Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  03-17-2007

Topic: Open Forum

Host: Ed Meyertholen

Chat Participants:



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

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,

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 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 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