Kennedy's Disease Association

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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: 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 This email address is being protected from spambots. You need JavaScript enabled to view it.

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.