Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  12-01-2007

Topic:  Open Forum

Host: Terry Waite


BEGIN CHAT

 

TerryW: Hello

Murf: Morning Terry

TerryW: Trying to warm up here

TerryW: 31

Murf: TJ is here to do my landscaping

Murf: 65 here

TerryW: I have one of those Parabolic heat dishes next to me. works great

TerryW: tJ doing?

TerryW: hope hes supervising

Murf: pointing

TerryW: good

Murf: he has two0 crews here to do it all today

TerryW: Is that what he does

MICH entered the room.

TerryW: Hi Mich

Murf: Him & Billy own a landscaping company

Murf: Hi Mich

TerryW: oh, ok

MICH: Good Morning Murf and Terry

TerryW: what's going on Mich

Murf: hows the weather in Utah?

MICH: We got a late winter in Utah...SNOW ON THE GROUND THIS MORNING

TerryW: Mich click on mky name and send me your e-mail.  Some else in UT want to get in contact with you. I have an e-mail to forward to you

Murf: yuck

TerryW: double click on my name

Murf: right click then click private message

TerryW: ty, sending now

MICH: Terry... I;ve never met anyone in Utah with KD

TerryW: you can now

Murf: cool

TerryW: 4 of them

Murf: a party!!

MICH: Terry... super... I did meet Bill when in Arizona and Jameson when he came here to see Yellowstone

TerryW: Now you will have 4 more to meet

MICH: Wow... four ... a family of four?

TerryW: yep

TerryW: did you get the e-mail

Murf: It's a wonderful life ... oops wrong movie

MICH: Haven't gone off and on to my email yet?

TerryW: the others should be arriving any minute

Murf: Happy today because my project is finally finished when TJ gets threw

TerryW: cool murf

TerryW: I have been shopping thru the KDA site on Amazon a lot

Murf: Final bill have to be cleaned up too that will not be so much fun

Murf: Me too Terry I just bought Jim Cramers new book

TerryW: Also buying PetMeds thru the KDA site

Murf: I just sent out 25 letters to my neighbors too

Murf: with addressed stamped envelops

DarwynP entered the room.

TerryW: Hey Darwyn, how have you been?

DarwynP: hi all

Murf: Hey Darwyn, made it home ok?

TerryW: glad you could make it, been thinking about you

DarwynP: Okay since Vegas

TerryW: cool

Murf: Great, it was good to see you

DarwynP: I had a little trouble on the flight home but good since

TerryW: I hope you had a good time at the conference

DarwynP: Enjoyeds being there

Murf: Who doesn't have trouble flying?

TerryW: I can fly only a short distance then my wings give out

Murf: Was it with the airline?

TerryW: LOL

DarwynP: lol

Murf: LOL

JACK entered the room.

TerryW: Hi Jack

Murf: Hi Jack

TerryW: I won't say that at an airport

TerryW: LOL

DarwynP: No, my breathing again. Had to get oxygen.

JACK: HI TERRY

TerryW: Sorry Darwyn

JACK: HOPE NOT

Murf: They do not change the air anymore like they should

norminstormin entered the room.

Murf: Saves on fuel

TerryW: Darwyn, does the Oxygen help?

Gary_KS entered the room.

TerryW: hi everyone

Murf: Morning Norman - Gary

DarwynP: I'm not sure but just got really lite headed

norminstormin: good morning

DarwynP: Haven't needed O2 since

Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.

Murf: Norman - how is the great white North? White yet?

Murf: How cold is Winterpeg?

JACK: TERRY THE CONFERANCE WENT WELL

DarwynP: Hi -20 celcius

TerryW: yes

norminstormin: lotsa snow

DarwynP: about 3 or 4 inches

Murf: aaaaaaaaaaaaaaahhhhhhhhhhhhhhhhh!

TerryW: snow  grrrrrrr......

Murf: I don't know how you guys do it anymore

DarwynP: I agree terry

TerryW: that makes my feet numb just thinking about it

norminstormin: had an accident last week i broke my foot again

DarwynP: ouch!!

JACK: THAT HURTS

Murf: no You ok

TerryW: ouch, nmurray knows that well

MICH: Darwyn...Utah has about 3-4 inches too and still falling

Murf: I broke mine enough

DarwynP: Wow

JACK: I FALL BUT HAVE NOT BROKEN ANYTHING YET

Murf: about 5 times

TerryW: Horse stpeeped on my foot again this week

norminstormin: twice now in the same spot

TerryW: good thing it was the baby

TerryW: 300 lbs only

TerryW: bruised bone only

DarwynP: Snow is suppose to come up from ND today

Murf: TJ said Hi Y'all

MICH: Terry... I have to be careful with my powerchair... its 325 pounds

TerryW: Gary, when are you going to come to a JKDA conference

mjo5712 entered the room.

TerryW: fingers

DarwynP: Hi

TerryW: hi Mjo

Murf: Hi Mjo

mjo5712: hello everybody

DarwynP: Terry did you stomp him back

TerryW: So whats been going on Jack?

JACK: JUST WORK

JACK: WENT TO THE NIH IN SEPTEMBER

TerryW: when do you go back

Gary_KS: Terry, what is JKDA conference?

JACK: MARCH 5

TerryW: Darwyn the baby horse also tried to kick me with his front legg so I kicked him back

TerryW: He has not tried since

TerryW: it was not a herd kick

TerryW: hard

DarwynP: See it works! lol11

DarwynP: lol!!

TerryW: Gary you know about our KDA conferences right?

JACK: HORSE ABUSE LOL

MICH: MJO... I bet your Tampa is alot warmer than the rest of our locations

Rich entered the room.

TerryW: Baby horse stallions will try to dominate you if they can

TerryW: you have to keep them in line

Murf: Hi Rich

Rich: good morning

MICH: Rich... thanks for sending Utah all the moisture

mjo5712: tampa is  nice now  no huricanes

TerryW: Gary ?

Murf: Houston too

Rich: Yes we have it in solid form

TerryW: Gary you got all the announcments about the conference right?

Rich: yes

mjo5712: doing honey dews outside in nice temp.

Gary_KS: Terry, of cause, I know the KDA conference. If I want to attend the conference, I need to ask a friend to go with me. Because I can't traval by myself.

TerryW: I see

Murf: We will have extra KDA Conference CD's so any one that wants one that was not at the conference, please e-mail Terry

norminstormin has left the room.

Rich: Travel is tough for me too

TerryW: same here

Murf: me too

JACK: I WOULD LIKE ONE HOW MUCH

DarwynP: Did you'se chat after the conference?  I couldn't get on. Wondering if it was my computer or you didn't have it?

billeric entered the room.

TerryW: Murf you are sending them out right?

Murf: but I put a note around my neck and ask the stewardess to love me!

Rich: Looking forward to any new info coming out of the conference

Murf: Yes I will send them out

TerryW: just have them send the request to you

TerryW: cut out the middleman

MICH: Good Morning Bill from snowy Utah

Murf: ya that would be best I guess

kellyC_ entered the room.

billeric: Morning Eric from rainy Phoenix

TerryW: Hi bill, Kelly

Murf: Hey Kelly - Bill

kellyC_: Hi to all

TerryW: rain is good

Murf: sun is better

MICH: Bill thanks for sending up the moisture

billeric: And how, Morning to all you good folks

DarwynP: Cold in P.a. Kelly?

Murf: I got flooded you got burnt this year

Murf: LOL

kellyC_: yes it is minas.. 18

JACK: WE COULD USE A LITTLE MORE RAIN UP HERE IF YOU HAVE TO MUCH

TerryW: WOW

DarwynP: - 20 here

TerryW: -18?

Murf: about +20 in Houston

kellyC_: its been awfully cold here in the praire's this past week

Murf: 65

billeric: This was the first good rain here since last April!

TerryW: now onto the rest of the news LOL

kellyC_: our coldest day was minas 30 with the win chill more like 35

DarwynP: ouch

MICH: Bill we've been in drought too until now

Murf: I do remembere

DarwynP: I guess it's time to hibernate. lol

kellyC_: yupper's lol

Murf: Where did Norman go?

billeric: Mike G. sent out some really good pictures of the conferance.

Murf: they are on the CD

Rich: Any treatment possibilities comr out at the conference?

TerryW: Getting close,, 6-7 hopeful compounds are being tested

Rich: thanks

TerryW: show some promise

DarwynP: things sound promissing

TerryW: yes

Rich: At 81 I'm ready to be a tester

billeric: Lots of stem cell news this past week.  I don't think anything is going to happen for us for awhile but research is really working on it.

TerryW: I added/updated 2 personal stories on the website

JACK: AS LONG AS YOU BELEAVE THERE IS HOPE MY DADDY ALWAYS SAID

DarwynP: good to hear Terry

Rich: As we used to say, it's time to shoot the engineers and start production

kellyC_: u did terry! awsome I"LL check them out..//4

MICH: Those personal stories are great... just stumbled upon them yesterday... they help relate in a hurry

kellyC_: they sure do MIch

TerryW: So did everyone put up their holiday lights

TerryW: Joking LOL

JACK: THIS WEEKEND

Rich: Yeah, I took the tree out of the box!

DarwynP: It was good to hear a little about everyone at the conference also. It hits home in a hurry!

JACK: PUT THE KIDS TO WORK LOL

kellyC_: we got our tree up now lol

TerryW: no kids here

MICH: That would be my wife and she's worn out enough just pushing me in a wheelchair shopping for gifts

TerryW: wife has to do it now

Rich: I only go to stores that have a scooter

DarwynP: tree is up no deco's yet

billeric: we don't do much other than a ton of telephone calls to friends and relatives.

TerryW: We just set up a tree and spray Silly String and its done

TerryW: Joking again LOL

kellyC_: Maryann didnt waste any time putting up the Xmas tree lol...... she sure has the christmas Sprirt..//2

JACK: HAVE TO DO THE TREE MY KITTEN NEEDS A PLACE TO HIDE

DarwynP: nice if it was that easy  lol

TerryW: Kitten love Xmas trees

TerryW: kittens

JACK: SHE IS A PEST BUT WE LOVE HER

TerryW: It's amazing the things kittens can get away with with us

JACK: SHE LOVES TO CLIMB UP AND LAY ON MY LAPTOP WHEN I TRY TO TYPE

TerryW: same here

billeric: Have all you guys remained upright this past couple weeks?

kellyC_: I'am allergic to cats myself..

Dart! entered the room.

JACK: TWO ANY WAY

TerryW: not me,  fell again then the horse stepped on me

TerryW: I am ok

TerryW: bruised bone in foot only

Murf: I haven't fallen since Hover Dam when the USP picked me up

billeric: I have had acouple nasty falls myself.  Even with a cane.

JACK: LAST THREE WEEKS OF WORK I FELL AT LEAST ONCE A WEEK

kellyC_: So far.. I have been ok.. no falls.. yet

Murf: Where is your chair?

DarwynP: it's a &*!@# getting back up isn't it

JACK: ON OF MY CO WORKERS SAID I FALL IN SLOW MOTION

Murf: Hey Dart

Dart!: Hey All!

DarwynP: That is true Jack I noticed that also

JACK: I AGREE WITH THE GETTING UP PART. IF NOTHING WAS THER I WOUD STILL BE LAYING THERE

Murf: I prevent falling by using my chair LOL

MICH: Bill... getting upright is a problem and the colder it gets the harder it gets... my wife often has to left me out of the wheel chair... but so far so good in barely getting in my powerchair to go to work

DarwynP: with myself when I could walk

kellyC_: Slow Motion?

billeric: I try to walk whenever possible-hoping to keep my strenght from disappearing completely

JACK: IT TOOK PRACTICE TO DO IT BELEAVE ME

TerryW: my falls always happen fast.  Boom

JACK: MY FRIED SID WHIN I FALL HE HAS TO BRING A LUNCH BECAUSE I TAKE SO LONG TO HIT THE GROUND LOL,

Rich: One hand is always for holding on to something

kellyC_: LOL

DarwynP: lol

Dart!: I am like you, Terry - I am down before I know what happened!

Murf: I go straight down like a building

Murf: on the ground before I know it

TerryW: We should be fall guys

TerryW: for movies

kellyC_: lol

DarwynP: I could feel myself going but couldn't stop it.  Thus the slow motion

JACK: WE HAVE THE PRACTICE FOR IT

billeric: I seem to catch my right toe on something-stumble and then fall.  Usually wrench my right knee.

TerryW: When I fall now I really take a licking

TerryW: Literralyy from my 2 pups

Murf: LOL

TerryW: they are on me in no time

TerryW: likcing my face

TerryW: licking

JACK: WITH ME IT  IS USUALLY MY FOOT CATCHEXS ON SOMETHING AND I JUST CAN NO CATCH MY BALANCE

MICH: I now try to avoid falls like the plague because up until 60 I bounced pretty good... but now I end up with a goose egg the size of a soft ball

DarwynP: Bill, get an AFO( ankle foot orthodic) it lifts your toesa for you. greatest thing since sliced bread!

Murf: I used to say I tripped on an air bubble

billeric: Sounds just about what I do Jack

TerryW: smkall twigs send me down

TerryW: small

TerryW: or rocks

TerryW: or gopher holes

Dart!: What do you folks think of the suggestion I saw last night for using two walking poles?

billeric: I will have to look into that Darwyn.

JACK: WHAT HAPPENS IS MY LEGS GET TIRED AND I DO NOT LIFT UP LIKE I SHOULD

TerryW: godd idea if you are not having to carry anything

JACK: MY BOSS WOULD NOT APPROVE OF THEM, HARD TO USE GOING UP A LADDER

Dart!: I'm not much good for carrrying anything anyway.

TerryW: U sed to have 2 hiking poles I used but my friends did not appreciate the holes I left in the carpet in their house LOL

MICH: Be careful when if you get an AFO... as I liked the one's that are made for small kids because they still gave me alot of mobility... but some of the adult ones you feel like your ready to joust in steel armor

Murf: Ladder?

TerryW: Me kidding again

DarwynP: Tey are slim and fit right into your shoe. Mine are Swedish AFO"and work miracles

TerryW: LOL

JACK: CONSTRUCTION

Dart!: These poles that I read of have cane-tips for on flooring.

JACK: ONLY THING I KNOW

TerryW: I should do stand up,  or would that be sit down

Murf: Can you concult?

Murf: consult

JACK: SHOULD HAVE BEEN A DOCTOR LIKE MY MOTHER SAID

JACK: SHE ALWAYS SAID I WAS A REAL OPERATOR LOL

Dart!: AFO's???

TerryW: I think Kramer on Sienfeld had KD, he was always falling

DarwynP: This one is less obstructive than most and is short enough that your socks protect your leg from chaffing

Murf: I worked offshore drilling now I write procedures etc.

JACK: JUST NEVER HAD THE PATENTS LOL

Murf: LOL

DarwynP: Ankle foot orthodic

TerryW: I had once had a doctor that was blind

JACK: CAN'T SPELL GOOD EITHER

TerryW: It was har to get an appointment, his Sec was always telling me he could not see me today

Murf: Thats w2hat spell checker is for LOL

TerryW: hard

MICH: Darwyn... do the Swedish Afo's have a more specific name?

DarwynP: lol

TerryW: TY I will be here all week,  please tip your waitresses

billeric: bad Terry, bad, bad , baad.

kellyC_: got to go all the curtain rod fell off see ya all net time...

Murf: Thanks Terry LOL

kellyC_ has left the room.

TerryW: I used to work in a buther shop, but I got fired

TerryW: I got a little behind in my work

DarwynP: I believe that is what they are called

TerryW: I used to work for lenscrafters,

TerryW: I was fored there also

TerryW: made a specticle of myself

TerryW: fired

Murf: Terry - you got any more of those pain Killers? LOL

TerryW: Lots

Murf: I need some!

Murf: LOL

TerryW: OK , I killed the room with those jokes

DarwynP: the back of the heel is cut out up about 2 or 3 inches, so the plastic goes down the side of your heel instead of cupping itr

billeric: Got a 9:30 appt. so got to go.  See youse guys!

Murf: Take care

billeric has left the room.

DarwynP: bye

Dart!: Where / how would I get inforrmation re: AFL's

JACK: THEY MADE ME LAUGH

TerryW: We have to try to keep a sense of humor

JACK: IF YOU CAN MAKE ONE PERSON LAUGH EVERY DAY THAT IS A GOOD THING

TerryW: it is very hard to sometimes

JACK: I AGREE BUT YOU HAVE TO THINK POSSITIVE

MICH: Dart... one good place for AFO info would be the MDA clinic

DarwynP: Most physical therapists  and most sport medicine places that sell rehab stuff

JACK: THERE IS ALWAYS SOMEONE THAT HAS IT WORSE THE YOURSELF

TerryW: yes

JACK: I AM STILL MOBLE IT IS JUST NOT AS EASY AS IT USED TO BE

TerryW: Mostly my animals see my frustration when I am at home alone during the day and I fall and struggle with thing on the property,  The hear me talk to go

TerryW: talk to god

TerryW: asking him is this some kind of practical joke he is playing on me

DarwynP: Do they answer? ol

JACK: THATRDEST PART TRYING TO DO THINGS THAT I USE TO DO AND I CAN LIFT IT UP IS THE HAT

DarwynP: or he

TerryW: they look at me like i am nuts

DarwynP: yeah I know the look

DarwynP: crooked heads and all

TerryW: God must answer me somehow because I get back up and continue on

DarwynP: true

MICH: Jack... I agree... hard to lift a hood up or even get the coat up to my shoulders without shimmying it with the use of a wALL OR COUNTER

TerryW: God gave us mountains so we can learn how to climb,  The Video

TerryW: you gotta get back up

DarwynP: I remember

TerryW: I just think of that song when I fall

TerryW: Mountains by Lonestar

JACK: I NOW HOW THO CLIMB THE MOUNTIAN IT IS THE FALLING DOWN THE OTHER SIDE WHEN I GET TO THE TOP THAT IS THE HARD PART LOL

JACK: ARE YOU A GOAT ROPPER TERRY

Dart!: Terry, you have a good philosophy! And true, we HAVE to get back up!!

DarwynP: I'm finding it harder to get my arms above my shoulders lately also

MICH: Darwyn...can I ask how old you are? I'm 61

JACK: THEY TELL ME I HAVE PINCHED NERVES THAT THEY WANT OT OPERATE ON TO WO THAT HAS CAUSED ME A LOT TO TROUBLE ALSE

TerryW: The video Mountains by lonestar ---> http://www.youtube.com/watch?v=ZEQYN1DC220

DarwynP: Did you fall asleep there murray

Murf: sorry TJ was just in

Murf: Had to make sure things were going to plan

DarwynP: link works terry

TerryW: yep

TerryW: fingers not working good typing today

JACK: BEEN A GOAT ROPPER FOR YEARS COUNTRY IS THE BEST

JACK: SAME HERE

JACK: WELL IS MUST RUN NICE TALKING TO YOU ALL

TerryW: OK All,  I gotta go,  I hope to see you all in chat again soon.

END CHAT