Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
Host: Ron Moffett  
     
Jim Jelbert   Hi is there anyone out there today, I'm flying in from the UK England for the conference on the 11th on my own I hope to be there in time for the evening meal together but my flight doesn't get in until 1715 so i'll be pushed for time.
GregF   Good morning
Ron M   Good morning Greg. How are you feeling today
GregF   real good today how about you?
Ron M   Going along. It has gotten cold in Chicago so that affects me alittle bit. Where are you from
GregF   I am in Colorado, it is cold here too
GregF   mornin Jerry
Ron M   Beautiful state though. Born and raised therre?
sfurman   good morning
Ron M   Goodmorning sfurman
GregF   no im from eastern Kansas been here 17 years
Ron M   Very nice. I have been born and raised in Illinois. Hoping to get to a warmer climate at some point. 
sfurman   i'm in eastern Kansas and it is up to 36 allready with south wend.
Ron M   How are you feeling today sfurman?
sfurman   feeling good today
Ron M   Thats good.
GregF   Ron, sfurman is my brother both of us and our sister have this disease
sfurman   Have either of you heard any updates on the Navartis trial 
Ron M   Thanks for saying something. I would never have figured that out.
GregF   not me
Ron M   Not since March. Have you read the March transcripts from the KD site. I believe it was on Navatis
sfurman   I wonder where everyone is at this norningm
GregF   I was suprised that the three of us are the only ones here
sfurman   i'm terible typer..morning
Ron M   I was wondering the same. I have been on a fair amount of Chats and I am not sure.
Ron M   I know that we have moved some chats to anymeeting but I didn't see any conference when I went over there.
Ron M   Are you guys still able to work or have you retired.
sfurman   Im retired. 
GregF   My Dr. kind of retired me but i still work all that I can
sfurman   I can still walk normaly but can't lift.
GregF   I went from physical labor to a desk though
Ron M   I am getting to that point myself. Still working. It is a desk job. But that appears to be getting harder.
GregF   How about you Ron, how are you dealing with this stuff
GregF   Jerry I got an ergonomic keyboard and it helps with typing, my hands still shake when i type but this is better
GregF   mornin David
david   Good Morning all
Ron M   I take it day by day. I don't let anyone know at work. Fortunately, I work at home so I don't have to commute, Not sure how long I can keep going. But I do the best I can. I don't look far into the future.
Ron M   Good morning David.
david   Sorry I am late just forgetful
sfurman   Im on a lap top can you get a better key board for it?
Ron M   Not a problem. How cold is Ohio?
GregF   yes you can get a keyboard and plug it into a usb port
david   Coldest day yet this year add in rain and few snow flakes and you'll know why I am planning to stay indoors today
Ron M   David, smart move. Sounds like you have our Chicago weather.
david   I am using a wireless mouse and keyboard with my laptop computer with using one of the laptop's usb ports
GregF   I was suprised how much this keyboard helps
Ron M   sfurman, when u say u cant lift. How heavy of items r u talking about? 
sfurman   no more than 30 lbs below the waste and no more than 10 lbs above my head
david   I noticed your comment about looking forward Ron and I am taking a little different view.  We have recently complete detailed plans with the help of an architect to renovate our home to make it fully accessible even thought for now I do not need it.  This way we are not forced to accept a quick fix.
GregF   Good morning Dean
dean   good morning where is eveyone?
david   I am in southwestern Ohio
GregF   we were trying to figure that our ourselves
dean   has anyone heard about the trial study?
GregF   I am in eastern Colorado
Ron M   David, that is smart to do. That is good advice for all. I would do the same but I plan on moving in the next few years. What I mean is that I do not spend a lot of time thinking about the future and what I won't be able to do. I get too depressed. Planning for it though like you have is smart.
Ron M   Good morning Dean. 
Ron M   Dean, we were talking about that earlier. Not sure. Appears to be a small crowd today.
david   Dean, we visited southwestern Colorado this past summer and enjoyed exploring that area, we have previously spent time in Rocky Mtn National Park and this way a completely different experience
Ron M   Dean, where is Folsom PA?
sfurman   is the conference ever in the midwest
dean   I am in a town called Folcroft, Pa. 20 mintues south of Phila. 
GregF   R,M,N,P is awesome to see, we used to hike around bear lake when we went up there but cant do that anymore
Ron M   sfurman, it has been. I believe it was in chicago years past. KDA doesn't choose the location. It is the Doctors conferance that does and KDA follows them. 
david   sfurman; I think it was held in Chicago once several years ago, but it is scheduled to run just before or after an international neurological research conference and this year that will be in the DC area as it was three years ago.
Ron M   Dean, u are probably not far from York than. I have a friend in York that I visit now and then.  
david   As it was explained to me, a number of the KD researchers attend that large annual confernce and we are able to get them to participate with us by just offering to cover their hotel costs. 
GregF   Ive been told that we can watch parts of the conference online is there a schedule we can find for that?
dean   York, Pa is in the northwest part of Pa. I an in the southeast part of Pa.
Ron M   David, that sounds right
Ron M   Is anyone going to the conference? 
sfurman   would like to go, but can't this year.
dean   no i can't make it 
GregF   I cant this year 
Ron M   I am not going either. I am hoping it gets to the midwest at some point.
david   GregF; yes we are planning to use the anymeeting webinar feature again this year for a number of the conference programs but am not sure if the exact schedule.  However all of the webinars will be Wed the 12th, Thurs the 13th and Fri the 14th between 8:00am and 5:00pm eastern standard time.
GregF   Thank you
david   I will be at the conference and monitoring the anymeeting webinars again this year to pass on questions that remote attendees type in using the chat feature.
Ron M   Greg, that is correct. It was done last year. I am not sure which parts will be shown. I haven't scene a schedule. They sent an e mail last year. I assume they would do the same 
dean   if someone miss the anymeeting chat is there a way to view the transcipts?
Ron M   Dean, there is no transcript like the ones that are posted from this environment. They are starting to record them though. So hopefully that will work and be posted so people can listen.
david   We have the ability to record the webinars, but I know from past experience that KDA will need to get permission from the researchers to make any recording of their presentations.  
dean   thanks
Ron M   Dean, fyi, If u go to the KDA site under Octobers chat transcript. It has a recording of the October Chat to listen to. I assume there will be more of these.
dean   thank you Ron for the info. 
Ron M   welcome Dean
david   I just confirmed that there is a tentative agenda available for this year's confernece on the KDA website so you can get some idea of what will be available.  Please let me which one's you like to have available at this email This email address is being protected from spambots. You need JavaScript enabled to view it. 
Ron M   Thanks David
dean   Ron i just went to the oct. chat and it said due to the chjat held @ anytime.com there is no transcrpts related to the web meeting
dean   chat
Ron M   There is a link to go to anymeeting. Do u see it.? U need to click on that. Give your name and e mail address to listen
dean   I was looking for the one skeltal muscle as possible therapeutic target for KD
GregF   Guys I have to go but hope to visit with you again in the future
sfurman   good bye Greg
david   Dean, I recall that a few months ago they had completed the initial two-person process to determine acceptable dosage range for that treatment and that they expected to start the actual trail later this year
dean   that's what i heard. but can't be soon enough. 
Ron M   Dean, it says KDA Webiner October 4th. You would click on that,
sfurman   I am leaving now, hope to chat next month.
Ron M   I know what u mean Dean. Appears these studies move slower than slow.
Ron M   Take care sfurman.
dean   ok Ron I will give that a go. Thank you and have a great day guys. 
david   Hope to see you at the conference or on one of the webinar for the conference and again the first satruday in December for another chat
Ron M   I need to transition myself. Nice chatting with u all. Happy Thanksgiving to u. Hope to talk to u next month
david   I need to drop off now Ron adn Dean until next time stay vertical
Ron M   Will do. Be well