Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript   11-20-2010

Topic:  Post Conference Chat

Host: Terry Waite


BEGIN CHAT

Stan: Hi Ute
UTE: HI Stan...how's the snow in Michigan
Stan: Got a couple inches the other day, but most of it has melted. Now it's just cold. I'm in semi-hibernation mode now.
Stan: Hi Luis.
loshimo11: Hello everyone. This is Luis Shimomura joining in from San Francisco. How's everyone doing today?
Stan: How are things where you are UTE?
loshimo11: Where's everyone else?
UTE: Not bad, how about you Luis,,,here we have a foot or more of snow...but feels great now that were above freezing
Stan: Not doing too bad Luis. Just cold. Olny supposed to get to about 30 degrees for a high all week. Don't know where everyone else is. We neglected to synchronize our clocks again.
loshimo11: We've had a bit of rain in the last few days... maybe half an inch. It's been in the high 50's during the day and mid 40's at night.
Ed M: good morning everyone
loshimo11: Hey Ed!!!
Stan: Ah, the man of the Hour. Welcome Ed.
UTE: How Ed thismorning and hows the weather
Ed M: If I am the man of the hour, it will be a long hour!!
Gary_KC: Good morning! This is Gary Uchiyama joining in from Kansas City. It is 33 degrees and cold.
loshimo11: Hope there aren't any pop quizzes at the end of the hour.
Stan: Hi Gary
UTE: Is everything up to date in KC
loshimo11: Good morning Gary.
Ed M: Austin is a bit warm today - going to make it to close to 76 today
Gary_KC: Hi Stan and UTE
Ed M: Hi, Gary
Gary_KC: Hi loshimo11!
Stan: You got that right Luis. I never took Biology.
Ed M: lwith no snow!
Stan: Sure, rub it in Ed.
Ed M: To be honest, I miss snow. There are only two seasons in Texas, hot and not as hot
UTE: I wasnt to great at biology...but this week in the news they said the number of cells in the body is equal to the dwarf planets or stars in the universe???
UTE: Morning Bill
Ed M: Well, there are a lot of cells, not sure about how many stars there are.
Stan: I visited Texas once. That was enough. So, what is on the agenda for today?
Ed M: IT is open, whatever one wishes to talk about.
billeric: Good morning from warm and toasty Phoenix
loshimo11: Good monring Bill.
Stan: Morning Bill, Fl-don
billeric: Are you still running Ed?
Ed M: morning, Bill
fl-don: morning all from sunny fl
fl-don: where in mi stan?
Stan: Albion
UTE: Bill, I heard from my daughter, that Phoenix had a cold wave last week, she was freezing 60 degrees
Ed M: billeric - I am but I cannot run as fast or far as in the past. I try to run 4-5 times a week to keep the weight down and hope it helps my muscles.
fl-don: old sterling heights here be4 fl
loshimo11: Just to get something starting... I'm finally getting over my cold. Seem like I caught it down in San Diego during the conference. Has anyone here had their flu shot? Do they work? Any side effects?
billeric: It was Ute but now it's going to be in the 70's for awhile
Stan: I have a cousin in Sterling Heights, Don.
fl-don: was nice there be4 recession
Ed M: loshimo11 - I did not get one this year yet, but I have in the past. I never had any problems.
billeric: I have a flu shot every year. No side effects that I can remember
UTE: I swear by flu shots...too easy for us to get pnemonia
Ed M: My doctor thought that they were a good idea as we are susceptable to pneumonia.
Stan: I got my flu, pneumonia and distemper : ) shots back in October. No side effects other than a sore arm for a day. No flu or cold. Of course, I can't saty it is from the shots since I never hav had a problem with getting sick.
Stan: I need bigger keys on this keyboard I see.
Stan: Welcome, Bruce
loshimo11: I hadn't had a cold of this magnitude since 1998. So when it hit me several weeks ago, it felt like I had been run over by a truck.
Ed M: Hello Bruce
loshimo11: Good morning Bruce!!!
billeric: I am still wearing a flexible knee brace after a couple falls. I feel my knee gives out then I fall. Have any of you tried one?
Stan: Hi Jeff.
Bruce: Good Morning, Everyone
Stan: My right knee likes to give out, Bill. I don't use a brace. I just keep my cane handy.
billeric: Morning Bruce
UTE: Bill, no knee brace, but I still have a brace on my broken arm
poohsdaddy: Good Morning All..... took me a bit to read what I missed by beibg late.:?
billeric: I guess I am past a cane. My four wheel walker gives me a little more security
UTE: walkers are great
Stan: Doctors all thought I would need a walker or wheelchair after my hospital stay last year. I love proving them all wrong.
poohsdaddy: I had a four-wheeled drive walker with hand brakes 'til I broke my leg..... Then, I was demoted to a two-wheeler to slow down and be more careful.
billeric: Falls are the worst. We need to do whatever to prevent the.
UTE: Morning Stewart, hos the body and weather
loshimo11: I just got a Metro Walker online. It's amazing that it only weighs between 5 and 6 lbs. It folds like an umbrella and hardly takes any room.
Stan: Hi Stewart.
UTE: What is Metro Walkers e-mail??
Stan: Luis, I'll have to keep them in mind when it comes time for me to need a walker.
poohsdaddy: Stan, what were you in the hospital for ?
loshimo11: UTE... Don't know offhand. If you Google it, you can find several people that sell it. Got mine at Walgreen's online. It was the cheapest at $90 and included shipping and no taxes!!! I think it retails for about $150.
Ed M: UTE - I am not sure but you can get them on amazon (and if you buy thru the kda website, the kda gets some of the money!! -
Stan: A number of things. I woke up one morning unable to breathe. It had been very hot here and I did not take the necessary precautions. So, I was also suffering from heat exhaustion.
loshimo11: The only drawback of the metro walker is that it has fixed front wheels. Kinda hard to manuever... I'm trying to put swivel wheels at the moment.
billeric: I have two. Keep one in the van and one at the house. Medicare will buy one.
Stewart: I'm Happy to say I'm doing OK Just popped in to say a quick Hi, I have to go to drop my son at Lego robotics. Catch you all next Chat Thanks
Ed M: Stan - was the breathing problem due to a constriction in the larynx (like asthma)?
Bruce: Sorry, guys, my brother-in-law called to talk about football on TV today.
Stan: No, it turns out I have COPD
poohsdaddy: Oh... Does the heat and humidity bother anyone else like that ? My grandma used to say she liked winter better because you can always put on a sweater, but in the summer -- there's only so much you'll take off. LOL
loshimo11: Ed... I've been doing my Christmas shopping at Amazon and other KD supported stores. It's been great!!!
UTE: Bruce, it should be quite a football day!!!
loshimo11: So Stan... you now work for the police department?
Bruce: Ed, a qyestion. I was just reading the latest Leuprorelin study results and the report said that Leuprorelin ""could"" be beneficial to someone where onset has been less than ten years. ""Could"" or ""might"" ... I found it interesting. Thoughts?
Stan: Retired and on disability from a automotive manufacturer - four-letter F word : )
Ed M: poohsdaddy - I find my enduranace is much lower in the heat. I do much better when it is cold
Bruce: Morning Terry
terryw: [b]Hello
loshimo11: Hey Terry!!!
Stan: Hey Terry.
Ed M: Bruce - One thing one has to remember is that a good scientist ALWAYS uses weasel words in any discussion. That is why the could and might are used.
Ed M: Hey, Terry
Bruce: Poohsdaddy, the cold is tough on me. Hands do not work. Legs are weaker. Cannot get warm when I am outside. I am a Minnesota boy, but do not think I could live there today.
poohsdaddy: Ed, I have the same problem in the heat.... or extremes of cold in WI.
terryw: [b]Just catching up on the previous posts
Bruce: Ed, that is what I thought because of how it was worded. They also talked about a longer study ... more funding needed.
Ed M: With regard to the actual benefits, I would guess that there are two issues with treating KD, preventing the symptoms from occurring and reversing the symptoms once they occur
loshimo11: Bruce... any idea why the study was keyed on swallowing instead of just regular muscle strength?
poohsdaddy: Anyone talk to NIH since the last chat? any news on upcoming clinical study ? or studies ?
Ed M: I could be that the leuprorelin might prevent the onset of symptoms but not a big effect on reversing symtpoms that already occurred (this is just conjecture)
Bruce: Luis, that bother me also. It seemed to be such a narrow focus. The second stage of the trial was strictly on the benefits of swallowing and I can understand that better.
Stan: Lets me out then. I've been working with KD for 30 years. Probably longer, depending on the doctors definiton of ""onset"" and mine.
billeric: Me too Stan.
Bruce: Poohsdaddy, what we can say is that NIH is conducting further studies on the potential benefits and dosage for a couple of potential trials. It could be one-three years before the next one however.
Ed M: loshimo11 - I do not think that they keyed on swallowing, I believe that they measured other indicators of muscle activity (I have to look this up to be sure) - it is just that the only statistical effect was on swallowing
loshimo11: OIC
Stan: Get a peg tube and don't worry about swallowing.
Bruce: Ed, it appears that swallowing is all they reported on. The two recent articles strictly talked about the swallowing testing. Maybe I missed something.
terryw: [b]They did a throat dialation on me this week during my upper GI scope inspection
loshimo11: I think I may have been reading the same article Bruce.
Bruce: How did that go Terry?
loshimo11: Terry... sounds painful.
terryw: [b]It seems to have helped a little with swallowing food
poohsdaddy: Do we have any Guest Speakers scheduled yet for upcoming chats ?
Ed M: Stan - there also could be effects to prevent the further progress of the disease. This is harder to ascertain as the progression is very slow and the studies have only been over a couple years. It could be that a longer duration of the study might show beneficial effects for those with symptoms.
terryw: [b]not painful really at all, just uncomfortable for about a minute
Bruce: How long is the procedure supposed to help for. My father-in-law had it done and it seemed that a year later it had to be done again.
terryw: [b]They ran the scope all the way down to the bottom of my stomach and found no obstructions
Bruce: Poohsdaddy, we have sent out an email to the researchers asking them to pencil in dates. I have not heard back from any of them yet.
loshimo11: Terry... are you sure it wasn't painful? Sounds like a reverse colonoscopy...
Bruce: Once we hear back from the SRB, we will expand the list of potential guests and try again.
Stan: I've had two endoscopys and I had no problems, Luis.
terryw: [b]They are thinking silent acid reflux is causing the airway closures, I don't have heartburn that I know of but when I bend over toget something I feel fluid come up into myy throat
poohsdaddy: My throat hurts just thinking about it.... I gag easily lately.
Bruce: Terry, I like the word ""silent."" If it is not ""silent"", what does it sound like. 8)
terryw: [b]Luis, They were going to sedate me heavily but I expressed concerns so they barely gave me any sedation, I was fully aware thru the whole thing
terryw: [b]Bruce the whole procedure took only 5 min
Bruce: Ute, if I were a betting man, I would go with Oregon, Oklahoma, Va. Tech, and Auburn. If I go with my heart, there are a few changes to that list. But, yet, a great day for games.
Ed M: Bruce - I just checked the original study by Soboe, and they did use several other measures such as Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (whatever that is!), lung capacity tests and others.
terryw: [b]They told me that I handled it betterthan 90% of the patients that they sedate
Bruce: Thanks, Ed. I cannot figure out why the two recent articles focused on swallowing as the measure. Could be the reporter, I guess.
loshimo11: Terry... UDAMAN!!! The last time I had a colonoscopy, the neurologist made sure I was completely out.
terryw: [b]I told them that I was used to the choking and I tried to meditate and stay calm while the scope went down.
Ed M: Bruce - Bruce which artilcles are you referring to?
poohsdaddy: I agree with loshimo11 on that.... I'd have to have something to help me relax, or not realize the procedure.
Bruce: BTW, the new KDA website is coming along nicely. We hope to launch in 2011.1. There will be a lot of the same information, but also some new stuff. There will be more images and slide shows.
Bruce: Ed, I will find them again and send you the links.
Stan: Cartoons?
Ed M: IF the articles were from sources like newspapers (and not scientific articles), I would guess that they re reporting on what symptoms the drug was effective.
Bruce: Yes, Stan, we have pictures of me and Terry on it.
Ed M: at releiving.
Stan: Put mine on there and you have a horror movie.
Ed M: at relieving!!
poohsdaddy: :}
Bruce: Susanne Waite just published a bunch of pictures of KDA conferences on Facebook. Terry, do you have that link available?
Bruce: Ed, are you still running? I do not mean marathons, but as part of your exercise program?
poohsdaddy: A friend on Facebook sent a note that we should change our profile pictures to our favorite cartoon characters this week to show our support ""Against Child Abuse"".
Ed M: Bruce - was this one of the articles? http://www.nu-research.com/research/6170
terryw: [b]Sorry I do not, If you have a facebook account look up the Kennedy's disease assocation and it is under PHOTOS
Stan: I saw some of the pictures from the conference. I saw my brother and his wife in a couple.
Ed M: Bruce - yes, but not as far or fast,
Bruce: Yes, that was one of the two.
terryw: [b]If anyone else has the direct link please post it
terryw: [b]wait I found the link, I hope it works http://www.facebook.com/#!/album.php?aid=244497&id=325990476576
Ed M: That one just reported what worked (IMO) as the article tried to only report postive results. The reported would have a tough time being upbeat if he reported that other measurements were not improved (statistically)
loshimo11: poohsdaddy.... I am now ""Grandizer"" in facebook. It's the japanese version of Iron Man.
terryw: [b]The new website design looks very nice & clean. It should be a great leap forward for the KDA.
Bruce: I know I should not be complaining, but the next seven days our lows in Georgia will be in the teens and twenties and the highs in the thirties. I moved SOUTH for a reason. I guess I did not move far enough south. Sorry, I have to get in my winter complaints.
Bruce: Thanks, Terry. Linda has been working hard to put things together for a demanding audience.
Bruce: I really like the slide show. It will be a great venue for updating information of interest.
terryw: [b]There is so much info on the KDA site that it is a HUGE undertaking to convert it. Kudos
Bruce: Terry, you have done a great job of keeping the site updated and current. We still have pages and pages to go, but we are getting there.
loshimo11: Sorry... got kicked out of the chat. Was it something I said?
poohsdaddy: loshimo11, I'll try looking you up there. I'mm always surprised by the people I find; and even more by the ones who find me too.
terryw: [b]Thanks Bruce, Hopefully the new design willmake updates easier
Bruce: Yes, Luis, you have the way about you.:p
terryw: [b]Luis it was big brother
terryw: [b]I need to go everyone, see you next chat
loshimo11: I guess I better be careful then.
Bruce: Well, guys. I need to run. I always enjoy our chats. Take care, stay upright, and smile.
Ed M: So long, Terry
Stan: Bye Terry
Ed M: So long, Bruce
loshimo11: Take care Bruce and Terry. Stay out of trouble...
billeric: Me too. See you guys later.
Stan: Bye Bruce.
UTE: Happy Trails to all
Stan: It's starting. Everyone abandon ship!
poohsdaddy: Speaking of Big Brother -- our utility company installed a new programmable thermostat for us this week. In exchange for $$ credits; they can limit usage of your air conditioning during ""peak times"".
UTE: pooh...its the rage thats hitting the country
poohsdaddy: I've found people from over 40 years ago (friends from school days).
Stan: I've had that for quite a while here Jeff. Make sure they know about your medical condition. They change how long it is off during peak times for those with medical needs
loshimo11: Gotta go. Please stay safe, healthy and upright till next chat. Finish Christmas shopping early this year.
Stan: Take care Luis
Ed M: I also must go, see y'alll next time
Stan: Bye Ed
poohsdaddy: Time for me to go too.... Have a good one guys !!
Gary_KC: Bye all.
Stan: Take care Jeff. Looks like I'm out of here too. Bye Gary. I'll turn the lights out.

END CHAT