Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
     
david   Good Morning Tom K 
TomK   David easy login this morning thanks for the Java advise.
david   Well it is good to have guessed right for a change.  How are you andf yours this morning?  We are both battling colds, Margys about 2 days ahead of me and I am hoping not to folllowi her lead completely
david   hey Ron M how are things in Chicagoland?
Ron M   Good Morning David. Tom
Ron M   David, things are going. Cubs in the playoffs and the temperature is dropping
david   Good for the Cubs and it is very fall like here in Ohio also.
Ron M   David, sorry to read that ur not feeling well.
TomK   The Cubs can always throw Snow Balls.
Ron M   Yes, just came back from Ohio for work. Was at Mohican State Park. Are u familiar with it?
david   Ron M any additional word on the conference, did you get a site picked out for the Tuesday night meal
Ron M   Tom, if they go deep in the playoffs. It might come to that>
david   I have heard of it Ron but never been to that state park, but the ones I have been to have been very nice.
TomK   Ron when was the last time the Cubs made it into the Playoffs?
david   Margy just confirmed my thought we were just in near Mohican a couple of weeks ago.  We like to visit Holmes County an Amish area east of the park
Ron M   David, I made some suggestions. One was the Pizza place down the road that you e mailed me about. There is also a micro brewery place down the road. I am not sure where they are going to have it. There is a bar/restaurant next door. I think that they are going to have it there. Andrew is deciding. I won't be able to make the Tuesday night's dinner.
Ron M   Tom, I wathced the game but can't remember. Has to be around 10 years. Where are you from Tom?
david   Ron M I cannot recall your line of work, was it a conference that had you at the park?
TomK   Life Long Cincinnati Reds Fan
david   Ron M the Dwertman clan has you outnumber this morning, Tom and I are 2nd cousins
Ron M   I work 4 State farm insurance. They were looking 4 a cheap isolated meeting place near our Ohio team,. I guess if fitted the bill. I liked it a lot. I like that kind of living. A lot of good scenery and woods. 
Ron M   Wow, didn't know that. U guys live close to each other ?
TomK   Ron my brother just Retired from Seneca Insurance after 35 years in the Insurance bussiness
Ron M   Tom, then u had some years with the big Red machine. I am still waiting for my years with the Cubs
Ron M   Tom, what did he do 4 them ?
TomK   The Sparky Anderson / Pet Rose era was the Good times for Us West Siders of Cincinnati.
david   Yes Tom and I are both life long Cincinnati area folks and yes the Big Red Machine days were awesome but now a farily distance memory.  
Ron M   Yes it was. It was an exciting team to watch. Pete Rose was a great player
TomK   He did Commercial Insurance for Small & mid size Companies
Ron M   Tom, he was in sales then
TomK   My brother would usually put over 60,000 miles on his car just traveling the Midwest
david   Ron M any idea how many people have signed up for the conference?
TomK   Ron he mainly was the Company rep for the Local Insurance Companies
Ron M   No, We were on pace 4 the same amount as last year. That was a few weeks back . Not sure where we are at now.
Ron M   David, did u see that u r on the agenda. I believe Wednesday. ?
david   TomK sounds like your brother supported people like my Dad would have an independent insurance agency for years in Cinci handling commercial and individual customers.
Ron M   Tom, r u still working /
TomK   Ron I retired offically back in 2013
david   Yes I saw I made the agenda and now I just need to complete the presentation and be ready to share what we have learned over the last couple of years.
Ron M   Tom, nice. What did u do?.
TomK   David are your related to the Jewelry Store?
david   Ron M cousin Tom was a firefighter so you can imagine what that type of work did to his muscles when KD caught up to him
Ron M   David, let me know if u need any help. I am inteested to hear about it 
TomK   Ron Firefighter for 30 years and then retired and started working for the IRS in the Small Bussiness section of the IRS
david   TomK if we are related to the jeweler it would have to be back started with my great-grandfather.  
Ron M   Ok, I remeber u now Tom. Its been awhile.
TomK   David for the Last two weeks we have watch numerous Tv ads for the Yelton Jewelry Store in West Chester !
Ron M   Tom, ru coming to the confeence ?
david   Ron M Tom told me earlier this week that he could not get into the chats due to Java issues.  TomK Ron helps out with some of the website and other tech issues, he is also a KD board member.
TomK   Ron I would like to come BUT the wife has a few at Home Obligations to deal with.
david   I suggested that 
david   Tom ignore the message from Java that the most current version was not installed and just keep trying to login and that seemed to have worked this time
TomK   Ron & David it appears that Java will only run on my Desktop and not my Icon page
Ron M   Tom, understandable.
david   TomK what's an Icon page?
TomK   David with my windows 8 version I have set-up Icons of my daily Use Software... such as Excel, PowerPoint, Word etc
Ron M   David, glad u were able to help Tom log on. Not clear on why he is getting that message. Java does seam to send out alot of frequesnt updates. 
david   I do not know about you but it seems to me the more changes they make to the Windows operating system the less I like dealing with it.  I guess their idea of what's intuitive and mine are far apart
Ron M   Tom, how do u like Windows 8? I just recieved it for my work tablet. Its not as bad as I thought.
Ron M   David, I know how u feel. I think they r trying to generate revenue sometimes. Sometimes less can be more.
TomK   Ron I found that Java just wants to be the Sole program running during these CHats. I like Windows 8 but Microsoft is now Bugging to Upgrade to Windows 10
david   I have been getting update request for Windows but I thought that was for Windows 10?  This laptop is not that old and it is Windows 7
Ron M   I am running window 7 on my computer and its perfect for it. But I am getting bugged to install windows 10 also. I am holding off. Haven't heard much information or feed back on windows 10
david   I had experience with Java when after an update it kept asking me to install the latest version, but when I ignored it and went on to login to the chat it worked so I guess that is the take away if others report problems with Java Ron M.
TomK   My neighbor across the street and it took him 2 days to get his printer to accept windows 10
Ron M   David, thats good to know. I had that also where Java kept alerting me to update and I ignored it. I never had that around a chat though. Good to know.
TomK   OK David I am now in and hope you Put on a Good Presentation Wednesday are the Meeting going to be SKYped or Viewed on Line?
Ron M   Thats the problem being an early adopter to windows some times.  
Ron M   Tom, we are going to try and have some of the meeting presented on line. People ask for this. Hopefully we will be successful
david   Well we are begnning to see some more finishing work on our home.  the bathroom tile is almost finished and the painters have started to apply the color coats in a couple of the rooms.  I hope to have some pictures of completed work but we do not move back home until October 29th so I will not report on a completed project.
Ron M   Goood morning oneredite
TomK   I hope to watch some of the Conference On-Line?
oneredlite   Good morning everyone
Ron M   Tom, I hope u can. We will certainly try to make that possible.
david   Ron M I was beginning to wonder if any of the sessions would be broadcast on the web since I had not been contacted to help with that process.  Is Mike G going to handle it again?
Ron M   David, what ever you can share will be great. Sounds like its close to being done. I am sure a long process
david   Good morning oneredite?
Ron M   David, yes. Mike G is going to try and get this going. If ur still willing to help. I will let Mike G know this.
Ron M   Oneredite. Where is Malvern PA ?
david   Okay I will send Mike G a message later today
Ron M   David, that will b great. We would appreciate ur help greatly.
oneredlite   Malvern Pa 30 mins away from Philadelphia 
oneredlite    I will not be attending the conference this year..Last conference was at San Diego 3 years ago?
Ron M   oneredite. Ok, been up around there. Had a close friend near York. I don't think that s terrible far.
TomK   David is my cousin Paul Nolan on the Agenda?
david   oneredlite you had some excitement in your area last week with the World Family conference and a visit from Pope Francis
oneredlite   Yes, The Pope week.. I did not get a chance to see the pope , just watch on TV.. my friend took some great pics where the Pope stay 
oneredlite   Helicopter Ofsprey landed back and forth at lawn of St Charles Seminar
david   TomK the last agenda I saw did not include cousin Paul, but then again it's a much longer drive this year.  Did he indicate that he would be making another presentation this year?
Ron M   Tom. Not sure if ur aware but the agenda is posted on the KD website home page under the Conference banner. 
TomK   OK guys the Wife has informed me that its time to Go Krogering?
Ron M   Hey Tom. take care of your self.
david   Take care TomK I'll let you know what I find out about webcasts
TomK   Hope to watch the conference from Cincinnati!
Ron M   Oneredlite, have u lived in PA all ur life ? 
david   oneredlite what an exciting time we watch it from here in Ohio too and the thought of being in those crowds made me glad to be able to watch from afar
oneredlite   Yes..
oneredlite   I met someone who lived in Pittsburg during san Diego conference
Ron M   Those crowds would of been challenging. I never liked crowds when I was healthy. Now, I just avoid them.
Ron M   Oneredlite. Nice, ru still in touch at all /
oneredlite   The traffic is slow during Pope weekend visit
oneredlite   Not really, we were both young in 40s, he is a software developer I think
Ron M   I can imagine there would b a lot of traffic
david   oneredlite, since I was in San Deigo last time we likely met also sorry you will not make it to this conference.  as Tomk had noted it looks like we are going to webcast some sessions again this year hope you can tune in for one of them check the KDA home page for updates on that
Ron M   Oneredlite. ru still able to work ?
oneredlite   I will probably tune in for webcast... I know the trials looks successful
oneredlite   I am working, still able to walk and ride a little bicycle.. just twitching
david   oneredlite are you participating in the clinical drug treatment trial?  I have expressed an interest for the Ohio State University test site but have not had a follow-up contact yet 
Ron M   Thats good. I am still working also. Its getting harder though.
oneredlite   My younger brother has this KD, I wanted him to go with me on next conference.. as long you can keep moving.. just move it helps 
Ron M   Yes, I agree
Ron M   Gentlemen. Its been great chatting with u. David. I will cu in a couple of weeks. oneredlite - I hope to catch up with u on another chat. I need to get my son and start the day. Be well.
david   I agree with you on the keep moving.  I have been working with the same physical therapist for over 5 years and following the "never more effort than 75%" I have experience some improvement in stability and strength.  I can still take a walk with my wife so thankful for that.
oneredlite   Ok Bye Ron, i am not qualify for thr 2nd phase of trail, but phase 3 yes
david   Take care Ron M see you 
oneredlite   David where do you lived?
david   I live in Lebanon Ohio between Cincinnati and Dayton.  I grew up in Cincinnati
oneredlite   I see. At least there is a clinical trail at Ohio State U...
david   I guess I've lost track of the number of phases.  I know that at last year's conference they had gotten approval to proceed and when I talked with Angela K at the NIH I learned of the OSU site and Angela passed my information on to them.  I hope to learn more during the Chicago conference
oneredlite   Yes, I hope they will talk more about the trails and other new drugs that may be coming soon. Sometimes, they stop webcasting if it is touchy subject to prevent leak info..
oneredlite   Your excercises with PT, how do you strengthen the neck mucles?
oneredlite   muscles
david   Well I hope the webcast allows you to get the information first hand, but if not I will share what I find out during the next chat.  But you are right about the limits placed on clinical trail data.  I just hope to learn that the trail in proceeding, any progress is good news
david   I learned about some neck exercises from Bruce G's "Living with Kennedys Disease" blog (his exercises are also on the KDA website) an then I went over them with my therapist for tweeking to my personal needs.  The main movements are just slow rotation of the next side to side moving ear toward shoulders another moving head side to side and one more to move chin to chest and then lift up to look at the wall behind me
david   All of the movements are slow and to be without pain.  I started with just a few repetitions and worked up to doing ten sets for each exercise 5 or 6 time a week.  I used to have a lot of neck pain before I started these movements especially early in the morning but now I rarely experience much pain.
oneredlite   Thanks David, My Physical Therapist said the same thing too added holding 1 book on each hand and lift them both up in air several times to stable the neck muscles too. 
david   There are also a number of shoulder movements that can help support the neck
david   Well it is time for me to move on to the next commitment this morning so until next time stay upright.  If you want more exercises check out the KDA site,  I printed those and took them to my therapist when I starting address KD and over the years with her help I have maintained and improved hip and shoulder abilities far beyond my initial hopes