Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I found the superbly informative KDA site intially by googling Kennedy's Disease. The chat rooms are very informative and inspiring."

2016 Chat Room Transcripts

Topic: Open Forum  
     
DavidOhio   Good Morning all it's cloudy here this morning
GregF   Good morning gentlemen 
Gary_KC   Good morning.
Gary_KC   It is 38 degrees with cloudy this morning in Overland Park, KS.
DavidOhio   And we have very good news, our grandson Nathan (Nate) was born on 11/30/16 Momma and baby are home and doing well.  Mike's parents are heading to Chicago today and Margy and I will head that way next Sunday.  Can hardly wait to meet the little guy in person.
GregF   sunny and 21 here in eastern Colorado
GregF   Congratulations 
Gary_KC   David, congratulations!
GregF   David Is this your first grandchild
DavidOhio   Yes he is our first. .
GregF   The first is always special 
ronmoffett   Good Morning Men
DavidOhio   The news from the conference has been positive and there are some of the presentations available on the website.  I have not had time to review any of them have any of you looked at them?
ronmoffett   David, a big congratulations. This is wonderful news. The wait is over.
ronmoffett   I put them on the website but just glanced at them. I need to go back and look at them when I have more time. I thought the pain one was interesting because I have a lot of pain and never heard it addressed much with KD 
DavidOhio   Thanks for all the good wishes.  Yes Ron the wait is over and the fun begins for the whole family.
GregF   David where do we find the presentations on the website
Gary_KC   David, yes, it was uploaded 6 research presentations in KDA web-site. It is very interesting information, isn't it?
DavidOhio   https://www.kennedysdisease.org/index.php/share-information/kda-conference-events
GregF   Thank you
Gary_KC   I am glad that we have some clinical trial candidates.
DavidOhio   Ron was there any particular tip on pain management that you intend to try?
ronmoffett   Yes. that's hopeful
ronmoffett   I will try anything.Right now. Heat helps a lot and Tylenol. I have just started exercising lightly and meditating. I think this has helped.   
ronmoffett   Does anyone here have a problem with pain like I do ?
jfurman   I have been doing aqua therapy, and it helps.
Gary_KC   ron, what kinds of pain do you have?
GregF   My pain is usually from the center of my thigh to the center of my calf, on both legs
ronmoffett   jfurman - whats aqua therapy ? And, where do u go ?
jfurman   to the local health club pool. and it is mostly stretching exercises.
DavidOhio   ronmoffett the system seems frozen today or maybe it's just mine
ronmoffett   Gary - I have muscle pain. I have a lot of pain in my thigh muscles. Sometimes other areas but mainly the thighs.  
jfurman   I had a phisical theripest develop the routine. 
ronmoffett   David - I am not experiencing any problems. Are other programs/windows running on your computer ?
Gary_KC   ron, I see. I have numbness.
ronmoffett   jfurman - is it a heated pool ?
jfurman   yes. about 85 deg.
ronmoffett   jfurman - Very nice. I am looking to maybe find a club where they have a sauna and heated  whirl pool. I find this helps me a lot.
DavidOhio   I dropped out and returned, all I could see were my messages out and now I see that the conversation continued for a time without me.  Oh well it is good to be baci
jfurman   I do about an hour a day, 3 days a week.
ronmoffett   jfurman - sounds nice. I forget where u live. r u in a cold climate.
ronmoffett   David - glad ur back.
jfurman   Eastern Kansas
DavidOhio   I also have a fairly regular exercise routine and experience low level pain primarily in my hips.  I take one naproxen sodium (Aleve) tablet at night to help me get to and stay asleep
ronmoffett   jfurman - the weather isn't that warm then. I think u guys get a descent amount of snow. Am I correct ?
ronmoffett   David - does Aleve make you tired at all ? 
jfurman   Yes, most years.
ronmoffett   jfurman - the snow can make things tough on men with KD. In Illinois here, we have a fair amount of snow.  
DavidOhio   Since I only take it regularly at bedtime if it makes me sleepy that would be a good thing.  There have been times (when I have been stubborn and done too much) when I have needed it during the day and have not noticed any side effects.
ronmoffett   David - did ur dr. tell u about Aleve ? 
DavidOhio   No it was actually my wife's go to pain med after an injury several years ago and she convinced me to try it instead of ibuprofen
DavidOhio   I think that both of those pain meds are anti-inflammatory drugs and therefore tend to work better than Tylenol on muscle pain.
ronmoffett   David - I think ur right. I get confused on the difference between Ibuprofen and aleve.
DavidOhio   one the brand names for ibuprofen is Advil they are different chemical formulas and each one can work better for some people
ronmoffett   Anyone traveling for the holidays ? Or, having family come in ? 
GregF   I believe that our kids are coming home for Christmas. Will be great to see them 
DavidOhio    Yes as long as little Nate makes good progress, our Chicago threesome plans to come to Lebanon for part of the holiday.  Mike had vacation time to use or lose and so they want to come home if possible to see more of the family
ronmoffett   Greg and David - sounds nice that you won't have to travel. I will be around here. Usually I try and get into Wisconsin for a couple days to relax between Christmas and New Years. 
GregF   Its always good to get away and relax. 
GregF   Well Gentlemen I need to go, I hope you all have a merry Christmas and a great new year 
Gary_KC   Thank you, Greg. Have wonderful holiday season, too.
DavidOhio   I wish you all a very Merry Christmas and Happy New Year!  Until next time stay vertical!!!! 
ronmoffett   U too Greg
ronmoffett   Yes. Happy holidays to everyone. Be well.