| Kennedy's Disease Chat Transcript 12-01-2007 Topics: Topic: Open Forum Host: Terry Waite | ||||
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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.
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