Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"... almost all of the nurses and doctors did not know about Kennedy's Disease. I referred them here. I want to thank the creators of this website."

2016 Chat Room Transcripts

Topic: Open Forum    
       
jfurman   Good Morning  
TomK   Good Morning  
ronmoffett   Good Morning all.   
Gary_KC   Good morning. This is Gary joying in from Overland Park near Kansas City.
ronmoffett   Good morning Gary  
DavidOhio   Good morning everyone  
ronmoffett   Was everyone able to get on this new chat easily. Any problems ?  
TomK   Easier than Before !  
jfurman   It was pretty easy  
Gary_KC   So far so good.  
DavidOhio   I tried to use the old chat login and password and then switched to my KDA login that will teach me to have different ones
ronmoffett    Good to know - thanks. I was concerned. Glad u figured it out  
ronmoffett   David, I am assuming the house is done. How did it urn out ?  
TomK   David's House looks Great he Provided me & the Wife a Luncheon tour!
ronmoffett   Tom - u live in Ohio correct ?  
TomK   Correct I live on the West Side of Cincinnati!  
DavidOhio   Hey TomK glad you made it today what's new on your side of town?
GregF   Good morning  
TomK   Same OLD stuff Freeze in the AM Sweatshirt at Noon  
MikeG   sorry, I was in the KDA chat room and not this public one...   
TomK   Not to stir things Up but I get a lot of e-mails from the Local MDA asking for Donations.   Do we get a share of any MDA funds for Research?
MikeG   not the KDA directly, but the MDA is providing funds for SBMA research.  Like it does for all the muscular dystrophies.
DavidOhio   I know that support for KD'ers is available at the MDA clinics and I suspect that some of their research would impact what happens in KD specific research
MikeG   they provide $500/yr for hardware maintenance - like batteries and wheels for powerchairs.
ronmoffett   I beilive they have supported some KD research in the past. I go to the clinic twice a year to meet with a PT therapist and doctor. So, they support in that way.
TomK   I know that they support Research for SBMA, they send me a Monthly  News Letter.
ronmoffett   Tom - have you been to a clinic ?  
Gary_KC   MDA sends us Quest magazine, too.  
TomK   Thanks for the Tip on Hardware Maint; i been to the Clinic once and that was Kids get tips on caring for there incapacities.
DavidOhio   MikeG if there is not a specific topic for this morning I was hoping to start us thinking about webcasting for this year's conference.  I am not going be able to make the long trip to San Diego this year. So I will have an even greater interest in helping to make it work this year.
MikeG   yeah, I don't think I'll make it either so we need to find someone who can run it.
MikeG   maybe Ron...???   D
ronmoffett   Tom - I always get something from going to the clinic. Now I go to Northwestern Hospital in Downtown Chicago. Not sure if u have a good one in Ohio. Doctors do make a difference
ronmoffett   Unfortunately, I can't make it.  
jfurman   I thought last years wed cast was good. who ran it?  
MikeG   I did - with David and Ron's help...  
TomK   The Doc that runs the Local Clinic is also my Neurologist and dose let me Know what is going on.
MikeG   looks like we will need to train someone new...  
DavidOhio   I had suspected you might not make that long trip as well Mike. Well hopefully we can recruit a west coast member to set up the equipment.   
ronmoffett   That helps. What I like about the clinic is its free. I just send in a donation. 
MikeG   what does everyone think of this new chat app?  
TomK   Ron I  agree.  The Doctor I see did  his Fellowship at the Mayo Clinic.
DavidOhio    TomK I have not yet gone to the MDA clinic and Margy is after me to get linked to a more experienced neurologist.  What is the name so I can get a referral to see the same one you see
jfurman   So far I like the new app better.  
MikeG   it's good if you happen to have a good doctor at the MDA clinic... I've had some good ones and bad ones.
Gary_KC   MikeG, so far so good!  
TomK   This has been the easiest Chat app, no frustrating you must load the Latest verision of JAVA!
ronmoffett   Tom - that's a solid background. u have a good doc. I also get a lot of help from the PT and OT therapist. They have helped me a lot with energy conservation because I battle fatigue all the time. 
DavidOhio   MikeG I like this chat it seems more user friendly  
MikeG   During the last chat with Ed, we had way too many people (including myself) who could not get on using Chrome or MS Edge because of NPAPIincompatibility issues.  I had to use Firefoxto get into the chat and decided it was high time to abandon the old AddOnChat that we werecurrently using… I found this app had more features than we would ever use anddecided to present it to the KDA Board. They unanimously approved it and voila – here it is.  Please send your comments to the KDA if youlike it or not.  Thanks!
GregF   I like this one. It is easier to get into  
ronmoffett   Mike - I will certainly share the positive feed back at the next board meeting.
MikeG   thanks  
GregF   Also I thought you guys did a good job with the web cast last year  
MikeG   I still have a problem with accessing the chat with Mobile Devices…the JChatSocial Module shares the same position as the search box and,therefore, can’t be seen on most tablets and mobile devices.  I think the solution is to move the MobileDevice Search Box to the top of the page instead of the bottom where the mobiletemplate now has it.  In the interim, youcan select the link at the bottom left that allows you to ‘switch to the desktopsite’.   It’s just a matter of the twoJoomla extensions conflicting with each other.  -@->
ronmoffett   Mike - is a transcript of this chat sent ? Or, do u have to use the save conversation icon below ?
TomK   David, My Neurologist is Hani Kushlaf, located in UCH Dept of Neurology.
MikeG   I'll show you how to extract it to a spreadsheet - like we did the last one.
ronmoffett   Sounds good  
MikeG   the text will not go away like it did on the AddOnChat.  You have to delete it manually.
ronmoffett   Good to know.  
MikeG   maybe we can test the Skype and other neat features later.  
ronmoffett   jfurman - how r u been doing ?  
ronmoffett   Sounds good. I need to take my dog to the vet. but will be back later in the afternoon. I can reach out to u and see if u have time
jfurman   I'm Doing well. 70 degreese and sunny you have to be good.  
MikeG   good enough - I see the GI doctor on Monday for this hiatal hernia I have.  I think it's responsible for the phlegm and hacking I have.
ronmoffett   Jfurman - u do. Its warming up here in Chicago. was close to 50 yesterday so I am starting to feel better.
TomK   I heard that hiatal hernia are extremely Painful  
DavidOhio   Sorry to hear about that MikeG I think you are right about the symptoms hope the doc can help you find relief.
ronmoffett   Mike - we have something in common. I am going in on Monday to see a surgeon for my groin hernia. Botheres the hell out of me. Good luck with your doc ?
MikeG   it's only painful when I twist a certain way it it pops or catches something near my esophagus.
DavidOhio   Ron, that gives me hope that the forecast is right since we often get your weather patterns a day or so later
ronmoffett   Has anyone else had a problem with hernias ?  
ronmoffett   David. Supposed to be in the 60s next week so things are starting to look up for us.
GregF   I have a hiatal hernia. I think it makes the gerd worse  
MikeG   I've had a groin hernia for years.  The doc said I could have a mesh put in if it got bad but to just push it back in if it bothered me - until I want to have it repaired.
DavidOhio   As I mentioned to Mike earlier, this winter has been very mild and so I really have no complaints
ronmoffett   Greg - what age did that come about  
GregF   They found it when I was in my early 50s  
MikeG   yeah, I'm constantly hacking up phlegm - really disgusting.  
ronmoffett   Mike - I remember u mentioning that to me but mine really bothers me 
MikeG   you should probably get the mesh then.  
ronmoffett   phlegm is a problem. I hope it is tied into the hernia  
DavidOhio   I had pain etc with swallowing after something got stuck in my throat and have been taking a daily acid reducer since it seems to help
ronmoffett   I am going to. As fast as he can get me in. Its a busy time of year for me. I need to get this fixed and move on.
MikeG   there's another procedure that I've heard of that uses non-mesh - it may be better but I don't know enough about it to speak to it.
ronmoffett   Mike - do u know what its called ?   
MikeG   no, just started getting spam from a place in Naples when I did a Google search for hernia repair.
jfurman   I had a swallow study done last week and they told me I have a slight hiatal hernia, but it does not bother me yet.
ronmoffett   I was wondering since hernias have to do with muscle walls. If KD people are more at risk.
MikeG   I had the same thing but the doc had to abort the test because he said I was swallowing wrong and could aspirate the barium into my lungs!
ronmoffett   jfurman - so u didn't know of it ? No symptoms  
MikeG   could be, Ron.  
jfurman   No symptoms, mabey acid reflux.  
DavidOhio   If you guys are not currently doing some of the neck and swallowing exercises that Bruce posted to the KD website then I suggest you check them out and maybe get a referral to a speech therapist.  I have seen one twice and both times what I learned to do has really helped me avoid further problems
ronmoffett    I have acid reflux - had a few procedures to remove polyps from my stomach/throat.
MikeG   I think I'm going to try making this chat window bigger and the participants window below smaller - what do you think?
jfurman   Drinking barium is not fun.  
DavidOhio   Good idea MikeG  
ronmoffett   Guys- good idea Mike   
MikeG   true!  
GregF   Mike I like that idea  
TomK   Good IDEA  
ronmoffett   All - I wish you well. I need to jump off and get my dog to the vet. Be well
DavidOhio   Take care Ron  
MikeG   I’m also looking into other means for forums and mass mailingapps that are free (or very little cost) to make the KDA better. Kunenaand PerfectContact Form are two that are under consideration now.  I would like to be assured we can export fromour old apps into the new ones before we proceed with KDA Board presentations.  If you have Joomla experience and would liketo join our tech team, please contact the KDA. None of us are experts and can always use help… thanks!
MikeG   later, Ron  
TomK   Ron keep the Dog Healthy he is a Friend for Life  
jfurman   I got to go also talk to you all next month.  
Gary_KC   Mike, if you can large characters, it is much easy to use w/o reading glass.
DavidOhio   It has been great chatting with all of you today, until next time stay vertical!
MikeG   I'll take a look at that too.  Good suggestion.  
MikeG   I gotta run too.  Take care everyone.   
MikeG   Good chat this morning!!!  
TomK   Tell our Next   
Gary_KC   Have nice days, all. Bye now.  
GregF   Have a good month guyss