| Kennedy's Disease Chat Transcript 12-02-2006 Topics: Topic: Open Forum Host: Terry Waite | ||||
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Chat Participants: TerryWMurf Dart! billeric butch smblasko DarwynP Butch Gary_KS goody craig_h doughboy duane Dean BEGIN CHAT
TerryW: Hello 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 DarwynP: OK 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? TerryW: yes 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: slower TerryW: Fire dept can be her in 4 minutes TerryW: here 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. DarwynP: scared Murf: Wow! Canadians everywhere Dart!: 4 degrees in Winterpeg? That is downright balmy! 18 degrees of frost here in B.C. craig_h: howdy 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 Murf: //2 craig_h: hi Terry (cat man) TerryW: lol 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. Duane: fine. 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. craig_h: butch, if you want, email me at craig_h@adelphia.net 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. goody: yes Murf: Morning TJ TerryW: That show shows just how much of Gunea Pigs we are in hospitals Butch: OK! Craig. TerryW: LOL 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 TerryW: wow DarwynP: now with diovan hct it is 118/78 TerryW: Anxiety is common from time to time goody: anyone can contact me on goodnightmoon@insightbb.com 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 Murf: //2 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. TerryW: gloves 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 TerryW: warm 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 Duane: :) 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: :) 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? TerryW: LOL 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 Butch: LOL 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 Murf: o TerryW: Does anyone here have food allergies or IBC Butch: Burbon!! 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 Murf: LOL 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 TerryW: cramps 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 craig_h: nutrisystem 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 TerryW: KD TerryW: typos TerryW: ahh 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: :D 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. DarwynP: bye 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. Duane: amen 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 TerryW: LOL 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 TerryW: bye 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 TerryW: took billeric: Got to go guys. Nice chatting. Thanks Terry. TerryW: good chat all Duane: cool. 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 Dart!: public 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 now
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