| Kennedy's Disease Chat Transcript 04-5-2008 Topics: Topic: Open Forum Host: Murray Williams | ||||
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BEGIN CHAT Murf: Hey Terry Murf: Hows your weather? TerryW: Hello Robyn, Murf TerryW: Nice weather here TerryW: But Allergies are going nuts Murf: I think Robyn is off having coffee TerryW: Taking Allegra and Zyrtec robynbird28 has left the room. Murf: It's going to clear here today TerryW: hmm Murf: ok TerryW: hope she did not get bounced Murf: I hope it wasn't something I said Murf: I just had the attic insulated TerryW: I have just been going thru my coin collection, have not done it in a while, It has doubled in value Murf: if you can sell it Murf: Your house has dropped by 50% :-) TerryW: LOL TerryW: not 50 about 15% Murf: Will the bank take coins? Murf: :-) Murf: I don't know where mine is but I don't plan on selling TerryW: do you collect coins TerryW: I keep the for emergency Murf: not really ... state 1/4s TerryW: I see TerryW: Been collecting since I was a kid Murf: for the grand kid TerryW: about 8 years old Murf: I collected stamps for a while Murf: coins are better Murf: I think TerryW: Never give a child access to a coin collection Murf: he'll spend it? TerryW: they don't understand the value, they just see them as spending money Murf: LOL Murf: gummy bears TerryW: my parents used to go to Vegas when I was small and they would come back with buckets of Nickels, dimes & quarters and I would go thru them and get the good ones Murf: cool TerryW: This was in the early 70's so I would still find lots of silver ones and indian head nickels Murf: I bet they are worth a bit now TerryW: I must have about 30 lbs in a bag of wheat cents Murf: You should sell them on eBay TerryW: maybe Murf: I still need to list my lift myblackberrypho entered the room. TerryW: Hey there, Nice to see you could make it Murf: Good morning Blackberry myblackberrypho: Hello everyone TerryW: I spoke with blackberry the other day on phone Murf Murf: are you on a blackberry? Murf: New member? TerryW: yes myblackberrypho: I had to download java Murf: cool ... welcome TerryW: more should be joing in soon fl-don entered the room. TerryW: we were just talking about one of my hobbies, coin collecting Murf: hey Don TerryW: hi Don fl-don: gm from sunny fl myblackberrypho: Hello TerryW: Myself and Blackberry have about the same progression and issues withthe pain of KD Murf: Blackberry - did you get a little rain last week? myblackberrypho: lot of it and a cold to boot Murf: Been in a lot of pain lately ... just started on Ultram ER TerryW: Be careful with that cold Blackberry so it does not turn into something worse myblackberrypho has left the room. Murf: oops TerryW: Hmmm, sounds like we are having issues myblackberrypho entered the room. TerryW: I am not happy with this if that is the case TerryW: Blackberry did the room just knock you out? Murf: did you get booted? fl-don: gonna meet mike g 4 benefit lunch later 2day Murf: Good to discuss the bike run? Murf: Don? fl-don: bike run??? TerryW: Blackberry, one thing about the chat room, you cannot go browse to other websites while you are in it or the room will boot you out. myblackberrypho: My chat room just closed on me i had to re sisignnin fl-don: benefit 4 veterans memorial park loshimo1 entered the room. TerryW: you can do e-mail & stuff like that just not use the browser to go to other sites Murf: We're planning a bike run for central FL Murf: ok Alexandre entered the room. TerryW: hi loshimo fl-don: we have a friend who participated in a bike run in central fl doe ms Murf: good benefit TerryW: Hi ALex fl-don: for ms myblackberrypho: Hello loshimo1: Good morning Kdr's... This is Luis Shimomura from San Francisco. Hope everyone is doing fine this morning!!!! fl-don: gm luis Murf: We're trying to get one going for KD Alexandre: Hello people, nice to meet you again! Murf: Hi Loshimo TerryW: Blackiberry, when you got knocked out of the room were you trying to do anything else on your PC or just the chat? myblackberrypho: No just watching screen TerryW: thanks loshimo1: Hi Terry, Murf and everyone else!! TerryW: do you have dial up or DSL or cable myblackberrypho: I use wi fi TerryW: ok myblackberrypho: I found out my older brothr is very sick with kd Murf has left the room. TerryW: Sorry to hear that Blackberry, billeric entered the room. Alexandre: It's a nice autumm morning here in Curitiba today! loshimo1: Sorry to hear that mbbp.. Murf entered the room. loshimo1: Alexandre, my friend... how are you doing? myblackberrypho: he is transforming his 3 level house to live in basement cant afford to sell house cant climb stairs Murf: punt TerryW: murf?\ TerryW: Hmmm, TerryW: Sounds like the techs made it worse Murf: lost the website too Gary_KS entered the room. MikeG entered the room. loshimo1: Are we in trouble here? TerryW: hi all that just joined Murf: Hey Alex, Bill, Gary, Mike myblackberrypho: Hello terry MikeG: good morning all fl-don: site working fine 4 me Gary_KS: Good morning, all. Gary Uchiyama from KC. It is a nice spring weather in KC this morning. Alexandre: Very nice my friend Luis, what about you? Murf: Don give it a minute Murf: this is the second time I have ever been knocked off billeric: Good morning guys myblackberrypho: I wish it would warm up here Murf: in 4 years thats not bad i guess loshimo1: I'm doing OK. I'll bet it's very nice there in Brazil. Murf: only 51 in Houston TerryW: Blackberry I will send you some heat from Calif TerryW: expect it in a week TerryW: I am sending US postal service myblackberrypho: that would be great Murf: Terry - you'll need to save TerryW: I was telling Blacknberry on the phone the tip about being lifted by the Belt for us KDers jahbundance entered the room. TerryW: I am murray, thanks Murf: Always wear a belt! TerryW: Hi Jah Alexandre: Yes, it is everything ok with me here in Brazil! myblackberrypho: with the airline called skybus with cheapseats I may fly that way if things dontwarmuo jahbundance: hi Terry Murf: Two new members this week Murf: Hi Jah welcome TerryW: We were joking on the phone about how sometime people see us and think we are drunk when we walk and weave and fall down myblackberrypho: Hello fl-don: think skybus went under 2day TerryW: Murray had that happen to him and he laid in the parking lot for how many mins? Murf: 40 myblackberrypho: really TerryW: that is crazy Murf: I had to call the resturant Murf: on my cell phone Murf: help! Murf: :-) TerryW: 2 guys came out and lifted him up Murf: Could have been worse TerryW: people just walked by him and did nothing Murf: I could have been robbed jameson411 entered the room. TerryW: hi Jameson Murf: Hey Jamies myblackberrypho: I know how that is jameson411: morning guys myblackberrypho: I think people are afraid to help TerryW: Hi Jah, are you new to the chat room? TerryW: wherre are you from jahbundance: first time TW TerryW: you have KD? Murf: Yes, with all the sueing going on jahbundance: SBMA so they say loshimo1: Falling down is always no fun. However, when it happens outside and you're alone, that's really scary!1 Murf: and they don't know what the problem is TerryW: were you tested with the DNA blood test MikeG: sorry to hear that Murf. Falling down is the worst thing that can happen to us. jahbundance: not yet, but it's the next thing I guess myblackberrypho: they think your on drugs or drunk TerryW: ok MikeG: especially when you can't find anything to get up on... TerryW: I tell people I feel like the stock market, I keep falling Alexandre: I suggest that KDA should support the scientists that are making researches with stem cells all over the world jahbundance: I'm in SoFla Terry TerryW: I would rather be more like a gallon of gas jameson411: lol TerryW: Sofia ? TerryW: where is that jameson411: I tripped in my classroom a few days ago... and fell down in a bike shop. No injuries though, except to my pride :-) TerryW: So Fla billeric: If I fall and can't get my knee up on something I'm done till help arrives TerryW: OK Duh me jahbundance: south florida JoeK entered the room. Gary_KS: Murf, keep a whistle and blow whistle to give attention near you. Murf: ok LOL jameson411: an S.O.S., eh? MikeG: where in So FL? I'm in Tampa Bay. jahbundance: Jupiter, just North of WPBeach Alexandre: because there are a great hope for the treatment or even a cure of neorological diseases with this kind of researches Murf: TJ can't log on (dial-up connection) MikeG: Great! That's one more to add to our group. We have about 4 of us now. loshimo1: I took a spill a few days ago in our kitchen. Was tasting something that was unexpectently hot, turned around, lost my balance, fell on my knees and then hit the floor with my head. Luckly there was no damage to the floor. jameson411: ouch billeric: I am on dial up Murf and no problem Murf: LOL jameson411: I'm glad I didn't injure a bike. Murf: I've broken the floor in the bathroom kitchen and garage jameson411: The bike shop owner did look at me funny though loshimo1: Lucky for me, my wife was nearby and was able to lift me up. Murf: He thought you were drunk Murf: most people do jameson411: probably. jameson411: And it's not like I jameson411: i'm going to explain about kd fl-don: brb loshimo1: BTW... my wife has this technique she uses to lift me off the floor. Anyone interested? Murf: Hard for us to drink becuase our legs are rubber already LOL jameson411: yes. myblackberrypho: My general practioner says i need to join a gym Murf: Say NO jameson411: I Murf: bad idea Blackberry jameson411: i'll teach my students the tech so they can help me up when I fall in my class Murf: I tried that myblackberrypho: lift weights to build muscle who is he kidding Murf: LOL myblackberrypho: he asked if it was fro JF kennedys disese and his back TerryW: You need to see a physical therapist that is familiar with working with people that neuromuscular diseases MikeG: a therapist who understands your problem and limits is a better choice. Murf: Ron Wiker can't get on either loshimo1: Whenever I fall, she gets in front of me, puts my arms around her neck and then give me a bear hug while lifting me (with her knees bent of course). She says she can lift me like a sack of potatoes. TerryW: what method is that Lou TerryW: ok Murf: Lou Lou myblackberrypho: I made him a print out from this websiteto inform Alexandre: I am doing hydrogimnastic and for me is being good! billeric: What is it Alex? myblackberrypho: he put me thru heatrt tests and even said at one pint I had ALS loshimo1: A nurse taught us that one time when I fell outside the grocery store. She must have been about 5'2" and 105lbs and she lifted me like a small kid. myblackberrypho: so does my 18 year old daughter Alexandre: is just exercises in the pool that has low impact, I can do many things that I can´t do out of the water MikeG: good idea Alex MikeG: you can't fall in water... myblackberrypho: I need to get away from cold my fert and hands are like ice in winter cat use them at all Alexandre: it isvery common here in Brazil for reabilitation TerryW: I know that feeling Blackberry TerryW: Mike but you can waterfall LOL myblackberrypho: as you can see from typing TerryW: Blackberry do you uses those heat packs that go in your pockets TerryW: I use them TerryW: they work good TerryW: buy in bulk myblackberrypho: I felt GREAT when I went to Vegas last July TerryW: Our last conferenc was in Vegas for the KDA Murf: TJ will e-mail you Terry with what he got when he tried to login this morning TerryW: ok myblackberrypho: Hot baths and showers work temp TerryW: yes Murf: Ron is going to try a little more before giving up but I think they are getting the same thing. login ... click ... boot! MikeG: Blackberry, that's exactly what I was facing but much farther south in Atlanta. I moved to Florida - Tampa Bay area - and it's fantastic! Real hot in the summer and almost freezes in the winter. MikeG: it's 75 right now TerryW: sometimes when my hands get cold when i am outside and i come in I run a sink with warm water in it and then stick my hands in the water for a few mins TerryW: it works well MikeG: will be 85 - 88 later TerryW: hurts at first TerryW: that is why I do not make it real hot Murf: I have my pool at 95 now and pain goes away for a while myblackberrypho: Man when it get 17 below 0 its brutal here TerryW: I also have a small heating pad going at the desk Murf: 104 is the limit for us I think TerryW: I wrap my hands up in it TerryW: works great TerryW: keeps the finger working TerryW: s Murf: My legs hurt when they get cold myblackberrypho: I can handle 104 if its not humid billeric: More of a hot tub Murf! Murf: water temp MikeG: I like the hot tub set at about 102 Murf: but it feels sooooooo goooooooood loshimo1: I've made my own warmer by using an old clean sock, stuffing it with uncooked dry rice, tying the sock then microwaving it for 2 to 4 minutes. Once done, it remains warm for at least 15 minutes and can be used on any part of the body. myblackberrypho: does anybody have any problem with very dry hands TerryW: good idea myblackberrypho: and fert myblackberrypho: feet TerryW: blackberry the only time I get really dry hands is when I am using the fireplace putting wood in it MikeG: I have dry hands billeric: Always a problem in Arizona Blackberry TerryW: i get rough dry knuckles myblackberrypho: my neuro says its a symptom MikeG: used to be wet and sweaty but now dry as a bone! Murf: thats from dragging them MikeG: :) TerryW: lately I cant even lift a piece of firewood myblackberrypho: it is onand off the warmer the beter they get Murf: My arms have been giving out lately too billeric: I agree Terry. Lifting anything is not good Murf: It happened in front of my parents last week and they were very surprised Murf: They are still in denial Murf: sort of myblackberrypho: my family gget used to seeing my crawl up stairs and i do mean crawl Murf: you need a stair lift MikeG: Terry, did you get my PDF on low back pain exercises? myblackberrypho: I look like that guy fromshallow hal TerryW: yes mike TY Murf: it's tax deductable MikeG: yw MikeG: I do them every day and it really helps. Murf: so is an endless pool (tax deductable) TerryW: Jack Black MikeG: RIGHT ON!!! myblackberrypho: you got it MikeG: or Johnny Black! Murf: George paid 51K for mine last year Murf: Uncle Bush myblackberrypho: all i need is a pair of rubber glooves MikeG: that's great Murf! myblackberrypho: I got nothing where do I go Murf: only cost me 80K on top of that :-( MikeG: wow!!! Murf: I added 600 sq ft to the house MikeG: what will that do to your property taxes? Murf: live outside town so it will not go up loshimo1: So.... Any one have any thoughts on the upcoming results of the dutasteride trial? Murf: so they say MikeG: that would not be good in FL MikeG: loshimo1: No one is oficially publishing anything about it yet but I think it will turn up neg. JoeK has left the room. loshimo1: That's my understanding. myblackberrypho: my brother is taking something hmy brothere says it makes him throw up and gives him the runs Murf: It will be hard to tell because the dutasteride is supposed to stop the dihydrotestosterone from entering the cell MikeG: I don't think it is any different than the placebo... Murf: and killing it ( Murf: we'll have to wait on results myblackberrypho: he lives in cleveland and goes to cleveland clinic and says nothing hels him he looks terrible and is anti social Murf: something positive will come out of this ... it always does billeric: Is there any word on what the next trial will consist of? jahbundance: Gotta go. Catch y'all again sometime. Have a great day. Thanks for everything TW. myblackberrypho: later Murf: CYA jah TerryW: bye Jah Murf: three weeks on the chat again jahbundance: roger that Murf TerryW: 2 weeks jahbundance: check that TW TerryW: 19th Murf: right 16th or 17th Murf: or 10th TerryW: huh? Murf: or 19th jahbundance has left the room. myblackberrypho: weather starting to pick up may get out today TerryW: yes Murf: friggin fingers myblackberrypho: its like having frog pads myblackberrypho: or just thumbs Murf: Depression is a big thing Blackberry and we need to have humor. it is the only known cure for this :-) fl-don has left the room. jameson411: I agree Murf: Don get the punt? Murf: Alex - how are you doing physically? myblackberrypho: I know i just got over it a few weeks ago feel alot better i think having surgery recently did help Alexandre: Yes Murf...we have hope, No depression! Alexandre: I still ok, making exercises and mainly having a good mind! Murf: good you have a great goal to achieve Murf: let us know how things are going with your KD retirement home :-) Alexandre: Yes, while in this life we have to fight... Murf: I'm luck ... I could have ALS Murf: lucky myblackberrypho: I have been painting the house and cleaning up and getting ready to travel with my grandchildren Murf: That sounds like a lot of fun Murf: Grand kids are great! Alexandre: at the moment we are in the worst part of the project, we are waiting for the laws approval because the land is in a preservation area Murf: ok we'll pray for you myblackberrypho: as I was telling Terry I have learned to laugh every time i fall I picture it as a tv Bloopers and bleepers TerryW: Almost time for me to let the horses out Alexandre: it is just beside of a lake thatk gives whater for the city of Curitiba, capital state o Paraná myblackberrypho: Take care my friend Murf: Terry will you save? TerryW: I have been about every 3 min TerryW: take care blackberry Murf: ok I'm missing a chunk TerryW: glad youjoined MikeG: yep - I need to go too. Take care everyone and be safe. myblackberrypho: i am free talk by email anytime myblackberryphone@yahoo.com billeric: Bye guys, Keep upright and keep smiling! TerryW: take care mike Murf: Stay on your feet all TerryW: bye bill billeric has left the room. jameson411: bye MikeG has left the room. jameson411 has left the room. Alexandre: I have to leave now...goodf bye all!! TerryW: bye Murf: Good luck Alex loshimo1: So long everyone. Stay safe and vertical. Murf: CYA next time Alexandre has left the room. Gary_KS: Bye all. Have a nice weekend. myblackberrypho: Talk to you guys later Murf: you too Gary TerryW: c ya Murf: CYA balckberry Gary_KS has left the room.
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