Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

2017 Chat Room Transcripts

Topic: Open Forum  
jackj   Hello Ron
ronmoffett   Hello Jack. How are you
jackj   sorry for the delay.  Are you planning to go to the meeting?
ronmoffett   No, I won't be there this year. How about you ? 
jackj   That is a long way for us to go.  We will probably catch the West Coast ones.
ronmoffett   Thats understandable. Were you at last years conference ? 
jackj   Yes.  we met a lot of great people in San Diego.  It was good to meet men with the disease , their spouses, and of course the researchers
ronmoffett   Did you attend with your son ?
jackj   Our son Joe, was diagnosed a few years ago.  He is 39, with a wife and 3 kids.  
ronmoffett   This is what I remember. I didn't realize he was this young. How has he been doing ?
jackj   No.  He seems to just want to get on with his life and not really dwell on it.  Now that he understands the importance of  getting rest and keeping the stress level down, he iis doing much better.  
jackj   Jenny and I keep him informed.
ronmoffett   Thats good. Is he still able to work ?
jackj   He is a software developer for a tech firm in Palo Alto, and seems to be doing very well.
jackj   incidences like dry drowning are now a pretty rare occurrence for him.
ronmoffett   Thats good. Thats a stressful job but not that physically demanding like construction. I can see where its important to keep the stress level down.
jackj   He has no problems walking and is active with his kids.  We count our blessings
ronmoffett   The dry drowning can be hard. I have episodes of it once and awhile 
ronmoffett   Hopefully he can stay walking for a long time. What made him get tested for KD ?
jackj   yes. It was very scary when it first started and he didn't know what he was dealing with.
jackj   fasiculations  and other stuff.  It took many doctor visits and painful testingbefore one of them figured it out and had him tested for KD
jackj   How are you doing?
ronmoffett   Sounds like the path I took to get diagnosed
jackj   how old were you when you were diagnosed?
ronmoffett   I am doing ok. Like your son. I am trying to keep the stress level down. Looking to try and move to a warmer climate
ronmoffett   I was 50
jackj   did you have symptoms for many years before that
jackj   why are warmer climates better?
ronmoffett   Yes. I was never quite right if you know what I mean. I finally decided to try and figure it out. It felt like someone was choking me most of the time with there hands. Finally had enough and spent a year getting a diagnosis.
jackj   That must have been very difficult!  did your mom have any symptoms?
ronmoffett   Most of the men I talk to with KD have issues with the cold where there fingers don't work. And other issues. I believe it has to do with blood supply and the movement of the supply in the body when it gets colder
ronmoffett   No. Not that I could tell.
ronmoffett   Some woman show symtoms. Some don't
jackj   Thanks for being so helpful, Ron.  My wife Jenny has been here with me asking questions.  I know we have run past your time
jackj   Thanks a lot Ron, you too.