Kennedy's Disease Association

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"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  03-1-2008

Topic:  Open Forum

Host: Murray Williams


BEGIN CHAT

 

Murf: Hey Terry

TerryW: Hi

Murf: What do you use for the muscle ache

TerryW: What drug?

TerryW: ULTRAM

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?

Murf: Docs-4-us

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

fl-don: gm

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

Murf: cool

TerryW: 13 stitches

TerryW: skin cancer

Murf: do you have the bolts in your neck yet?

TerryW: Not yet

Murf: LOL

TerryW: Just call me Zipper Neck

mobiusloop: scooter is a hoveraround and too heavy

Murf: was it cancer?

TerryW: yes

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

TerryW: murf

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

TerryW: hi

kellyC_: oh yeah! lol

Murf: cold up there this morning?

kellyC_: Actually its Nice here in Sask canada kinda over cast about -3

jameson411: brrrrrr

Murf: big brrrrrrr

kellyC_: lol

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

TerryW: Zythromax

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

jameson411: a-men

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)

Murf: LOL

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: positive

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: //1

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?

Murf: Ultrasound?

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.

mobiusloop: Tucson?

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

chuck: Hey

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

chuck: lol

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

Murf: sunny

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.

TerryW: lol

chuck: There

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 ?

Dean: anyone

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

Murf: food

chuck: lol

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

jameson411: oh

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?

jameson411: lol

Murf: LOL

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.

Murf: YES!!!!!

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

MikeG: yep

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.

mobiusloop: true!

Murf: even if it is to beat the next level of Mario

MikeG has left the room.

Murf: LOL

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.

Murf: why?

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: LOL

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 feet

END CHAT