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Kennedy's Disease Chat Transcript 03-1-2008
Topic: Open Forum
Host: Murray Williams
Murf: Hey Terry
Murf: What do you use for the muscle ache
TerryW: What drug?
Murf: Ya, Aleve is not cutting it anymore
Murf: is it any good? side affects?
TerryW: ULTRAM works good for some people
TerryW: no side effects
TerryW: for me
TerryW: it is an anti-inflammitory
Murf: ok I'll ask about it
TerryW: works good for me when I feel sore alll over
Murf: as long as it works for pain
TerryW: I could not get through the day without it
Murf: I've been taking Aleve 200 gell caps 2 at a time 3-4 times a day
mobiusloop entered the room.
Murf: I got a bottle in my truck, office & kitchen
TerryW: Hi Mobi
mobiusloop: Good morning!
Murf: Hey Mobi
TerryW: I have bben having a lot of med issue lately
TerryW: at doctoors alot
Murf: You coming to the conference this year in Bethesda?
TerryW: I don't think me and Susanne are gonna make it this year
Murf: why not?
Murf: You made it to Orlando
mobiusloop: Ha, my doctor says "weell youar doing pretty good and then shows me the door
TerryW: I know, but I think we are gonna stick to western conferences
Murf: You confused him with someone that cares
TerryW: Plus we have another trip for a week right around that time to AZ
Murf: People really miss you at those you know
fl-don entered the room.
mobiusloop: Travel for me is getting tough
Murf: Hey Don
mobiusloop: Hi Don
TerryW: Hi Don
Murf: You going Mobi?
Murf: Bethesda is not far for you
mobiusloop: Nor to good. travel is out
Murf: Really why
mobiusloop: Legs getting weak
Murf: You're not in DC //10 //11
mobiusloop: I got a scooter but can't take it with me
Murf: Can't take it??
TerryW: I now have a scar on my neck about 1.5 inchhes long where they cut the scin cancer out. Looks like I have been in a knife fight
TerryW: 13 stitches
TerryW: skin cancer
Murf: do you have the bolts in your neck yet?
TerryW: Not yet
TerryW: Just call me Zipper Neck
mobiusloop: scooter is a hoveraround and too heavy
Murf: was it cancer?
fl-don: i had surgery on eye lids last monday
TerryW: they got it all they say in that area
Murf: in remission
TerryW: what for don?
mobiusloop: C treatment is getting better all the time
Murf: mobiusloop: airlines will take it and you can take it to the door of the plane. I've done it a few times now
TerryW: They also told me that I have 4 more kidney stones in my kidneys, one is 9mm in size
fl-don: to remove excess skin blocking pereferal vision
TerryW: hope it went well don
Murf: Terry you sure its not a bullet?
TerryW: Maybe I was shot and did not feell it
mobiusloop: I live in Yakima and would have to tranfer it toconnecting airline
fl-don: went well. stitches to be out this wed
Murf: I laugh but I also have a groth on my neck that I need to get taken off
Gary_KS entered the room.
Murf: mobiusloop: Airlines will do that for you
TerryW: take care of it urf
fl-don: had to talk to anesthelogist 3 times to make clear being succeptable to maligmant hypothermia
Murf: Hey Gary
MikeG entered the room.
MikeG: Good morning all
TerryW: Hi Gary & Mike
Murf: Hey Mike
Gary_KS: Good morning. Gary Uchiyama joined from Kansas City. It is a nice sunny day.
kellyC_ entered the room.
Murf: It's tough when we get other ailments
MikeG: It's beautiful in Florida too
Murf: Hey Kelly
kellyC_: Hi murf
MICH entered the room.
Murf: Hey Mich
jameson411 entered the room.
Chuck entered the room.
jameson411: morning everyone!
Murf: Chuck & James
MICH: Good Morning all
kellyC_: Good Morning to all of you!//1
Murf: Kelly you like cofffffeeeeeee
kellyC_: oh yeah! lol
Murf: cold up there this morning?
kellyC_: Actually its Nice here in Sask canada kinda over cast about -3
Murf: big brrrrrrr
TerryW: Anyone fall lately?
Murf: 72 here in Houston today
jameson411: no slips here
Murf: close but no cigar heree too
MikeG: I had a little one - went down gracefully though...
TerryW: nonne here either
MikeG: the best way!
kellyC_: Actually Terry i did my forst fall ever.. while i was standing in line @ the Bank.. i was embarrest a little my legs just got kinda weak?
MICH: Terry... funny you should ask... I fell and broke my foot yesterday
fl-don: i fell a few weeks ago. put a dent in wall from head, ouch!
Murf: Spending most of my time sitting now
kellyC_: it was ok tho
Murf: MICH: which one?
MICH: Right foot... right side of foot... had to get Xray
jameson411: ouch MICH, sry to hear that.
Murf: I don't even go to the horse pistol any more
Murf: are you in a cast?
Dean entered the room.
kellyC_: got to go Unfortunaley the ol lady needs o go to the bank.. ASAP.... ill see ya all next tim ok
Murf: I just stay off my feet for a while, Last break Dec 24th lasted two months
jameson411: bye Kelly
jameson411: stay warm
kellyC_: bye jamie
Murf: kellyC_: stay on your feet
kellyC_: ty bye all
TerryW: Hi dean
kellyC_ has left the room.
Murf: hey Dean
MICH: I feel at 9 AM... couldn't get into DR till 2... results back at 5... so no cast yet... and will try to get thru to foot dr on Monday am... for now scooting on a walker
Dean: what do you say terry
TerryW: Anyone got that bad respiatory virus this year other than me
TerryW: I thought I was going to actually die, my throat kept closing during the night
TerryW: almost called paramedics
Dean: no got the flu shot back in oct.
jameson411: wow, that is a big deal terry
Murf: MICH: I was breaking my feet (right anchle once foot twice) (left foot four times) steady.
TerryW: flu shot does not work against respiratory viruses
mobiusloop: Deep beathing excersising helps my lungs stay clear
Murf: They say the shot didn't help this year, but I got one anyway
TerryW: me also
mobiusloop: Beath out like blowing out candles
Dean: is there anything we can take for that terry
MICH: Murf.. what did you break in December,... Terry... I thought the Quest article was interesting regarding respiration... seemed like it said these are all the options but we don't know if it works for muscular dystrophy
TerryW: 5 day treatment
TerryW: 2 pills the first day
fl-don: beer helps
TerryW: one each day after
TerryW: Knocked it right out
Murf: MICH: left foot and index toe
TerryW: but youo have to get the meds early
TerryW: I got them the 2nd day
MikeG: Terry, I think my brother had the same thing - not good.
Murf: I just make sure the bones are straight and keep the swelling down
TerryW: I really thought I was gonna be a gonner
TerryW: scared me
Dean: Terry should we have the Zythromaz on hand if that takes place.
MikeG: Sorry - that would be scary!
Murf: What are tyou going to need to do Terry?
TerryW: I could not get anything tocome up from lungs, to weak.
Murf: You need to take to Kurt once a year!!!
TerryW: i had to bend over upside down and beat on my chest to knock it loose and cough
Murf: Terry they have cough machines now
TerryW: then I got some
Murf: Advertized in Quest
TerryW: I have seen that
Murf: You need one
Murf: just in case
jameson411: that is a terrifying story
TerryW: the doc told mme that that stuff mucinex does not work
fl-don: gotta go. u all take care, bye
Murf: it would be cheap if it saves your life
TerryW: bye don
jameson411: bye don
Murf: bye Don
fl-don has left the room.
TerryW: Murf sometime I wonder if I wanna live
TerryW: tired of all the medical issues
Murf: Don't give me that!! I deal with it from TJ all the time
mobiusloop: Yes they seem to pile up
TerryW: That is why i keep these thought to myself
jameson411: I can't imagine
MikeG: you have to hang in there - a cure is right around the corner
Murf: I'm fighting for every minute GOD gives me
Dean: Iwe all know what you are going throigh. Hang in there.
mobiusloop: But keep a positive thought
TerryW: I try
Murf: Just do it (Nike)
mobiusloop: Thjere is something to mind over matter
Murf: Yes there is
jameson411: Terry, you and the KDA has made a very large positive impact on me
MikeG: We all need you and Susanne needs you too!
TerryW: I know, I take it day by day
jameson411: My Dr asked how I was doing with the KD and my first thought was
Murf: I have two full time jobs and have to do every thing for myselfe. I get really tierd
jameson411: due to the support and info i get from the KDA
Murf: got to keep the mind going so now I'm going to take an investment course
MikeG: I bet you do Murf - at least most of us have someone to help us...
jameson411: Murf, i thought you were retired
mobiusloop: Only one Dr. here in Yakima ever heard of KD
Murf: I phone and it costs money to get simple things done but I'm do'in ok
Dean: I know that we get support and that does help, but we all need a break through to help us all.
Murf: jameson411: retarded
TerryW: I am just having a bad time dealing with these cronic kidney stones, Level 10 pain and they can't seem to find the cause. I have high acid levels in urine. These are like time bombs waiting togo off atanytime
jameson411: lol murf
TerryW: and its not short lived pain, it can go on at that level for days if you dont pass them
Murf: Terry what can they do about the stones?
jameson411: terry, you are dealing with a mountain of medical issues...
TerryW: I am trying a liquid drug called Citrite, to try to see if they will disolve
MICH: Mobiusloop...I lived in the NW... Portland for 25 years... and I had to come to Utah and Arizona before I actually met anyone with KD face to face
jameson411: like a modern day Job.
Murf: as a medical experiment
Dean: I have the stone issue to and as soon as I feel that I am have an issue I start drinking alot of water.
Murf: I'm a petrie dish
TerryW: No docs perscribe this for gout
Murf: sorry //11
MICH: Mob... no Sun City
TerryW: My urine PH is 5.3 Acidic, should be around 7
Murf: Humor is great medicine
TerryW: The citrite raises the PH
Murf: What is cuasing it?
mobiusloop: Any diet recommendations?
TerryW: don't know
TerryW: I have stopped cokes
Murf: lemons & limes?
TerryW: and PH is still low
Dean: not sure what my levels are but drink a lot of ho2.
mobiusloop: Real dietitions are hard to find
TerryW: been drinking a lot
TerryW: water LOL
Murf: me too
Alexandre entered the room.
TerryW: dehydradatiion can cause it
Alexandre has left the room.
TerryW: Hi alex
Murf: Hey Alex hows Brazil
mobiusloop: Hi Alex
chuck entered the room.
TerryW: hi chuck
Alexandre entered the room.
mobiusloop: Hi Chuck
Dean: A person my wife works with does the lemons & limes to she thinmks it works for her
TerryW: Yes Lemons have natural Citrite
chuck: Hi All from Graande Prairie
Murf: Dean: no kidding (Iwas joking)
TerryW: I have been drinking real Lemonade for the past year because I heard about it but they still formed
Murf: chuck: TX?
TerryW: every day
Alexandre: Good morning from Brazil folks!
chuck: No silly Canada
Murf: Hey Alex, hows th3e weather?
TerryW: enough about my med issues
Murf: chuck: I thought so but had to ask
mobiusloop: Good to hear from people in distant places
jameson411: I'm getting an MRI on Monday :-)
MICH: Chuck... I thought you were in WV?
Murf: chuck: G.P. TX is just up the road from here
TerryW: what for Jameson
Alexandre: Here is fine, nice cloudy day, and there?
chuck: Any Kristiansons living there Murf???
jameson411: my bells palsy is only about 30% better.
Murf: 72 in Houston today
Chuck: I am a Chuck from WV. I was the first one on today. I am Charlie Rannells
mobiusloop: Cool in Yakima, Washington
TerryW: oh :(
jameson411: so they will take a look in my head to make sure the nerve is not inflamed
Murf: chuck: there has to be
TerryW: hope it goes well
chuck: Chuck I will change my id next time ok
jameson411: the minor face paralysis is only a nusance
jameson411: i'm excited for the MRI though
jameson411: never had one
chuck: I will be blue today or right away ok?
TerryW: MRI's are easy
Murf: jameson411: don't fall asleep
jameson411: They might give me pictures of my brain and then I can show them to my students
jameson411: how cool would that be.
jameson411: And I can teach them how MRIs work
MICH: Utah is going to go up to 60, then storm, and back sown to 30's
Murf: jameson411: no comment ... oops //11
TerryW: I have to go everyone
jameson411: common, my students will get to see how big and active my brain is.... they'll all be so impressed ;-)
Murf: take care Terry
TerryW: talk to you all next time
chuck: Bye for now
MICH: Terry, have a good week!
TerryW has left the room.
Alexandre: Good morning Terry, Did you received my last e-mail, about my medical prescription here in Brazil?
jameson411: bye terry, hope things go better
chuck: So Whats new????????
Murf: Alexandre: yes we did Alex
Alexandre: something to tell me about?
jameson411: Alex, what is it?
Murf: please slap my memory
Alexandre: they are some complementary food
Murf: I know he sent it out
Murf: yes. I still use vitamine B
Murf: every little thing may help you never know
MICH: Alex... Brazil's food is great as Salt lake keeps getting more and more Brazilian restaurants
Murf: what works for one may or may not work for some one else
Alexandre: Like 3 Indol Cabinol, DHEA 25, Omega 3 and Melatonina
Murf: I try lots of things to see if swomething might work
jameson411: There is a huge Brazilian population in Danbury, CT.
jameson411: i enjoy the food also
mobiusloop: My Dr. wont prescribe anything
Murf: DHEA 25 sound promissing
jameson411: When Brazil won the world cup, they held parades down main street
jameson411: It was exciting :-)
Murf: all of this is years away
Dean: i do not think there is anything out there that we can take that helps
Murf: but the sooner they start the sooner we get there
jameson411: But anything is worth a try
Alexandre: Yes, Brazil it is a nice country, in spite of the federal government corruption!
jameson411: If we do nothing, our conditions will progress
Dean: i hear you
Murf: think positive now
mobiusloop: Trying is better than nothing
jameson411: Alex, your country is not alone
Murf: it is
Dean: thats right
Murf: I like it here
jameson411: we have corruption too, but it is done out in the open here
jameson411: drug companies and insurance companies "donate" millions to political campaines
Murf: Just look at the election LOL
Dean: nih needs to put something out there
jameson411: Democrate, Republican, it makes no difference
mobiusloop: It's upto the people
jameson411: they are all the same
Murf: they may we're trying a drug now
Alexandre: I intend to be with you in the next Conference in Baltimore, I liked very much to participate in Las Vegas!
Murf: Alexandre: great !
jameson411: the next conference is in Balt?!?!
jameson411: that is only 6 hours by car for me
Dean: i know but deos anyone know whats going on with that ?
mobiusloop: Is there a source we can go to to get The latest info?
Alexandre: I receivd some information that the next conference will be in Baltimore region
Murf: it will probably be at the BWI Marriott Nov 18 or 19th
Murf: Baltimore MD
Murf: Airport Marriott
mobiusloop: Too far for me!
Murf: airline will help
Murf: so will we
Alexandre: I would like very much to visit this region, as I know, Baltimore is a nice city!
Murf: good crab
Dean: What about the current study any info to the poeple that as kenndy siease
mobiusloop: Long term sitting and by back realy starts to hurt
Murf: Dean the study is officially over in June of this year
chuck: Mob how about standing Ouch!!
Alexandre: That's a good new!!!!
Murf: we have Kurt Fischbeck Angela & alison on three different chats coming up
Dean: will there be a report to the current list of poeple thats on the NIH list
mobiusloop: Hope they have soom good news
Murf: It will take until Dec 08 the run all 50 opeople threw
MikeG: mobiusloop: I have back pain too. I had therapy and was given some exercises that seem to help.
Murf: and probable another 6-12 months to get the results
Alexandre: Wonderful, Dr. Fischbeck is a nice person, he ansewred my e-mail
mobiusloop: Lumbar discs are gone
jameson411: I only have back pain when I have to shovel 8 inches of snow :-)
Murf: We can ask those questions in the up coming chats
jameson411: I am lucky
Murf: jameson411: me too I have KD
Dean: does Fischbeck say the they are close for a cure
Murf: could be ALS
MikeG: They put me on a traction table and pulled my lower back with about 40 - 60 pounds.
Murf: Dean: close is relative isn't it?
jameson411: Murf: ALS? you?
Dean: for all
Alexandre: He gave me his opinion about my medical prescription
Murf: No I'm luck I have KD because it coulde have been ALS
Murf: Alexandre: was it good?
jameson411: anyone heard from Darwin?
Murf: Last chat he wasa here
mobiusloop: I need a brace that will create traction. so far I have't found one
Alexandre: He said that the DHEA is subject of studies in USA
Murf: mobiusloop: where?
Gary_KS has left the room.
chuck: His mother says the progression is slowing
chuck: About Darwyn
Gary_KS entered the room.
Murf: yes there are many labs working on many prommissing things
mobiusloop: Hi Gary. any news?
Alexandre: so we can have a hope!!!
Gary_KS: I got back. I was kicked out. :-(
Murf: we could very well have a cure in our life time
jameson411: how great would that be...
Murf: I didn't think it was possible until last year
jameson411: i would dance in the street if a cure came along
jameson411: or even a treatment
mobiusloop: Sounds good but at 81 they better hurry up!
Murf: I don't like to get my hopes up too high
Dean: murf do you have inside info?
Gary_KS: Mob: I probably was kicked out because I didn't type at all.
Alexandre: It is good to talk to people wich have similar problems
Murf: Nothing you guys have not heard
Murf: and nothing that is not public info
jameson411: Alex: it is, i agree
jameson411: How old are you Alex?
Dean: i am not in the program an out of the loop.
jameson411: I am 34
mobiusloop: Again, at 81 I'm ready to try anything
Murf: That's why I'm always on the chat and any of you can call or e-mail me anytime
Alexandre: I am 56, but in spite KD, I am fine
jameson411: Alex: your english is very good.
mobiusloop: But Dr's are chicken
Murf: I just turned 52
jameson411: Same here
Murf: better than mine!!
chuck: I am 50
Gary_KS: I am 51.
Alexandre: I have done a chsck-up in the begining of this here and everything is OK
jameson411: guess i'm the young guy in the room
MICH: I'm a young 61
jameson411: I still look at my agine in fractions... 34 3/4
Murf: Alexandre: you're doing great and I wait to see you this year again
jameson411: that you are MICH :-)
Murf: I was there once
Alexandre: I thing the most important thing for us, is keep our minds OK, NO DEPRESSION!!
Chuck: Chuck from TX - you could go by young Chuck and me old Chuck from WV. I am 80.
MikeG: That's right - I'd much rather have KD than many other diseases of the mind.
MikeG: like alzheimers
Alexandre: FAITH IN GOD'S GRACE< IS VERY IMPORTANT!!!
Murf: Hey Mike. did Sacha call yesterday?
MikeG: Yes and I called Raz but he never returned my message
MikeG: and his email bounced... :(
Murf: we'll get it together
jameson411: Again Alex, i agree with you
Alexandre: We have to keep our minds occupied, is important to have a goal to reach!!!
Murf: thats right
MikeG: well, I gotta go. Until next time - everyone take care.
Murf: even if it is to beat the next level of Mario
MikeG has left the room.
Chuck: "Old" Chuck says bye and see you later.
Alexandre: Till the next time brothers!!!
mobiusloop: Time to have breakfast--Bye
Murf: C ya old cHUCK
jameson411: keeping an active mind.. that is why i picked up Chess
Dean: Murf what do you know that someone else does not ?
Chuck has left the room.
Murf: not a thing !
Gary_KS: Bye all.
mobiusloop has left the room.
Murf: lol even lees
Gary_KS has left the room.
Alexandre: I have lunched already, here is 01:30pm
Murf: Lunch here too almost
jameson411: good bye all... till next time
Murf: C ya James
jameson411 has left the room.
Dean: we are all looking for answers
Alexandre: Good bye, folks
Murf: Me too but we need to be patient
Murf: C ya Alex
Dean: we are running out of time
Murf: more people are working on it than ever
Alexandre has left the room.
Dean: thats good news
Murf: we are only 700 or soo
Murf: and I know 3 labs here and one in Canada that is working had to save us
Dean: what about nih
Murf: we just need to keep them in Money
Murf: Kurt is NIH
MICH: Do those labs include fruit flies, mice and ....??
Murf: most have come from his lab
Murf: MICH: yes all and all are sharing data
Dean: when do you think people will be used
Murf: we need to fundraise to keep the las working on KD
Murf: Dean: we are nearing the end of a 2 yr study now
Dean: the gov;t needs to step up to the plate with more funding
Murf: don't hold your breath
Murf: they do fund but we are important to give the seed Grants
Dean: how close is someone to something?
Murf: to young researchers so they can apply to MDA & Gov for more
MICH: Youall have good week... I litterly have to start scooting... Murf were all those foot injuries either fractures, breaks of pulled something?
Dean: nice chatting to everyone until the next time thank you
Murf: Once something is suspected and there are lots, we need to get studies done and the FDA approval before the drug can be marketed
Murf: MICH: no compound fractures
Murf: I now have one bent toe but things could be worse
Dean: that may take years but anything is a good holp
Murf: at lkeast we can see the light
Murf: long tunnel but you never know what will happen tomorrow
Murf: the next few chats will be very interesting
MICH: thanks Murf... good chat
MICH has left the room.
Murf: C Y'aall
Murf: stay on your feetEND CHAT