Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript  10-20-2007

Topic:  Open Topic

Host: Bruce Gaughran


BEGIN CHAT

Bruce: Morning Eric

Bruce: How are you today?

MICH: Pretty good, how's the weather in Georgia?

Bruce: Fall finally arrived yesterday and it is beautiful.

Bruce: I just returned from walking my dog down by the lake (actually, he walks and I ride the golf cart).

MICH: I want to thank you again for helping me a few years ago deal with delaying doing Medicare prescriptions since I have my wifes insurance.  I forgot what kind of dog do you have?

Bruce: How is work going?  I think it would be interesting to have job at a planatarium.

MICH: I've been working there for about 5 years now just in the morning... it becomes more and more as a physical challenge as does typing this info.

Bruce: My dog's name is Fred.  He is a beagle.  He showed up on our porch four years ago and was about dead.

MikeG entered the room.

Bruce: Morning Mike

MikeG: Hi Bruce

Bruce: How are you today?

MikeG: fair - we had a MDA fundraiser we attended last night - too much wine!

MICH: How are things at Tropicana?

MikeG: it was a art auction - we got a nice piece for a goos price.

Bruce: Are you into art, or just helping the cause?

MikeG: Tropicana? I haven't contracted there in quite some time.  They're probably doing ok.

MICH: Mike and Bruce, being a state away from each other, have you had a chance to meet?

MikeG: just helping...

Bruce: Did Terry send out a notice of the chat?  I don't remember seeing one.

norminstormin entered the room.

MikeG: I thought he did - I'll check.

Bruce: Morning Normin

norminstormin: hello

Bruce: Are you all set for winter?

norminstormin: getting ready

Bruce: It has been a few years since I was in Ontario.  We used to have a paper mill up there.

MikeG: actuall, I don't see the reminder for this one - Oct 6th is the last I see...

MICH: Normin... are you very far from Detroit?

norminstormin: where in ontario

Bruce: Everything was sold last year to Domtar, however including the mill.

Ed_M entered the room.

Bruce: I just blanked.  I had Prince Albert (another mill) on my mind and can't come up with the name.

Bruce: Morning, Ed

Ed_M: Good Morning, everyone

MikeG: Hi Ed

norminstormin: north of minnesota

Bruce: I used to fish the Lake of the Woods region when I was young.  We would canoe in for a week to ten days.  A great place ... I miss those days.

Bruce: Walleyes and Northerns for breakfast - lunch - and dinner almost every day.  WOW!  Was that living.

norminstormin: thats nice i used to do that when i was younger too

MICH: Normin... I'm bad at geography... are you far from Georgian Bay?

norminstormin: north of thunder bay

Bruce: People in the south don't know about Walleyes.  I tell them they are missing a great game and eating fish.

norminstormin: yes they are missing out

MikeG: with my hands I couldn't even get a hook out now...

Bruce: Well, what does someone want to chat about today?

norminstormin: mine are getting  like that now

Bruce: Hands ... yes, those good ole hands that don't work well anytime, but really don't work when it is cold outside.

MikeG: that's why I'm so far south...

Bruce: Any temperature below 50 has them not performing well ... below 32 they are clubs that are not even functional.

norminstormin: fingers lock up when i,m cold

MikeG: upper 80s today.

Bruce: I hate going to the bathroom after just coming inside on a cold day.  The hands do not do what they are supposed to do.

MikeG: 10-4 on that!!!

MICH: Mike... you lucky dog at 80... if it gets super hot... does it affect you the same way as cold

Bruce: Trying to write is difficult enough, but when the hands are cold I can hardly hold a pen let alone write anything legable.

MikeG: one time I was sailing on the Frisco bay and had to use the john... barely got my fingers warm in enough time to unzip...

Bruce: I know that feeling ...

MikeG: no - hot is fine with me.  The hotter, the better.

Bruce: Panic in the streets or pants anyway

MikeG: yep!

Bruce: Ed, do you have another run scheduled soon?

MikeG: same here - cursive is impossible now.

Bruce: My neighbor has been preparing all this month for the New York Marathon.  He is a running machine.

TerryW entered the room.

Ed_M: Bruce, the first race is tomorrow

Bruce: Morning Terry

TerryW: Hello all

MikeG: hi Terry.

TerryW: Sorry I am late

Bruce: What distance?

MikeG: did you send out a chat notice?

MICH: Terry, is it cold in Cal today?

Ed_M: It is the shortest one - just 10K - I am not sure if Sean will be running, as he is injured

TerryW: I forgot,  Dirst time in 6 years LOL

Bruce: What happened to Sean?

TerryW: first

MikeG: //1

Ed_M: He has some ligament injury, pretty typical of bikers and runners

TerryW: Ouch, hope he gets better

Bruce: Yes, those 'hogs' can be tough on a guy.

Ed_M: I have not heard from him in a couple weeks so I do not know how he is doing.

fl-don entered the room.

Bruce: Morning Don

Ed_M: Essentially, it is an overuse injury

MikeG: morning Don

TerryW: Hi Don

fl-don: hi all, trouble getting on again?????

MikeG: you're lucky you wern't drinking wine last night...

Bruce: My neighbor that runs marathons several times a year always seems to have some type of injury.

TerryW: I had a strange error this morning also loggin in,  Ut told me the first time that my account was not active

Ed_M: Marathons are tough on the legs

TerryW: I tried again and I got in

MikeG: yep - running is really hard on the joints.

fl-don: got in 2nd time

TerryW: me 2

Bruce: It has been a long time since I had any sports injury.  I actually miss those days.

fl-don: looking 4ward 2 conference

TerryW: I fot my 2 pups back last night from the Vet, I had the works done on them, Spayed, Neutered, dew claws removed and on small tumor removed, they are doing good

Bruce: Yes, the conference is two weeks away.

TerryW: got

Bruce: Glad to hear it Terry.  Have they calmed down any?

TerryW: yes a bit

Bruce: Good

TerryW: they are now 50lbs

Bruce: Don, are you going in early or staying late this year?

fl-don: any news on the research front?

MikeG: what kind of temps can we expect in Vegas?

TerryW: We will be arriving sometime Mon afternoon

fl-don: goint to vegas on nov 2 (fri) and staying a week

Bruce: Nothing new from my side.  Ed has reviewed a couple of research projects that are taking place by post-docs.

fl-don: temp in poker room is 72 with no rain

TerryW: It starts to get cool in Nov

MikeG: 70s

TerryW: windy possibly

Ed_M: Not really, although there was an announcement that a British group was given the go ahead on a new treatment for Duchene's (sp) Muscular Dystrophy

Bruce: Don, what kind of poker do you play?  Hold-em?

fl-don: hold em

TerryW: <-----not a big gambler

TerryW: Show me the buffet :)

MikeG: craps for me!

TerryW: Murray broke his foot again I hear

Bruce: I enjoy watching the Hold-em tournaments on TV.  The main event is one of my favorites.

fl-don: staying out on the strip and taking the double decker buses to downtown

MikeG: how'd he do that?

TerryW: he fell and also hurt fom vertebrea

Bruce: Ouch!  How did that happen?

MikeG: swimming too hard in his endless pool???

TerryW: slipped I think

Bruce: Bummer!

fl-don: i use a chair to prevent bone breaks

MikeG: I've been real lucky here lately - no falls at all.

MikeG: knock on wood!

norminstormin: this past thursday too my knee buckled and i fell

Bruce: Murray and I seem to hold the record for injuries the last few of years.  FOruntately, I haven't had a spill in a long time now.

TerryW: Within the last week I have fallen about 20 times, no breaks yet

TerryW: on grass and dirt & gravel

TerryW: no cement

TerryW: been busy

MICH: The U here in Utah has a doctor who just received a Noble Prize for being one of the 1st to do knock outs in DNA of mice to study disease... their lab is planning on researching MS to alzheimers... I trying to get my ALS/MND doctor to test my blood for number of neurons in the spinal cord... and maybe I show now try for other studies?

TerryW: done now

Bruce: I am a little concerned after my last break.  I am very cautious and spend more time in the chair.  I still exercise every day and believe that has really helped strengthen my quads.

TerryW: All I have left is to split firewood but I am going to hire the neighbor kid to hand me the logs and I put them on the splitter and make the kindling

Murf entered the room.

Bruce: Mornig Murray

Murf: morning all

MikeG: Hi Murf

TerryW: Hi murray

Ed_M: Morning, Murray

Bruce: I heard you had another fall.  What happened?

MikeG: how's the foot?

Murf: I'd forget my head lately if it wasn't screwed on

Murf: foot is ok the back hurts

Bruce: Where did you fall?

Murf: I fell in the bathroom again

Murf: pulled a bruce but got lucky

TerryW: Murray your wer'nt apping your fett in the stall were ya ? LOL

TerryW: tapping

Murf: I noe have the " I fell and I can't get up" button

Bruce: Good to hear.  I hate the bathroom ... bad memories.

TerryW: kidding

Murf: I hear that

TerryW: one of those devices are food to have

TerryW: good

TerryW: my typing is terrible this morning

Bruce: Ever since I bought the shower stool, my life has been a lot better.

Murf: one for the wrist and one for the neck

fl-don: are they meeting for dinner the day be4 conference this year?

Bruce: Yup

fl-don: where and when?

Murf: Don - yes we havew tickets to the Tournament of Kings

Bruce: Murray has arranged a fun evening.

Murf: 8:30

TerryW: Don, did you get our e-mail announcment

fl-don: probably, but dont bother to read stuff

TerryW: Excalibur Knights dinner

fl-don: mon?

TerryW: yes

Murf: we'll leave the hotel about 7:30 or so with the first load LOL

TerryW: let murray know if you want to attend

norminstormin has left the room.

fl-don: k

TerryW: he has the tickets

Murf: I bought extra tickets so will have some extra

Ed_M: Guys , I need to go - till next time.

Ed_M has left the room.

Murf: Is Norman ok

Murf: where is everyone going?

Bruce: He was fine this morning.  He said he fell this week, but didn't hurt anything important.

Murf: was it something i said?

TerryW: I need to take a shower to be presentable for the board meeting

Murf: good

Murf: you need one terry LOL

Bruce: We didn't hgave much of a turn-out today.

TerryW: I forgot to send the reminder out

TerryW: :(

Murf: Just be for the conference attendance goes down

TerryW: was so busy here

Murf: I heard that Terry

TerryW: I am taking a Mulligan on that

MikeG: the t-shirt thing took up a lot of your time too.

Murf: I finally got the dehumidifiers out of the house

MikeG: thanks for helping.

Murf: Flooded on Monday night

TerryW: you are welcome

Bruce: Mike, the t'shirt idea seems to be coming together.  Thanks for running with it.

fl-don: i cant find any e-mail re dinner on monday?

TerryW: you guys did most of the work, thanks

fl-don: could anyone resend?

MikeG: it was my sister that did it all.

Murf: only three rooms but cut the house in have for a week

TerryW: Don I will send you the announcment

Murf: I'll vote Ya on the T shirts GOOD JOB Mike

fl-don: ty terry

Bruce: I believe one of the topics we should have on a future chat should be something about dealing with winter.

Murf: Don don't buy tickets online ... we got them cheaper

fl-don: k

MikeG: yes - move south!

Bruce: I thought I had

MICH: Do the taxi-vans for wheelchairs in Vegas also usually have lifts that could even lift a 350 pound power chair?

Murf: Ya move south!! like the birds

fl-don: is this one of the eat with your hands places?

fl-don: taxi's in vegas have ramps

Murf: Mick all cab co in Vegas have accessable taxis

fl-don: minivans

Murf: Don - yes!!

Murf: and cheer for your knight!

fl-don: had rrouble eating with hands here in or lando

fl-don: more food on floor then in belly

Bruce: You can ask for a fork or spoon

fl-don: k

Murf: yes ask for a fork

Bruce: Or a straw

fl-don: gotcha

Murf: or a shovel

Murf: My daughter says she is comming to look after me. I can't wait

TerryW: Just sent it to you Don

fl-don: ty

TerryW: yw

fl-don: ill buy u a beer in vegas terry

Bruce: It looks like we will have a good turnout again this year at the conference.  Nice job Murray.  And, thanks to the rest of the planning team for their help.

TerryW: ty

Murf: thanks to the committee

MikeG: yes - thank you!  You guys did great!

TerryW: I am going to go shower & eat before the meeting.  See youall later

MikeG: cya

TerryW has left the room.

fl-don: take care t

Bruce: It is a lot of work and requires constant attention.

Murf: me too see you guys in Vegas

Bruce: Take care

fl-don: bye m

Murf has left the room.

Bruce: We are getting down there pretty quick.  It just shows we do need a good topic to keep everyone's attention.

fl-don: we will b together in 2 weeks

Bruce: Eric, you have been extra quiet today.  What is happening up in Utah?

MICH: Being Bruce and Mike and Don live in the South... do you guys ever get together inf Fla or Ga?

MikeG: Bruce, have you heard anything about stem cell treatment in Costa Rica?

fl-don: mike & i get together often.  only live 1 mile apart

Bruce: We have asked for one year updates from the two doctors we gave grants to this last year.  The initial reports sound pretty promising.

Bruce: No, Mike.

MikeG: Don & I were together at a MDA fundraiser last night.

MikeG: we live in he same community.

fl-don: mike & i drink beer together.  good medicine

Bruce: Mike and I chat via emails and occasionally on the phone, but we are ten hours apart.

MikeG: used to be 3 of us but John Mengel passed away in 2004.

fl-don: miss john

MikeG: me2

Bruce: John is someone that keeps coming up.  I miss that guy.

MikeG: everyone does!

Bruce: He had a great attitude.

fl-don: john did alot for the community re: computers

MikeG: yep!

MikeG: very positive!

fl-don: good friend 2

Bruce: Eric, do you know of anyone in your area with KD?

fl-don: gotta go guys, cya in 2 weeks

fl-don: bye

Bruce: Take care don

MICH: I'm the sole KD person in Utah it seems... but see a person in Arizona when I go down there and a KDer from Conneticut stopped by on his way to Yellowstone this last summer (Bill & Jameson)

fl-don has left the room.

MikeG: cya Don

Bruce: That was nice

Bruce: We have developed a good community of friends throughout the northern hemisphere and some from around the world.

MICH: We'll you guys have a good week... and if youre ever in Salt Lake or Phoenix let me know

Bruce: Take care

END CHAT