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Kennedy's Disease Chat Transcript 04-5-2008
Topic: Open Forum
Host: Murray Williams
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: 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: not 50 about 15%
Murf: Will the bank take coins?
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: 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
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
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?
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
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.
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?
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
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
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
loshimo1: Hi Terry, Murf and everyone else!!
TerryW: do you have dial up or DSL or cable
myblackberrypho: I use wi fi
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
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
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?
TerryW: that is crazy
Murf: I had to call the resturant
Murf: on my cell phone
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
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
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.
billeric: I am on dial up Murf and no problem
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: And it's not like I
jameson411: i'm going to explain about kd
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
myblackberrypho: My general practioner says i need to join a gym
Murf: Say NO
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
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
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
myblackberrypho: Hot baths and showers work temp
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
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
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
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: 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 :-(
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.
Murf: CYA jah
TerryW: bye Jah
Murf: three weeks on the chat again
jahbundance: roger that Murf
TerryW: 2 weeks
jahbundance: check that TW
Murf: right 16th or 17th
Murf: or 10th
Murf: or 19th
jahbundance has left the room.
myblackberrypho: weather starting to pick up may get out today
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
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.
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.
MikeG has left the room.
jameson411 has left the room.
Alexandre: I have to leave now...goodf bye all!!
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.END CHAT