Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I attended a KDA Conference. Personally meeting several the doctors and researchers actively trying to find a cure has changed my life. I now have hope!

Archives - 2015 and Older Transcripts

Topic: Open Forum  
Host: Ron Moffett  
     
Ron M   Hey Ted. How r u?
TedA   Hi Ron
david   Good Morning Ron and Ted
TedA   Doing great,  howabout u?
Ron M   Good morning David. How is Ohio?
david   Ron how you do with all that snow and cold.  Our Chicago Kids of course being young had fun playing in it; I was just glad not to be there for it
Ron M   I am doing ok. The weather is better here in Illinois. Had about 2 feet of snow earlier in the week
david   Bright sunshine this morning and the high is supposed to hit 50 today !!!!
TedA   Richmond VA we has 1 1/2 inches
Ron M   David, its hard and thats why I spend so much time trying to figure out where to move to taht is warm. The snow just makes it hard to get around and unsafe.
TedA   and it was gone by Noon 
david   In southwest Ohio we missed almost all the fun, about an inch but mainly rainy weather and then cold for a couple of days and now a little bit like spring,
Ron M   I think Virginia would be a better place for me to live. Do u guys get much snow at all in Virginia? Or real cold weather/
Ron M   Good morning Gary. Welcome
Gary_KC   Good morning. This is Gary joinining in from Kansas City.
Gary_KC   Hi Ron
TedA   Not much and when we do it warms up in gone in a day or 2
TedA   Hi Gary
Ron M   Thats nice Ted.  I wish I could say thtat held true here. We can get snow in December and it won't be gone until March. just tough getting around
Gary_KC   Hi TedA
Ron M   So, how is everyone feeling health wise?
TedA   NO falls !!
Gary_KC   Ron, I feel weak in winter because it is cold.
Ron M   No falls is good
david   Ron just about anywhere south of the Ohio River is going to be better than Chicago.  We all have bad weather occassionally but never as cold or windy as you have it up north there.
TedA   Nio falls is Wonderful
Ron M   Gary, i feel the same way. I am hoping that the summer will help me feel better
david   As you know our "little girl" lives in Chicago with her hubby and while we'd like to live closer to them, we will never move up there and she knows it.
TedA   Warm weather is much better then cold.    A challenge to get all the layers of clothes on and off.  ;-)
TedA   Hi Mike
MikeG   Hi Ted
Ron M   David, thats what I hear. I am just trying to hang on here in Chicago for another 3 years until my son is out of Highschool 
Ron M   Good Morning Mike G.
david   Hey MikeG one of the topics is warmer pleaces to live, share about your home area
MikeG   Hi Ron
MikeG   2 feet of snow?!!!
Gary_KC   TedA, I have the same problem to change the clothes. :-(
MikeG   it's going to be in the mid 70s down here... come on down!
Ron M   You know if Mike. Just paradise here in the big city
Ron M   I spend a lot of time looking at Florida cities. Why did you choose the Tampa bay area Mike? 
david   Ron - Andrew showed me some heated gloves at the conference this year and I bought a pair for about $150 and when it is really cold they help alot.  www.ventureheat.com 
MikeG   Don Schings invited us down after the 2001 conference in Chicago.  John Mengel was here too.  We liked what we saw and moved after renting for 8 months.
TedA   Got a light weight bubble / down filled coat this year and it is great.  1 layer under it abd my core body is warm for short time exposure  to the cold.   Also eazy to get on and doo
MikeG   it's a great communiity of about 10,000 - depending on the season...  :-)
david   When I purchased the gloves they also had other heated clothing, I think geared toward winter sports nuts.
Ron M   Thanks David. I will check it out. It can't hurt.  
TedA   OFF
MikeG   Did anyone else have trouble getting in today?  I had to install a new version of Jave and then uninstall the old one... and then it didn't validate!  I just ignored the message and it let me sign in.
Ron M   I did not.
david   MikeG I just had to run a ChatAddon update
MikeG   me too but I guess my Java was out of date
MikeG   Ron, have you got your Bio and a picture ready?
Ron M   David, besides the gloves. Where there any other big take aways from the conference. To help with the symptoms or general knowlege?
MikeG   Ron is our newest KDA Director1
david   MikeG any additional info on the 2015 KDA conference
david   Ron congrats!
TedA   Congrats Ron
Ron M   Mike, Almost. I just got a picture taken. I will work on the bio this weekend. 
Ron M   Good Morning SFurman
MikeG   with your knowledge of Joomla you can put it all up yourself now...  :)
Ron M   Thanks. David & Ted
MikeG   maybe that can be our next training project
MikeG   need to get Andrew on the next one
Ron M   Ok Mike. Lou mentioned to send it to you. How about I send it to you and then you can let me know what you think and then I will put it up.
MikeG   sure
david   Ron we heard from the Joe S. NIH Physical Therapist about the exercise trial and while they did not get a positive determinination on the benefits of exercise they also did not see any damage from exercise.  Confirms for me at least that following the Smart Exercises form the KD website is a good thing
Ron M   That sounds good Mike.
Gary_KC   david, thanks for the information.
Ron M   David, I agree. I talked to Bruce about the study and he had an interesting view. He didn't think that they might of ran the study long enough to see results. 
Ron M   I exercise everyday with the program and if I don't exercise. I do not do well.
MikeG   No falls here but I've had some close calls.  Just nice to have something conveniently located to grab onto when I start to go down... :)
sfurman   any updates about the navartis drug trial
david   Ron I would agree with Bruce's comment.  I worked with my Therapist in 2014 to improve hip stability and stamina and shoulder strength.  Just had a review last week and small improvement in all areas.
MikeG   we hope that Michael Blanar will have some info next month on our KDA webmeeting/chat
TedA   NIH is starting the 2nd phase is all I have heard
TedA   Second phase is the 2 to 1 part 
Ron M   Anyone else that attended the conference have any take aways they want to share to help the symptoms or general knowlege.
MikeG   I almost went... :(
Ron M   Mike, I did not know that. I thought you were there.
Ron M   I was not able to to make it either.
MikeG   no - Paula's mom passed on Nov 8th and we had to cancel.
david   We meet with our architect one more time on Monday and will then have final plans for making our home fully accessible.  We've decided to "Age in Place" and now the real "fun" begins . . . 
Ron M   Ok, thats right. My memory  has let me down. You mentioned that to me.
MikeG   We thought she was going to be ok but she fell and broke 5 out of 6 ribs and wend downhill pretty fast after that.
MikeG   David, are you a VET?
Ron M   Thats great David. Do you mind sharing what changes ur going to make. I would be very interested in knowing this
david   I do know how anyone builds a home from the ground up, we are finding it hard enough with just the decision process for a major renovation.  
MikeG   The VA will pay for some of the cost if you are a VET.
david   Ron M we needed to work out a way to have a level access into our ranch home and then inside widen doorways, hallway to accomodate a wheelchair should that be needed and finally a complete gut and redo of the master bath to have a roll in shower and accessible fixtures
MikeG   that's pretty major!
frabayrui   good mornind from SPAIN
frabayrui   MORNING
MikeG   Hi frabayrui 
Ron M   Thanks David. I think u hit the 3 keys that I look at when I am on line looking at properties. The doorways, acceess to the house and a roll in bath. 
david   MikeG, no I am not a Vet, someone mentioned that in a prior conference and it is good to continue to ask the question since someone will need to know.
Ron M   Good Morning frabayru
MikeG   I just wish I had signed up earlier... I did the modifications and THEN signed up with the VA.
Ron M   Good Morning Stewart
MikeG   Hi stew
Ron M   Mike, what modifications did you have to do?
stewart   hi sorry I'm late
david   Yes MikeG it is major, in fact we have to move out for at least three months while they do the work since almost every room in the house needs some change.  But I know it will be worth it when it is done.
Ron M   Not a problem Stewart. Glad you r able to join us
MikeG   bathroom doors
frabayrui   Anything new in clinical trials?
Ron M   Mike, u in a over 55 community?
MikeG   we had already done the master bath several years before.
MikeG   yes
MikeG   the very first Del Webb community
MikeG   built in the late 60s
Ron M   Him, I was hoping that in the over 55 community the doorways would b alittle wider.
MikeG   our house was built in 72
MikeG   before there was an ADA
Ron M   Mike, you think the newer homes have more ADA features? 
MikeG   frabayrui, the next month's chat will have Michael Blanar on - he will be talking about Armgo's research with Rycals.
frabayrui   any news about new clinical trials?
frabayrui   ok
frabayrui   thanks
MikeG   hopefully he will have good news to report to us
MikeG   David, was he at the conference this year?
TedA   David, have wheel chair roll in at bathroom and kitchen sinks.     
frabayrui   what drug it is Rycals
MikeG   Ted, how have the cruises been?  Is the James frozen?  :)
david   MikeG I think Blanar was there but I cannot recall specifics about his comments, sorry.
Ron M   David, about how many KD people were at the conference? 
frabayrui   I'm taking for more than two years DUTASTERIDE ago, and I think something works for me
MikeG   Hopefully he will have some good news to report next month.
TedA   Boat out of water until about May1st.   Already have cruises booked.    Check out the new website,    Sailing 4 All
stewart   where is this years conference going to be held?
david   TedA we are making the bath fully accessible, but in part due to structural limitations and mainly the fact that 10 years ago Margy got "her ktichen" we will not make further changes in the kitchen.  I guess that means I be fired from my role as ktichen helper!
Ron M   Frabyrui, thats good news.
MikeG   a lot of folks are taking Avodart and getting good results, frabayrui.  That's great!
frabayrui   yes
Ron M   The conference to my knowlege will be held in Chicago
frabayrui   I'm from Sevilla, Spain, architect, and I had to stop working for the disease
david   I think we have about 40 KD'ers and family members, and over two dozen researchers, I very good crowd
MikeG   yes, Ron you are correct
frabayrui   but I think I can walk now better
Ron M   How old are you frabyrui
frabayrui   53
frabayrui   42 cag 
frabayrui   52
Ron M   tnx Mike 4 confirming
frabayrui   52 cag
stewart   thanks Chicago, i to am taking Avodart have been for several years.
frabayrui   53 years
frabayrui   old
frabayrui   I was in CHICAGO in 2010 on holiday in September and went to see Bruce Springsteen
MikeG   that's a pretty low CAG repeat count.  When did you first notice symptoms, frabayrui?
frabayrui   10 days
Gary_KC   I am taking Avodart too.
frabayrui   52 CAG
Ron M   I am 53 and still barely hanging in working. I got lucky and can work from home for a good portion of my day.
david   MikeG I did not think a 52 CAG was low, mine is 48
stewart   i'm still workig but the way things have been going lately I give it another year or so (56 years old)
MikeG   I thought he said 42...
frabayrui    Traducir del: español52 cag is high I think I
MikeG   52 IS high.
MikeG   I have a 47
MikeG   but I'm 67 and still walking.\
TedA   4
TedA   48 cag for me
MikeG   ... with a walker...
frabayrui   road yet, but I get tired soon
Ron M   Mike, I don't know if the CAG repeat reflects the severity of the symptoms. A full mutation occers I think over 40 CAG. I think the CAG just effects the onstart of symptoms
Ron M   What do you do Stewart?
MikeG   yes, that's the consensus
frabayrui   affects only when first noticed the symptoms, the higher repetition, more rapid is the appearance of symptoms
MikeG   I sometimes wonder if the odd/even has anything to do with anything...
david   I am 61 now, stopped working at age 58 when my job moved to Charlotte NC.  It was time anyway I did not realize then how much of a strain it was to commute to/from the job.  The most challenging aspect of my job physically was travel
stewart   Aircraft techn (united airlines)
frabayrui   I send my email, I'm Spanish and I would like to be closer to you in every way, is as follows: This email address is being protected from spambots. You need JavaScript enabled to view it.
TedA   Stopped working end of 2009 at age 59
MikeG   when are you coming over this way again, stewart?
david   However I am still able to walk with just the aid of a cane and I try avoid all steps over 4 inches in height.  My Physical Therapist helped me to determine that 4 inch steps are still doable for me without undo strain.
stewart   Esater hopefully
Ron M   Stewart, thats a physical job. Its great that you have been able to do it for this long
MikeG   the only way I can do stair is if they have a railing on each side..
frabayrui   the results of exercises Angela Kokkinis known?
Gary_KC   Ron M, my understanding is the same for the CAG.
TedA   Take care all and stay up right.
Ron M   Take care Ted
frabayrui   Mike still running marathons?
MikeG   no, but Bob Tudor is doing handcycle marathons and Ed Meyertholen is still running.
frabayrui   ahhhhh
frabayrui   yess
frabayrui   is very
stewart   well guys got to go see you next time thanks
Ron M   Gents. I need to transition. Great catching up with all of you. I hope you have a wonderful day. Hopefully, we will talk soon. Be well. 
frabayrui   In Spain are going through a wave of major cold, but I live in Sevilla, here in the south the weather is warmer
Gary_KC   Take care all. Bye
MikeG   me too - have a great day... or evening.  :)
david   frabayuri, the trial did not result in the ability to conclude exercise helps, but also did not show that it hurts us, just be smart about it
MikeG   stay safe!
frabayrui   Rycals may be the solution?
david   I need to leave now too have a great rest of your day frabayrui
frabayrui   thank you very much  to all my American friends