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Kennedy's Disease Chat Transcript 12-02-2006
Topic: Open Forum
Host: Terry Waite
Dart!: We are getting a god start for the day, and Good morning!
TerryW: I was up late so I may be a little slow this morning
TerryW: We had a Bunko Party
TerryW: 12 People
DarwynP: I'll bite, what is Bunko?
TerryW: I went to bed at 11:30 and my wife stayed up with the crowd until 1am playing darts
TerryW: Bunko is a dice game
TerryW: sort of like Yahtzee
TerryW: first you have to roll 1's, then 2's
TerryW: so on
TerryW: teams of 2
DarwynP: I see, sounds interesting
TerryW: Its a lot of up and down changing chairs
TerryW: hard on legs
Dart!: Two greats - you have friends and you all want to party.
DarwynP: It's a lovely 4 deg. Far. today here in Winnipeg
TerryW: Since we moved out of the City up into the mountains to a small town we have many more friends with time
Dart!: Come midnight and I start to turn into a pumpkin.
TerryW: In the city everyone was always to busy
TerryW: I am usually in bed by 8PM
Dart!: Is yours a rural community, Terry?
DarwynP: I agree City life is really busy. I still haven't got used to it.
Dart!: How far are you from fire protection?
TerryW: Much slwer pace up here. people actually have time to get together for dinner, BBQ's
TerryW: Fire dept can be her in 4 minutes
TerryW: paramedics also
Butch entered the room.
TerryW: hey there
Dart!: Sounnds good - lots of trees? And you can use you quad without getting in trouble with the law.
Butch: Hi guys--How are you all doing?
DarwynP: I went from a village of 800 people to a city of 700,000. It's pretty hard to adjust!
DarwynP: Hi Butch
TerryW: We can shoot on our property, ride ATV's, Bon fires
Butch: Glad to see so many on the chat this early.
Murf entered the room.
Murf: Morning All
TerryW: Last week I was almost attacked by a Bobcat
Butch: Hi Murf.
DarwynP: Good morning
DarwynP: You scred him Terry?
craig_h entered the room.
Murf: Wow! Canadians everywhere
Dart!: 4 degrees in Winterpeg? That is downright balmy! 18 degrees of frost here in B.C.
DarwynP: Yes -14 celcius
Murf: 50 ih Houston
TerryW: I was out on our property fixing some christmas lights and sitting on the ground in our bush garden he was sneaking up behind me and I heard him, I turned my head and he was less than 8 feet from me
Murf: How big?
smblasko entered the room.
TerryW: I stared him in the eyes and then I threw my arms up in the air and let out a Roar
DarwynP: Hoping for an easy meal! Ha
Dart!: Too close, Terry, and H'lo All!
TerryW: He was a Big Bobcat
Murf: Good one Terry that was obviously the right thig to do
Murf: 2 1/2 or 3 frt?
TerryW: With me sitting on the ground all quiet fixing the lighted deer I think I looked like prey to him
TerryW: he was about 3 ft tall
Murf: yup Big enough
Dart!: You were down low, so would have been easy munching.
Butch: When they are only eight away--they are ALL BIG.
TerryW: the night before he attacked one of our cats in the same spot but the cat got away
TerryW: I think he was coming back to the same spot to get her
TerryW: Freaked me out
TerryW: Hello SMblasko
Murf: He was hungry you should have given him a leg up
Dart!: We have had cougars, fat ones, because they were cleaning up on the cat populaton.
TerryW: Hi Murray
TerryW: Hi Craig
Murf: Hey Terry
craig_h: hi Terry (cat man)
TerryW: so how is everyone feeeling
TerryW: I had a very bad couple of past weeks
Murf: like the cat
TerryW: I fell about 10 times
craig_h: weak day here, and I gotta drive to Bethesda tomorrow
Dart!: Like a neighbor - he says 110%, but he lies.
TerryW: luckily its all dirt at my place and gravel
billeric entered the room.
TerryW: hi Bill
DarwynP: Your second visit Dart?
billeric: Good Morning Terry
Murf: I fell in the garage last Sunday and now I have a purple toe and a knee I can barly put any weight on
Dart!: No, I've been hanging around for quite awhile, thanks.
Butch: Craig--This is Ron--I will be at NIH on Tues Dec 5th.--See you there.
DarwynP: To Bethesda that is.
craig_h: hi Ron, my appointment is Monday only
Murf: Cool, I go again on the 18th
TerryW: Yep murray I fell on my knee also and did something to it, now when I get down on my knee it feels like a knife going in
Duane entered the room.
TerryW: I am hoping it goes away
Gary_KS entered the room.
TerryW: Hi duane
Murf: I heard that Terry
Duane: hello all
Dart!: Gravity is great when you are pouring your coffeee, not so when falling.
Gary_KS: Good morning all. Gary Uchiyama from Kansas City.
DarwynP: I have the same knife Terry
TerryW: is that duane & lori?
TerryW: Hi Gary
Duane: nope just duane
Murf: Morning Bill Duane Gary and everyone else I missed
TerryW: Duane B?
craig_h: Butch, when do you arrive?
billeric: Morning Murry
Butch: Duane --How is Lori doing?
Murf: Darwyn - will you kindly pull you knife out of my knee then too please? //1
Butch: Craig--I will get there Monday evening.
TerryW: Anyone near the big freeze back east
TerryW: ice storm
Duane: she is sleeping. it's 32 degrees here but feels lide 20
craig_h: I might only stay one night and drive home after the appt. If I stay the second night, would be great to meet ya
billeric: Good news from Phoenix this week. Local University has isolated the gene responsible for ALS. Big breakthrough.
Murf: We got lucky in Houston (it didn't freeze)
Butch: Its cold here in Penna. but no snow or ice.
craig_h: it's 46 here is SW Virginia
DarwynP: I've lost strength again the past week or sr and another 5 lbs. Seems to be more muscle than fat though!
TerryW: 32 here in California also
Murf: Bill - could you send us the article?
Butch: Craig--I will be staying at the double tree. Where will you be staying?
Murf: That is good news!
craig_h: same place
goody entered the room.
TerryW: They are getting closer all the time with these diseases
billeric: I will do it Murf.
TerryW: hello Goody
Murf: Is that you Bud?
Dean entered the room.
TerryW: Hello Dean
Murf: Thanks Bill
goody: Hi troops---I missed the last chat
TerryW: Lot's of chatters ere today
Dean: Hi terry
Murf: Goody - are you Bud Goodnight?
Duane: had dr appt last week in Dallas, still progressing. I've been having problems with speech after eating. they said jaw muscles and soft palette. i try to smile and nothing.
TerryW: Does anyone watch the TV show "House"
goody: on ther being cold --My mouth and hands are my biggest problem area--Neither works well
doughboy entered the room.
Murf: Morning TJ
TerryW: That show shows just how much of Gunea Pigs we are in hospitals
Butch: OK! Craig.
doughboy: good morning everyone
billeric: Me too goody
doughboy: morning murf
TerryW: I like the show
Butch: Hi TJ.
Murf: Well I hoped I didn't kill your internet connection this morning will all the quotes I sent you
TerryW: Hi TJ
doughboy: Hi Butch
doughboy: Hey Terry how's it hanging
goody: murf-- I have some info coming on next years meeting but won't have final for a week or two
TerryW: Sorry to hear that Duane
Murf: Bud - sorry about all the e-mails
goody: no problem
TerryW: I have noticed that chewing gum makes my Jaw real sore & weak afterwards
DarwynP: How many of you have problem with blood pressure?
Dean: How does everyone felling. Any positive changes in anyone strength.
Murf: I thought I sent them a week ago but I was having problems
TerryW: I do Darwyn
doughboy: I do Darwyn
DarwynP: Not for me Daen
Duane: is anyone of u experiencing same? any suggestions?
billeric: Have we got a crew here today-or what?
craig_h: felt pretty strong this week, until yesterday
TerryW: 160 over 114
TerryW: But now I am on some new meds
DarwynP: Just wondering if it is comon with us
Murf: I've got a new wireless network because the old one flew south for the winter
TerryW: brings it down to 130 over 92
doughboy: I've been having alot of anxieity the last couple of days!
DarwynP: 180 over 110
DarwynP: now with diovan hct it is 118/78
TerryW: Anxiety is common from time to time
billeric: with meds I keep mine at 140 over 80.
doughboy: I take Cardura at night and Baycor during the day
Murf: I'm on Atenolol 50mg and Im @ 130/70
Duane: w meds mine is 132/80
goody: I have to go now to pick up deposits before the bank closes
Butch: So long Bud.
TerryW: I think we all have poor circulation problems to the hand and feet right?
Dean: Is anyone working out at the gym to biuld up your strnght?
DarwynP: Yes Terry
doughboy: I'm with you on that one Terry, I know I do!
Duane: yep. the cold is especially hard on me.
goody: I'll try to remember to be here the next chat
craig_h: terry, 2 weeks ago, I could barely feel my right hand, wasn't sure if I slept on it wrong or if it's carpal tunnel
TerryW: Dean, we have found that that does not really help in most cases but light exercise & stretching helps keep what we have toned
goody: later and God Bless
Murf: take care Bud
DarwynP: Knees down are the worst for cold and circulation
goody has left the room.
Murf: 131/78 just took it
Gary_KS has left the room.
Murf: Must have been the three cups of coffee
TerryW: has anyone found anything to help with the circulation problems
Dean: thanks Terry
doughboy: Both of my arms and legs are feeling numb a lot lately, I think sometimes on the legs it's the ziactic nerve
Duane: no. just figure its part of disease
Gary_KS entered the room.
TerryW: Dean no heavy weights, you do not want to tear muscle
Murf: A warm arm chair??
Gary_KS: I am back.
TerryW: it will not rebuild
Duane: hello back
doughboy: I found my vibrating and warming chair helps me some
Duane: i avoid weights. but continue with aqua t
TerryW: I wear glows with a inner fleece lining
billeric: I would like to try some balance excercises. I am losing balance quite quickly.
Dean: Terry have you ever worked out with weight?
doughboy: Won't help
TerryW: I also Bill, I don't know what to do to help it Bill
Murf: Bill - try streching
Butch: The other day I was in my back yard on my scooter. The ground was soft from a rain...You guessed it. Couldn't move the scooter. Lucky for me two guys came by and gave me a push. Lucky me.
TerryW: Dean a while back, we have a home gym
TerryW: weight set
DarwynP: I use a electric pad to warm my legs and feet. Feels beter anyway.
Murf: Ron - warn make a great winch
doughboy: Tried to work onb putting up a few x-mas lights yesterday, hurt my chest terribly
Dean: Terry are you in the nih program?
Duane: b careful
TerryW: I remember that TJ
TerryW: no I am not Dean
Duane: terry , i thought you were
Dean: Terry neither am I.
Murf: me nether
billeric: Me neither.
TerryW: It has gotten cold here and my hands are back to the point that when I go to the grocery store I can hardly sign my name to pay for the groceries
TerryW: summer was fine
DarwynP: Does anyone know if Kelly went to NIH?
Murf: Shop indoors Terry
Duane: u 2? I avoid checks. only use debit card.
Butch: Murf--are you no longer in the NIH program?
TerryW: it is indoors, they keep the isles so cold
Murf: What's a check?
doughboy: smblasco, have I met you yet? If not my name is TJ or doughboy on the chat and I'm from Waller, Texas! I live about 30 mins. from Murf.
TerryW: I mean credit card, you still need to sign
TerryW: and I can hardly do that
TerryW: hands have to be worm
doughboy: Yes Terry my handwriting sucks also!
DarwynP: NIH wasn't sure if they would get him there. He was to go around now.
craig_h: most places here with a debit card you just punch in a pin code
TerryW: see, my hands are cold now and I make more typos
TerryW: I have no debit cards
Murf: Turn up the heat
doughboy: Oh come on now Terry, you just can't spell, your a yankee!//4
TerryW: I am sitting on my hands now and typing with my tounge
TerryW: keeping them warm
craig_h: might be something to look into Terry, I have to sign credit cards and pin code debit card
smblasko: TJ - I am Mike G's nephew - Sean - live in Austin
Murf: TJ - Took delivery of my confederate 6 lb cannon yesterday
Duane: pin code much better.
Butch: He may be a yankee---but you are a yanker---LOL.
TerryW: 6lb cannon? is that for nasty neighbors?
doughboy: Okay I know Mike, welcome to the chat! I used to go to Austin quite a bit when I was with DPS
Murf: Ron - It's spelt W-a-n-k-e-r
doughboy: C'mon Butch, you taught me well!
Murf: Every thing is bigger here Terry
TerryW: Has anyone got a cold this season yet?
TerryW: I got my shot
billeric: Anything exciting happening in the K.D. research are lately?
TerryW: I am trying to stay clear of sick people
Duane: nope. got my flu mist. sposed to be better than shot
billeric: are equals area
Murf: I missed both appointments for my shot so now i guess I gotta get one at the horse pistol
DarwynP: No cold. Haven't heard anything new on KD.
Butch: Isn't it great that they are having a break thru for ALS. Maybe were next!!!!
TerryW: I have posted some new stuff on the KDA web site. check the Whats New page
Murf: Duane - what is this mist?
TerryW: look for the link at the top right of the main KDA page
billeric: will do Terry.
TerryW: interesting reports
Duane: liquid , dose in both nostrils.
Dart!: To avoid colds and 'flu, I highly recommend 3 grams of Vitamin C daily! I haven't had those sicknesses for a dog's age!
Duane: dr reco'd
Murf: Right ok is it over the counter?
Butch: A little burbopn--Ron recommended.
Duane: nope. flu vacinne
TerryW: Does anyone here have food allergies or IBC
Duane: oh, yes you mjust gargle with whiskey
DarwynP: Not me.
Murf: Ron - tried that 2 years ago - didn't like the side affects
TerryW: IBC = Irratable bowel syndrome
Murf: Made my leggs wobbly
Butch: but, if you fall--you are very relaxed.
TerryW: It seems that when we go out to eat a half hour after I find myself running to the bathroom, only happens when I eat out
Murf: My bowels also irritate people
doughboy: that's because of your canadian bacon, Murf
DarwynP: Actually Terry the only meds I'm on are for the High blood and the study drug.
Murf: Must be
Murf: Not long now TJ
TerryW: I think it's sulfites in food, especially salads . Used to preserve the lettuce longer
Duane: just have uncontrollable desire to pass gas while shopping. :)
TerryW: LOL, cleanup on Isle 6
billeric: I have somewhat of the same problem Terry. I am trying a couple over the counter meds such as Gas-X and Pepto Bismol about an hour before going out.
Butch: Good one Terry.
Murf: Good one Terry
Dean: Darwyn is that the study drug from NIH? and how are you feeling, how long have you been on it ?
craig_h: I can't say "good one, Terry" .............. my mom reads the chat archives (Hi Mom)
TerryW: I hate it when you are driving after eating and you get those severe crams that come and go and get more intense. Your foot on the acelerator seems to go down harder also
doughboy: Hell I pass gas all the time! I think the main problem here is being over weight and our diets. Causes high blood pressur, gas, heartburn, etc.
Duane: does make shopping easier on discount days
DarwynP: Yes Dean, Started Oct.14th, as I said farther up I have felt weaker again the last couple weeks.
TerryW: If an officer stops me I will tell him if he does not let me go I am gonna fill my shorts LOL
doughboy: I shop using the net
craig_h: when first diagnosed with Kennedy's I lost nearly 100 pounds, felt so much better. It crept back on me, so the day after Christmas I start the ol' diet back up
DarwynP: Might be due to the cooler temps also.
doughboy: what type of diet Craig!
Duane: I have lost 20 lbs down to 160
billeric: Combine our problem with low toilet stools and now you have a problem!
doughboy: works huh?
Butch: Great Duane!
craig_h: I actually lost the weight to fast, 100 pounds in about 8-9 months
TerryW: Extra weight on the body must be very hard on someone with HD, because I know I can barley walk carrying a 10 lb sack of food
DarwynP: Craig I've lost 35 since diagnosed and that not even trying to loose. I think most of it is muscle!
Duane: i actually feel better with less weight.
craig_h: Terry, I have to get rid of my High-Def (HD) ??? noooooo
doughboy: Hell I can't carry a 1 lb. sack
TerryW: why craig?
craig_h: terry, your typo, lol
TerryW: LOL I see
Dean has left the room.
doughboy: Duane my neurologist told me the other date the weight I was losing was muscle and not fat! Not good!
craig_h: once you watch football on HD, you become a snob to football not on HD
Duane: hell i can't carry a tune! :)
TerryW: I am 6 ft and 153 lbs
doughboy: I'm with you Duane
Duane: be careful.
Murf: TJ - it's the musle holding your gut in
doughboy: A big gut
doughboy: Makes me depressed
Murf: I got one too
craig_h: Darwyn, was you pretty muscular before KD set in ?
DarwynP: I still have a big gut also. 165 now and 5' 8
Murf: 6 foot?
TerryW: I never had large muscles but I had lots of endurance
DarwynP: Not muscular but very active
TerryW: used to load roofs for my Dads company
TerryW: when I was young
Murf: you mean 5'6" Terry
doughboy: Hell I was Mr. Atlas now they call me Fat Albert
TerryW: 6 ft
DarwynP: Hunting, fishing, snowmobiling, telephone installer.
Dart!: Terry - load roofs?
craig_h: well, I gotta do laundry before heading to Bethesda ............... later y'all ...........
Murf: I'm 5' 6" and I did think you where that much toller than me
DarwynP: nothing now
doughboy: Mountain man, iditirod, conquering mt. Everest, you know the usual
Murf: B3e good to see you again next year
Duane: had to buy a new cordless drill. couldn't lift the old one.
Murf: Take care Craig
doughboy: gotta go pea b back n a min.
TerryW: I used to like to bowl, but now I can not even lift a kids bowling ball, and when I could it felt like it was going to tear my arm off when I swung it
Butch: So long Craig--stay healthy.
craig_h has left the room.
TerryW: bye craig
TerryW: to late
Duane: know what you mean. had to quit bowling. my knees couldn't take the fall after ball delivery
Murf: I used to hunt and fish too
Dart!: If we cannot do anything about muscle-building, then we just have to work at improving our personalities - and typing skills.
Murf: Well put
TerryW: I know what you mean duane
doughboy: I agree Dart
doughboy: Is everyone ready for Xmas?
DarwynP: I can barely walk now
TerryW: no tree up yet
TerryW: don't know if we will this year
Butch: TJ--Not me--still have alot of shoping to do.
DarwynP: not even close to being ready yet
doughboy: come on TW get it up!
Duane: tree, outside lights up.
TerryW: Last time we put it up it stayed up for 20 months
TerryW: outside lights are up
TerryW: we just took it down in July
Butch: How is your ATV Terry?
TerryW: It is working great for me to get around
TerryW: The Yamaha Rhino
Butch: Can it outrun a bobcat? LOL
TerryW: Like a Golf cart on Steroids
doughboy: Well goota run, see you on the next chat, Nice meeting you Sean, email me sometime! Bye Murf thanks for calling and reminding me about the chat! Bye All!
TerryW: it can go about 50mph
Butch: So long TJ--Stay healthy.
Murf: Take Care TJ
billeric: Bye Doughboy
doughboy has left the room.
Duane: do you compete at the mud bog rallies?
TerryW: not yet
DarwynP: well I have to go. Have a good one all !!
Butch: Terry--50 mph--WOW. must seem like you are flying.
TerryW: bye Darwyn
DarwynP has left the room.
TerryW: last weekend we too the Rhino and ATV up on the mountain trails, we went 20 miles back onthem. It was fun
billeric: Got to go guys. Nice chatting. Thanks Terry.
TerryW: good chat all
billeric has left the room.
Butch: Murf--thanks for the call yesterday. Must go for now. Stay healthy till next we chat.
TerryW: sean, you are not saying much are you still with us
Murf: NP Talk nto you later
Butch has left the room.
TerryW: so is everyone all chatted out?
Duane: i'm still here.
Dart!: That quad is a great way to get into back country. Are you allowed to use it on pulic roads?
Murf: I was saving (just in case)
TerryW: Susanne is taking a week off next week so we can finally spend some time together
TerryW: she has been working super long hours
Murf: Great you guys need some time
TerryW: I have saved it also Murf, thanks
TerryW: have shopping to do and things around house, ride the horses and stuff
Murf: I 'll have to go here so everyone stay safe (and on your feet)
Duane: bye everyone. till next chat,
Murf has left the room.
TerryW: catch everyone later. I will save the chat nowEND CHAT