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Kennedy's Disease Chat Transcript 07-07-2007
Topic: Open Forum
Host: Murray Williams
You are in Kennedy's Disease Chat.
johnweeb entered the room.
Murf: Morning John
johnweeb: Good Morning
Murf: How's the weather in CA?
Murf: Wet and hot in Houston
johnweeb: Hot We are just back from France and Italy. We spent a month there driving around and had a great time. And you?
Bruce entered the room.
Murf: Wow, how'd you get along?
Murf: Morning Bruce
Bruce: John, are you guys sizzling again in California?
Murf: I've been putting in a pool but we only got the hole dug ... now I have a pond in the back yard
johnweeb: Very well actually. With the car Susan was able to drop me off at each door so there wasn't a lot of walking for me to do. My only problem was my head drop which continues to be by far my major problem.
Bruce: I heard that Texas is finally getting a little reprieve from the rain. Is that true?
Murf: Maybe next wednesday it will be over they say
Murf: TJ got a few inches last night and his bridge is flooded
MICH entered the room.
Murf: Morning Mich
Bruce: What has become of that oil spill floating downriver towards Tulsa?
Murf: John - what can we do for head drop?
Bruce: Morning Eric
Dart! entered the room.
Bruce: Mornig Dart
Dart!1857 entered the room.
Murf: It's still floating
MICH: Morning Murf, Bruce, Dart and John
Murf: Morning Darts
Bruce: How are things in Minnesota this morning?
Dart!1857: Good morning All, from just one
johnweeb: Good question - We are exploring options for this head problem. Does anyone out there have any suggestions? I use a collar when I'm not eating but it still doesn't get my head up to a nice leve.
johnweeb: Who lives in Minnesota?
Bruce: John, I came in late. What is the concern/problem?
Murf: John is having problem with head drop, anyone have any ideas?
Murf: I guess neck strength
Murf: I know mine is very week but I don't have the head drop yet
Bruce: John, sorry, I thought Dart lived in MN for some reason. It must be one of those old-timers kind of thing.
Gopher entered the room.
Murf: Monring Gopher!!
emeyerth entered the room.
Bruce: Morning Gopher. How are things in Minnesota this morning?
Gopher: Good Morning
Bruce: Morning Ed
Murf: morning Ed
Dart!1857: A very interesting problem, Johnweeb! I have tthe same problem, and when I perfect my idea, I will be letting y'all know. And this Dart is in Canada!.
emeyerth: good morning everyoe
Gopher: Hot and Humid
emeyerth: wet here in texas
Bruce: We are also hot and humid. I am ready for a break.
Murf: big time!
MICH: Record heat in Utah
Murf: Southern US is going tropical
Gopher: We may hit 100 today
Bruce: For MN, that is hot
Gopher: Yes, it is...but last night was cool and we just got a convertible...Pt Cruiser
johnweeb: Who lives in MN? We are travelling there the first week in August.
MikeG entered the room.
Bruce: Ed. I haven't heard from you in a week or two. How are you doing?
Murf: Hey Mike - you hot too?
Bruce: Golpher is in MN
MikeG: Greetings from hot and sunny FLA
Gary_KS entered the room.
emeyerth: Pretty well, I got back from Europe and started classes the next day
Murf: Morning Gary
Bruce: Are you teaching all summer?
emeyerth: so I have been pretty busy
Bruce: Got it
MikeG: yep, Murray - and humid too!
emeyerth: Got to pay those bills!!
Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.
Gopher: Europe?? Vacation??
Murf: I heard that
MikeG: just like you, I'm sure.
emeyerth: Gopher, yes and no
Murf: John - is it worse in the heat?
emeyerth: I went to the Gordon Conference on CAG diseases in France, and then visited my daughter who spent the past year in Germany
DarwynP entered the room.
emeyerth: We went to Florence, Rome and Berlin
Murf: Morning Darwyn How are you doing!!
DarwynP: Hi all.
emeyerth: We can officially start the chat, I am Ed Meyertholen - and today's chat topic is open - I guess that means we can talk about anything!!
DarwynP: I feel okay right now.
MikeG: Ed, did you learn anything new in France?
emeyerth: NOt sure there were any real breakthroughs ...
Bruce: Ed, did anything exciting or innovative come out of the Gordon Conference presentations?
emeyerth: but the confernence was very interesting in that it included all the CAG repeat diseases.
Sammy entered the room.
DarwynP: I've had a rough go last couple months though.
Murf: Good I got an e-mail from a friend of yours how is the wedding
Sammy: morning folks
MICH: The Gordon Conference... was it named after a Dr. Gordon?
Bruce: What has been happening Darwyn?
Bruce: Morning Sammy
emeyerth: If I had to mention one thing that seemed 'popular', I would say that there is a great emphasis on how the mutated protein causes the cells to die
emeyerth: There are a lot of similar findings across the different diseases.
DarwynP: Well, lots Bruce. I'm getting symptoms that are ussually only ALS.
Bruce: Is the assumption still the same as reported at the KDA conference?
emeyerth: I should add that the KDA was cited often by 'our' researchers - Drs. Merry, Fischbeck, Lieberman and Taylor
Gopher: Diseases..huntingdon, ALS KDA
JoeK entered the room.
MICH: How many different CAG disease are there?
emeyerth: Bruce, I think so. The cell had problems destroying the mutated protein and this then seem to clog the works
MikeG: Is the cell 'garbage collection' issue the swame for all CAG repeat diseases?
emeyerth: Mike, yes
fl-don entered the room.
fl-don: gm all
Bruce: Morning Don
Murf: Great Ed
Murf: Morning Joe & Don
emeyerth: Many of the studies dealt with ways to unclog the enzymes that destroy the proteins and when they do, the cells do not die
DarwynP: Beside the fact that I can't walk at all, my breathing is about 25% of normal. To the point my doctors say I need a Trek and permanent ventalation assistance.
Gopher: Really....is that possible??
MikeG: Are most of these CAG repeat diseases on the MDA list?
Dart!1857: johnweeb: , I hear you, and will do. It is no fun, right? I will be back to you..
Bruce: Darwyn, I am sorry to hear about all of your problems.
emeyerth: MIke, I do not know? Do you know if Huntington's Disease is an MDA disease (I did not thnk so, but that is a guess
emeyerth: Gopher, if that was to me, it is certainly possible. I think one of the ways to treat KD would be to find a chemical that prevents the clogging, and that may save the cells
Bruce: Ed, has much of the research focused moved from looking at the cause/effect to what could be used to unclog?
MikeG: How many diseases are CAG repeat related?
Gopher: Yes, ED Any more info on cells not dying?
emeyerth: Mike, there are 9, I think
DarwynP: All Doctors including Fischbeck and DiProspero have never seen Kennedy progress this fast or affect the breathng this severly. As it has only been a year and a half since I was Diagnosed.
MikeG: So if a cure is found for one, does that mean they all will benefit?
emeyerth: Bruce, I think that there is work in that direction, but I think a real treatment is a few years away. They would have to find a drug, and then test it and that alone takes several years.
Bruce: Well, at least you had one of the best doctors look at you.
emeyerth: Mke, possibly
DarwynP: Yes, I was very impressed by all the work they did on me!!
emeyerth: KD is unique in that it is the only CAG disease in which we know the real function of the affected protein
Bruce: Ecplain that more please
emeyerth: so it may be possible to design a treatment for KD using that info (that is what the trial is testing) and that will be specific for KD
emeyerth: The affected protein in KD is the androgen receptor, the protein that mediates ALL actions of testosterone in all cells. No androgen receptor and testosterone has no affect in any cells.
Gopher: I think we can thank the KD Association for learning the function of affected protein, am I right, ED?
emeyerth: In other CAG diseases, the real function of the protein is not known.
Mountain_Man entered the room.
MikeG: Ed, have you heard anything positive re Dutasteride Trial?
emeyerth: FOr example, the most famous CAG disease is Huntington's Disease - they have identified the affected protein but they do not know what it normally does in cells
Murf: Morning TJ
Mountain_Man: MORNING ALL
emeyerth: Gopher, yes, many of the presentations at the meeting were based on research funded by the KDA
emeyerth: The kda does get a good bang for its research buck, in my opinion
Gopher: We are so grateful for KDA!!
emeyerth: MIke, there is no info on the trial
Murf: There will be at the conference
Bruce: In fact, we have already had several inquiries from researchers as to when we will be asking for grant proposals.
emeyerth: I did hear that after everyone has been through the first year checkup, they may look at the overall data for any big effects
Murf: We need to pick up the fundraising efforts
JoeK has left the room.
johnweeb: KDA Member News: My brother, Gary Wiebusch in Minneapolis, has cancer of the throat and lungs. Please keep in your thoughts and prayers
emeyerth: we will not get any specific info on any individual, it is just a precaution to make sure the drug is not have any adverse affects
Bruce: If I remember correctly, they do not plan on publishing any information on the trial for some time.
Murf: You bet John
Mountain_Man: Is there any way we could check and see how many items have been collected for the auction?
emeyerth: Bruce, yes, not till after the econd year chekcups
MikeG: Sure thing, John - will do.
johnweeb: I am part of the KDA NIH study. Of course I don't know whether I am taking the medication or the placebo, but I can say that I am walking better.
Murf: TJ none
fl-don: mm, are you in charge of the auction?
Mountain_Man: What do you mean Murf
fl-don: in vegas?
TerryW entered the room.
TerryW: Hello all
Murf: Nothing has been sent to me to haul to Vegas
Gopher: Are we suppose to know what we are going to bring for Auction...I am assuming in Las Vegas
Murf: Hey terry
fl-don: ill bring something to vegas 4 the auction
Bruce: Morning Terry. How are the puppies doing this mourning?
MikeG: Hi Terry
Mountain_Man: Well Don, we had asked my brother to be the auctioneer, but I don't want him traveling there at his expense if there isn't anything to auction.
Murf: Most people will bring things
emeyerth: hello terry
Murf: Those that will not attend have been asked to send something
DarwynP: According to Dr. Nick D. most people on the study have stayed the same or improved.
TerryW: I just wanted to pop in and say hi to everyone and let them know that they will be upgrading the CHAT program. I will be sending a e-mail to everyone BECAUSE YOU WILL HAVE TO RE_REGISTER before you use the upgraded chat utility.
Gopher: We haven't registered yet...but will..do we know how many are attending?
Mountain_Man: Thats funny the Dr. would say that since only half got the drug
fl-don: i wouldnt miss vegas for anything
Bruce: Terry, could you take a moment and explain what the new enhanced version of the chat is about?
MikeG: When will this happen Terry?
Mountain_Man: Sounds irresponsible to me
Murf: Lots of people say they are attending but we have few registrations
TerryW: This will happen probably beore the next chat on July 21
fl-don: thought only need to register by sept?
norminstormin entered the room.
Gopher: Any suggestions for auction items?
TerryW: The new chat will be faster and is supposed to correct knocking people out of the chat room. The new chat uses the FLASH program and not JAVA
TerryW: I will put more details in an upcoming e-mail
Bruce: Morning Norminstormin
MikeG: Thanks, Terry
johnweeb: Maybe Dr. D wasn't irresponsible. Maybe those on placebo stayed the same and those on the medication improved. My knees used to turn to rubber and not they don't. Hopefully I'm on the medication.
norminstormin: good morning
DarwynP: I think he was just refering to an overall average. I was the only one have big deterioration.
Gopher: SOOOOO....Terry, I hope yo walkus through...just got a new computer yesterday and had to do somethings to get on today, but no problems...anything new makes me nervous
TerryW: Sorry I can't stay and chat longer but we have 2 new puppies that are keeping my hands full and a baby Horse due within the next week
fl-don: cya in vegas t
TerryW: Yes Gopher I will be available to help you
MICH: What kind of puppies
DarwynP: So, I was discontinued in case it was adversally affecting me and cuasing my breathing issue.
TerryW: Peeranees & Lab Mix
MikeG: take care Terry.
TerryW: Can get to 125 lbs
Sammy: Thanks Terry for supporting the digital chatter highway.
emeyerth: Terry, those pupppies seem like horses!!
norminstormin: i come in here ot check if anyone on first time someones been on
TerryW: If i fall they can just drag me back home LOL
Sammy: Sammy's our adopted greyhound - big dogs are great - Terry's sound like great pooches.
Murf: I just got a new dog too. whippet / Black Lab
TerryW: Normin it looks like you hit the right time this time
MikeG: REAL service dogs.
Bruce: Norminstormin. Do you have Kennedy's Disease?
norminstormin: sure did
norminstormin: yes i do
TerryW: cool murf
norminstormin: just diagnosed in january
TerryW: I have got to run, talk to you all on the 21st
emeyerth: bye terry
Murf: Take care Terry
Bruce: Everyone on here has KD or is living with someone with KD
Bruce: Normin - have you joined the KDA?
TerryW has left the room.
DarwynP: norm we chat twice a month.
norminstormin: i'm new to this don't really know much about it yet
Mountain_Man: Has anyone heard from John Coakley, it's been a long time since he's been on the chat?
Murf: norminstormin: and there are some Canadians here too
Sammy: For sure eh - up here in Toronto.
Bruce: John is busy moving to a new house. He is very busy in fact selling the old one, buying the new one, and moving.
Murf: TJ - he just moved house so he's sorting 45 yrs of life
Gopher: Norminstormin, the KDA is a wonderful source to learn about KDA and how to live with it!!
norminstormin: i read on it a bit
Murf: 1 in Houston TX
Murf: testing testing ...
Bruce: Ed, has the explanation of the defect better helped focus research attention. Rifle versus shotgun ...
Mountain_Man has left the room.
emeyerth: bruce, It popens up other avenues of treatment, or possible treatments
emeyerth: I wish I could type
emeyerth: or spell
Bruce: Join the club
Murf: who worries
MikeG: we know what you mean
emeyerth: FOr example, it is well understood that the androgen receptor protein needs to enter the nucleus to cause the cells to die
norminstormin: my legs are so wobbly now from it i have to walk with a cane now is that normal?
emeyerth: so there is quite a bit of research on trying to find drugs that prevent it from going there
fl-don: been using a cane 4 years
emeyerth: and this may lead to treatments, not really cures but prevention
MikeG: norminstormin: how old are you ?
johnweeb: Yes, I used a cain for a few years and not because of balance issues and the head drop, I use a walker. It works well.
Bruce: Ed, I sense a level of optimism from the researchers in recent months. Not only because of the trial, but because of their focus. I also sense that more postdocs are focusing on KD research. How do you feel about that?
Murf: norminstormin: Cane should be ok for a few years then walker/chair. this is what happened to me
norminstormin: 44 on monday
MikeG: have you had the KD blood test yet?
norminstormin: i broke my foot a few months ago from falling
emeyerth: Bruce, I am not sure how to address that - I would say that the amount of KD specific research seems to be large despite the low incidence of the disease
MikeG: Most of us have broken bones from falling.
Bruce: Mormin, yes ... cane is helpful and then eventually a walker and perhaps a wheelchair. Just keep exercising (using the smart exercises approved by some of our neurologists) to keep the motor neurons firing and muscles stimulated.
Sammy: Normin - same thing for me. Diagnosed in 2005 in mid 40's. Use a walking stick/ cane and just pause for a bit when my right knee gets too wobbly. Recovering from the broken ankle in 2006 - when I tried to push too much - reminded me I was going to have to pause & allow the joints to rebound a bit.
Murf: I'm 51 now and have had a chair for 5 years I still use a cane but I have 3 chairs too and one walker
DarwynP: Happy Birthday norm. I turn 42 in Oct.
norminstormin: thank yuo
emeyerth: Part of this, I feel, is the fact that the functionf of the protein is known. The meeting in France was dominated by the Huntington's reserchers, very typical, but the KDers had at least three major talks and many posters
MikeG: I'm 59 and have been using a cane for about 7 or 8 years.
Bruce: This is all positive in my opinion
Sammy: Bruce is right - the exercise guide is very helpful - a good range of ideas.
johnweeb: What are the "smart exercises"?
emeyerth: For a rare disease, I feel that we have a good group of reseachers who specialize on KD
Bruce: The KDA has a Smart Exercise guide available on the web site.
Murf: WOW that was well worth going when is the next one?
norminstormin: my voice is breaking up now will i lose it?
emeyerth: and we also benefit (or may benefit) from research on the other diseases, such as Huntingtons
johnweeb: Thanks - I'll take a look
Bruce: It is a series of different exercises and types of exercises for use by people with KD.
emeyerth: Murf, is that to me?
Dart! has left the room.
DarwynP: you shouldn't loose it, but it will get weaker
Murf: norminstormin: no mine breaks all the time. Just rest it
Bruce: John, there are some neck exercises which I have found to be very helpful.
norminstormin: oh ok thank you
Murf: emeyerth: yup
johnweeb: Bruce - Are these neck exercises included in the KDA site?
emeyerth: Norminstormin, I teach for a living and lose my voice at the biginning of every semester -0 it always comes back,.
Bruce: I believe so, but I will check right now
emeyerth: Muuf, the next meeting will be in 2007 - but the bad news is that it will be in Italy
emeyerth: so I may have to drag myself there if I get to attend
Murf: we'll talk //2
MikeG: norminstormin: you'll probably get nasal but won't lose it completely. What usually happens is the tounge gets tired and won't allow you to pronounce as well.
norminstormin: that's a relief i thought i'd lose it
johnweeb: Italy - how tasty
emeyerth: yes, it is a tough life
Murf: norminstormin: If we all have to have something ... I feel pretty lucky to have KDA. There is a lot worst out there
emeyerth: On a side note, my daughter is spending the summer in Kurt Fischbeck's lab doing research on KD
Murf: emeyerth: is that insider trading?
norminstormin: since i 've been diagnosed i ' ve had alot of support with friends and family
emeyerth: could be!
Murf: go for it!!
emeyerth: but she is much smarted that I
johnweeb: Ed - What a great opportunity for your daughter and for us.
Gopher: That's neat, ED
Murf: no kidding
MikeG: you're so modest...
Bruce: John, no, the neck exercises are not included (http://www.kennedysdisease.org/disc_exercise_tips.html). I will atempt to write them up. Give me your email address and I will send them to you after I am done.
emeyerth: not really, she is really smart
DarwynP: Makes it alot easier with support.
MikeG: Ed, is she coming to the conference in Vegas?
Murf: emeyerth: she came from good stock?
fl-don has left the room.
Murf: will she talk?
emeyerth: She wants to but she has classes - the lab is trying to convince her that classes are not that important and she should go
Bruce: Normin, support from family and friends is what keeps us going
Murf: we still need two speakers
MikeG: yep, my son is the same way. This next generation is really going to take us places...
Gary_KS has left the room.
norminstormin: especially where i work
emeyerth: I expect she will make it - not sure she wants to speak!! I have not heard back from the speech/swallowing person yet
emeyerth: I hope that she will be able to come
MikeG: I hope she will be there.
Gary_KS entered the room.
emeyerth: Actually, there is a possibility that my brother and my sister may come to the meeting
Gopher: Murf, one suggestions...do a few of the exercises as part of Conference...we all needed some more exercise, it was hard to sit that long...very intersting, but a hard sit.
Murf: I think I have Joe our NIH therapist talked into it
emeyerth: neither has the KD gene but they may come just to see me!!
Gary_KS: I came back. I always lose the connection about 40-45 minutes after the chat. :-(
Bruce: Dart and John, I wrote down you addresses and will put something together as soon as I can
Murf: Gopher: I'll tell him you need him there, then he can't refuse !! //4
Sammy: Any canadian researchers speaking at the conference?
emeyerth: ONe other thing about the CAG meeting, I have to say that the KD reserchers who were there were also quite graceful on the dancefloor (but I will not name names)!!
Murf: Gary_KS: you on dial up?
johnweeb: Thanks Bruce, I look forward to hearing from you.
MikeG: Gary, do you lose the connection while you're doing something like changing windows or something?
Bruce: Gary, we are hoping the new upgrade to chat that will be installed next week will help. Terry will be sending out info this week on it.
MICH: Speaking of exercise...one doctor told me maybe oxygen would be good between daily tasks so I wouldn't get out of breath but couldn't this over exercise the lung muscles?
Murf: Sammy: maybe Dr. Lenore K. Beitel fom Monteal. Thats where our Canadian Donations go to her lab
Gopher: Bruce, can the exercises be put on the KDA website? We have a copy, but now that I know we can't make a copy we will probably lose. Roger checks it from time to time...right now back issues
Bruce: Mich, my neurologist recommends breathing and coughing exercise ( a few are in the guide and I do a few others). He feels it is important to breathe properly
Bruce: Golpher, I will first work on the neck exercise and then try to add them afterwards. Before I add them, I will need our SRB to review them.
emeyerth: MICH, I am not sure oxygen would help, at least not at sea level - I ahve not seen any research that indicates that there is any defect in getting oxygen in KD patients, unless there is another problem in addition to the KD (although I could be wrong).. I do not think that breathing oxygen would harm you, though
Murf: emeyerth: at least 21%
johnweeb: Bruce - My voice is weaker now and I wonder if it has to do with the diaphram muscles. Do any of these exercises address the diaphram?
Bruce: As we become older and more seditary, we do not breathe as deep. This becomes an issue over time.
Bruce: John, yes, the deep breathing is especially helpful in restoring the normal function and increasing your energy.
DarwynP: For me, it is my diaphram that has weakend too much!
Gary_KS: Mike, no, I don't do anything. Bruce, thank you. I hope the new char is better.
Bruce: Practicing coughing is also very important. It will help keep your lungs free and helps if you have something stuck in the throat.
Sammy: Thanks Murf - falling behind here - the connection is slow. Is she with McGill University medical? Do you know what type of research? My brother was a McGill grad - he and I (born in Montreal) wouldn't mind directing some donation $'s towards Montreal.
Dart!1857: Bruce: This is the first time that I have noticed reference to breaathing problems, and look forward to learning what you knw, thanks very much.
Murf: DarwynP: are you on O2 or just air?
DarwynP: I use all of my chest muscles to breathe
Bruce: Sammy, there is info on the web site about donating to KD research in Canada
Sammy: Sounds good - thanks Bruce.
emeyerth: Sammy, I think she is at McGill and she does research specifically with teh androgen receptor
Bruce: Darwyn, look at the exercise guide. Check muscles are not as helpful as the diaphragm muscles ... that is deep breathing.
DarwynP: Just air right now. My blood oxygen is just above 60% which you have to be bellow for oxygen to be covered my medical.
emeyerth: She is part of a large group (I think there is special name for her group, but I do not remember what it is)
Dart!1857: The breathing problem gives special meaning to the saying "use it or lose it"!! Good counsel, to work with the problem early.
Murf: Sammy: Yes she looks at KDA
emeyerth: but they all work on the androgen receptor, that is why she is interested in KD
Bruce: I have to run. Thanks to everyone for joining us today. Stay healthy and upright ... and cool, if possible.
Sammy: Thanks Murf. I'll mention the McGill connection to my brother. I him a call to see if he's followed up on the genetic testing....
Bruce has left the room.
emeyerth: see you, bruce
MikeG: Ok, I've got to run. Thanks for all the good info Ed! Until next time everyone - stay vertical and don't forget to lock the knees!!!
MikeG has left the room.
Sammy: Gotta dash here also. The pooch is looking for a walk. Keep well!
Sammy has left the room.
johnweeb: I have to go too. I got to Starbucks and hang out while Susan rides her horse at the equestrian center. Great chat. Look forward to the next one.
emeyerth: I also must go - remember that the next chat is in two weeks! See you then
emeyerth has left the room.
Gopher: Bye...thanks for the great chat
Murf: I was looking for an old presentation of hers but we can't publisize
Gopher has left the room.
johnweeb has left the room.
DarwynP: ALS society gave me a kit that is a mask with a bladder and a oneway valve that you force extra air into your lungs with to expand them fully.
Murf: was it something i said?
DarwynP: Sorry but it is time for me to go also.
Murf: DarwynP: great that they can help. anything you need from us?
norminstormin: is there some good leg muscle exercises i could try
Dart!1857: A good chat, friends, and look forward to hearing from y'all in two.
Murf: norminstormin: Bruce has put that on our website
norminstormin: oh ok
Murf: Great chat!!
DarwynP: Not right now, thanks murf. Talk later.
Dart!1857 has left the room.
DarwynP has left the room.
Gary_KS: Bye, talk to all next time.
Gary_KS has left the room.
Murf: I better save the chat