested brand, please? Murf: Well now I just bought a Z-chair Murf: too small emeyerth: As a side note, my daughter is in Germany and just had knee surgery billeric: No new medication. I try to stay active but so far I haven't done any therapy Murf: so I need to get one in the middle emeyerth: She has been amazed at how difficult it is to get around there Butch: What is a Z-chair, Murf. Sammy: Does anyone know if the Saskatoon study has started? Saw it mentioned earlier. Benefits with dutasteride or too early to tell? emeyerth: no ADA there, apparently Murf: A very samll chair (cheap $3000 USD) chumar: Sam i have done blood tests so far thats it they need to get back to me to see if i qualify Murf: drive wheels are 8" Murf: good for the house but not much else Sammy: thanks Chumar chumar: I will keep every one informed Dart!: Would 8" wheels handle any terraine, or are there other qualities to consider? Murf: Pride make it and you can find the details on the pride site in the manuals section craig_h has left the room. chumar: The study is with Dutaride and exercise Murf: Dart - its not powered well so will sometimes stall out on a 1/2" carpet Butch: Ed--do you have any new news for us on KD research? jameson411 entered the room. Murf: front wheels are5" chumar: Morn Jame jameson411: greetings all Sammy: What type of exercise are they suggesting Chumar? Murf: Drive wheels are behind you so it takes getting used to Butch: Hi Jame emeyerth: There were a couple of studies (in the past few months) that deal with factors that lead to the inclusions in KD cells emeyerth: They do not deal directly with treatments but with info on the reason cells may die chumar: Hands, walking, arms Dart!: I am being coerced into thinking 'chair', but have the idea that I would like one that will handle any terraine, and go 50mph. emeyerth has left the room. Butch: What if any, is being done with stem cell ressearch for KD? DarwynP: The Society for Manitoban's with Disabilities has ordered a chair for me also. It will have a regular pan seat with a $700 cushion, power tilting and a swing away remote with desk arms. Murf: LOL then this one is not for you Dart!: AND be agile enough for in the house! Butch: Dart--dream on!! DarwynP: They almost have them Dart execpt the speed part! chumar: //23 emeyerth entered the room. DarwynP: Good for hunting and everything emeyerth: sorry, I got kicked off Dart!: Well, I suppose that 25 mph would do,and capable of dragging a small trailer. Butch: Darwin--most of my hunting is looking in the refridgerator for more food. LOL DarwynP: lol chumar: Lol DarwynP: same here now jameson411: i'm gonna hold out for the Hoverchair... DarwynP: lol emeyerth: The papers were involved in the cause/prevention of the clumping of proteins in cells with KD - something that is beleived to cause the cell death. Butch: Ed--I asked when you were kicked off if you knew any further studies being done on stem cell research? jameson411 has left the room. chumar: Any Body on Magnesium? emeyerth: not with regard to kd emeyerth: there was a report with using stem cells with eye diseases Butch: Thanks--Ed. Sammy: Emeyerth - do you know which groups were doing the studies? Sounds interesting. On the KDA research links? emeyerth: ONe was from the Diamond lab (he was collaborating with Diane MErry, the other report was actually in Huntingtons, but should be applicable to KD Butch: Murf and Ed--How do you fel about BOD next Sat? Regular time. Murf: Dart - you need to look up OmegaTrac emeyerth: that is fine with me Murf: They make hunting wheelchairs Murf: Go any where and fast emeyerth: I have put together a short reprot for the KDA asite that describes these papers, I just need to finish it so it sounds like it makes sense ;-=) Murf: But a little expencive DarwynP: not sure about speed but one is mid wheel style the other bigger tires like a quad emeyerth: Murf, there is (was) a way to hunt over the internet Murf: These guys advertive hunting trips Murf: for the disabled DarwynP: just chairs Murf: advertise Butch: I only can hope that all the muscular diseases share the results of research which might help Kennedy's or ALS or any other MD diseases. Murf: $23,000 USD kellyC_ entered the room. Murf: hey Kelly emeyerth: murf, http://www.engadget.com/2004/11/17/internet-hunting-coming-to-texas/ chumar: Morn Saskatoon Dart!: I have a model 'T' pocketbook / Cadillac tastes, and I suppose that those fast chairs might have a problem with cornering / staying upright. Murf: Man I haven't seen this many Canadians for 12 years kellyC_: good moring DarwynP: the mid wheel with tilt,leg lift.and chair lift 25,000 Sammy: Thanks Emeyerth - look forward to see it Butch: $23,000!!!!! Wow!!! I'd have to hunt for the money to go hunting....LOL DarwynP: morning kelly Murf: Actually this is a front (12") wheel drive kellyC_: hi Darwyn how are you doing? great I hope? Murf: Its too big for the house LOL DarwynP: I'd say okay. lol Dart!: Yes, Murf, time to get realistic! kellyC_: that's good to hear!! Butch: Murf--buy the chair thewn get a bigger house....LOL Murf: You know how I work for!! Murf: LOL Murf: who robazbob has left the room. DarwynP: seems the boys are getting dumpped today for some reason Murf: Are they on dial up? chumar: Ya i did before i started chat chumar: dumped Murf: could be the reason Butch: I always thought they had caller ID..That was why I got kicked off so often. kellyC_: what time does the chat kellyC_: or did it start @ 8-30 DarwynP: your time yes Murf: I've got a wireless router in the house and sometimes get kicked off when the kids get home from school Murf: 3:30 - 4 every day DarwynP: Kelly are you doing the dustasteride study in Saskatoon billeric: I still have dial-up. Darn it! Murf: I spend so much time here I need a full time connection kellyC_: no I'am not Darwyn.. but I know a few pple in there. plus dr. Hader i know him Butch has left the room. Butch entered the room. DarwynP: i see Murf: welcome back Ron ...dial up? chumar: LOL Butch: See what happens--It is the caller ID. kellyC_: chumar? would tyhat be chuck? Murf: y'all coming to the conference this year? chumar: Kelly Yes kellyC_: hey hi there... glad to see u in here lol Asome... chumar: Thanks you too chumar: How is your brother doing? kellyC_: he's ok chumar! Butch: Wish there was a way to retrive the data lost when getting kicked off the chat. Bessides going to the KD site after the chat is posted. kellyC_: I'am living in prince albert now so i dont see him much Murf: I got it Ron chumar: Oh how is the wife and kids? Murf: I'll send you a copy today Butch: Murf--Great. kellyC_: HMMMMM.... new wife no kids LOL chumar: oh lol Murf: yet kellyC_: lol MICH entered the room. Sammy: Gotta head out here folks - thanks for sharing some things - see in a month Murf: Morning Mich billeric: Mornin' Eric chumar: Ok Sammy has left the room. kellyC_: Actually I have 2 boys 22 and 17 there great kid's Murf: Sammy - take care MICH: Oops...I over slept...good morning chumar: I thought they were younger Kelly DarwynP: morning mich kellyC_: I didin't sleep at all last nite! chumar: Morn Mich kellyC_: nope chumar... mt boys are grown and on there own now Murf: Kelly - you got a CPAP? Butch: Kelly--sounds like the title for a good song. DarwynP: I had to get up 2 hrs ago back couldn't take it antmore kellyC_: no not yet i was in the sleep clinic billeric: You need to be in Phoenix today Eric. Should be 100 degrees by this afternoon. Murf: I slrrp better when I use mine Murf: sleep MICH: I was so shocked to here about Apache last week...did we get anymore details? kellyC_: I hope pat is ok there BILL. I havent heard from him lately Murf: We have a memorial page to him Murf: and you all can sign his guest book chumar: Ok billeric: Saw him yesterday Kelly. He is the same. kellyC_: apache? what happened ti him? MICH: Murf, I forgot...how do you get to the memorial page? kellyC_: ok thanks bill Murf: He passed away two weeks ago Gary_KS has left the room. Murf: I think Terry has a link on the home page kellyC_: gosh how old was he? was it kd trelated? Gary_KS entered the room. Butch: His sister sent a very nice note about Jerry (Apache) Brown. Was so glad that he found the KDA. Murf: Its under discussion/support left side of the page Murf: 51 kellyC_: oh my gosh..!!! young.....! Murf: I talked to him the day before and he sounded fine Murf: Undiagnosed heart problem (not KD related) kellyC_: oh ok.. thanks Murf Butch: Murf--wasn't it his heart.....Don't forget--The heart is a muscle too...so keep it exercised. Murf: we do need some exercise DarwynP: well, i'm off till next time take care all!! Murf: Take care Darwyn Butch: So long Darwyn--stay healthy. DarwynP has left the room. chumar: Watching a good hockey game does it for me Murf: LOL Murf: I hear ya chumar: I am a Ranger fan as it looks bad for Canadian teams this year Butch: Thinking about sex--You notice I said THINKING.. LOL kellyC_: ow Butch,, Behave LOL........! Murf: what ie "sex"? Murf: LOL chumar: That helps too Butch: Don't tell me even your memory is going? Murf: Chuck the money is not there anymore unfortunately Murf: what memory? Murf: LOL chumar: LOL chumar: You will have to come west young man Murf: humor is our best medicine Butch: The memory is the 2nd thing to go. chumar: Yes humour Murf: LOL Murf: is that French? MICH: Happy March Madness is here, my two homes for a quarter of a century each are still in the run, Mich State and Oregon chumar: Kool Murf: what color is it? chumar: I place sports select chumar: play chumar: Gamble Murf: Be carefull in Vegas Murf: we'll offer lessons chumar: Lol i have been there before on the nickel machine and learned my lesson lol Murf: Those things ARE bandits billeric: Got to go guys. Do my chores before the heat hits. Record heat today. Al Gore had it right! Bye chumar: Bye billeric has left the room. Murf: No Gore jokes? Butch: Laughter--always helps!!! Use it regularly. Bye Bill..stay healthy. chumar: Just Murf ones !!! Murf: yupLOL kellyC_: Well got to go here to Folk's stay healthy see ya next chat! Murf: Stay warm Kelly chumar: Youtoo Butch: Murf--How is TJ? And the Weaser? kellyC_: thanks all bye for now kellyC_ has left the room. Murf: TJ was getting on ...don't know Butch: So long Kelly. Murf: Susan went through surgery again yesterday for the 8th time Butch: She certainly needs our prayers. Murf: It's taking a toll on the family Dart!: Susan? Murf: Yes she does and still has her leg Butch: Susan is TJ's niece. Murf: One of our KDers daughter had an accident Dart!: 8 times to the plate - not nice! Murf: twice since the plate Murf: 2 x infection so we need to say a prayer for her Butch: Well guys--Must go for now. Hope you all stay healthy till next we chat. Good-bye. Butch has left the room. chumar: You too Butch Murf: See ya Ron - emeyerth: I need to go as well, till next time Murf: wow emeyerth has left the room. Dart!: Keeping one's spirits up under those circumstances is a big and hard job! chumar: Yes take care Ed Murf: just us hardened Kanucs chumar: Ya Murf: sorry Gay Murf: gary Murf: Gary Murf: Gary chumar: lol Murf: Dam Dart!: Murf - you are a Canuck? Murf: I hate my fingers Murf: yup Dart!: I call them ' Dart!: Rogue fingers' Murf: lately their not working so I have to slow down the typing Dart!: Any slower and I am in reverse! Murf: Dart I moved out of Canada (Alberta) in 1996 Dart!: To warmer climes, Murf? MICH: You'all have a good week, catch you the middle of next month, happy green day Murf: went to Holland for 4 years then to Houston Dart!: Our type doesn't seem to thrive in our cold. Murf: Mich have a good week chumar: Going to go Guys Take Care all it was a great chatt. Murf: I like Houston better than Holland Murf: Its warmer Murf: See ya Chuck chumar has left the room. MICH has left the room. Murf: I'll save the chat now
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