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Kennedy's Disease Chat Transcript 03-17-2007
Topic: Open Forum
Host: Ed Meyertholen
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: 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
Sammy: morning folks
DarwynP: Do you put in the the Saskatoon study chuck
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?
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.
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?
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
robazbob: good morning all and happy st. patty's day
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?
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
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
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?
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!
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: same here now
jameson411: i'm gonna hold out for the Hoverchair...
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
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
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!!
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
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?
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
kellyC_: HMMMMM.... new wife no kids LOL
chumar: oh 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
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
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
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
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: 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"?
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?
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: 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
Murf: what color is it?
chumar: I place sports select
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
billeric has left the room.
Murf: No Gore jokes?
Butch: Laughter--always helps!!! Use it regularly. Bye Bill..stay healthy.
chumar: Just Murf ones !!!
kellyC_: Well got to go here to Folk's stay healthy see ya next chat!
Murf: Stay warm Kelly
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
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
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
Murf: sorry Gay
Dart!: Murf - you are a Canuck?
Murf: I hate my fingers
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 nowEND CHAT