Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA is an excellent group of caring and dedicated members that are always there if more support and hope is needed."

2017 Chat Room Transcripts


Topic: Open Forum  
ToddAllen   Good morning Ron!
ronmoffett   Good Morning - how are you feeling ? 
ToddAllen   I'm doing well, yourself?
ronmoffett   Doing ok - enjoying this slightly cooler weather. refreshing
ToddAllen   I wonder if we could do more to promote these chats.  Attendance has been light...
ronmoffett   There is a pattern where if the 1st saturday falls on a holiday weekend or its the first day or two on the month. Attendance is down, 
ToddAllen   Forgot it was a holiday weekend.
ronmoffett   Not sure how to avoid the holiday weekends with the chat schedule  
ronmoffett   Any plans this weekend ?
ToddAllen   Probably best to just stick to the regular schedule.
ToddAllen   Sara, my wife is a school teacher.  Her first day of the year is Tuesday.
ronmoffett   Yes, probably so - if it was changed. People we be confused
ronmoffett   Wow. That is very late - must be Chicago. My son started 2 1/2 weeks ago 
ToddAllen   So we are spending the weekend getting caught up on house projects we can do together before she resumes work.
ronmoffett   This is her first year - correct ?
ToddAllen   She was in a certification program last year.  She worked as an assistant teacher in a classroom, but this year she will be on her own.
ronmoffett   Thats what I thought. I hope she enjoys it What school ? 
jackj   Good morning from Southern California
ToddAllen   She's at Herzl, a K-8 CPS school, she'll teach 7th & 8th grade science.
ronmoffett   Good Morning Jack
ronmoffett   Where is it ?
ToddAllen   Hi Jack!
ToddAllen   It's on the west side, 3711 West Douglas Boulevard
ToddAllen   Hi Sarah
ronmoffett   Men, I wish you a Happy Labor Day weekend. I need to jump off and drive my son to work. 
jackj   Good to hear you Ron, have a good one
ToddAllen   Bye ron.
jackj   Has anyone else seen the article in Bruce's blog about the new treatment for SBMA approved in Japan
ToddAllen   No Jack, but I'll look for it.  Any details of the treatment?
jackj   There is actually a lot of info and it is very encouraging.  It is called LeuplinSR and is given as an injection once every 3 months
jackj   Apparently it is able to suppress the progression of SBMA.
ToddAllen   Yes, just found it on Bruce's blog.  This one has been in testing for quite a while.  Looks somewhat helpful.  It slows progression but blocks testosterone which does have some drawbacks too.
jackj   I saw that too, and there is no information in the report that shows what that means. Bruce comments that he would like to hear what Dr Fishbeck and the other researchers think 
ToddAllen   Hopefully results of early adopters will be tracked and published.  I'd like to know how it works out for others before giving it a try myself.
ToddAllen   I've been trying a drug, pioglitazone, shown beneficial in KD mouse models, but not yet tested in people for KD, though it is a common med for type 2 diabetes.  I'm borderline diabetic so my doc and I thought it worth trying.
jackj   I can relate to that.  Our son who has SBMA,is 40 with 3 kids.  I'm sure he will have similar feelings
jackj   Sarah, if you don't mind me asking, what is your connection with SBMA
ToddAllen   The downside is it promotes weight/fat gain.  I gained 10 lbs in the first 3 weeks, but also gained some muscle.  I stopped the drug and dieted for a month and lost the fat.  Just resumed the drug a couple days ago.
jackj   It is an experiment isn't it.  How is the exercise program going that you spoke about in San Diego?
ToddAllen   I've had ups & downs but more ups over all.
ToddAllen   At the end of May I attempted jogging.  Made it about 15 feet when a leg buckled and I tore cartilage in my left knee.
ToddAllen   I had to stay completely off of it for 3 weeks and lost strength and gained weight, but since then I've almost recovered to where I was.
jackj   Oh man!  That must have been hard to take!
ToddAllen   Fortunately, I didn't need surgery and expect a full recovery, though cartilage heals very slow.
jackj   It sounds like you push yourself very hard.
ToddAllen   I've been very focused trying to regain/maximize my health.  Sometimes I misjudge and go too far.
jackj   I remember when you introduced yourself in San Diego, and stated that you had walked all the way from the airport to the Hotel with your luggage.  That blew me away!
ToddAllen   Jack, how is your son doing?
ToddAllen   I was contemplating trying it this year in DC, though it is 5 miles this time and it was only 2 in San Diego.  I'll probably take the free hotel shuttle.
jackj    He is living his life.  Works hard as a software developer.  Loves his wife and kids. he seems to be doing better now that he understands what he is dealing with.  the symptoms seem to have decreased a bit. 
ToddAllen   I'm working on a presentation for this years conference called "Metabolic syndrome and Kennedy's disease".  Turned up an interesting statistic at the CDC, roughly 25% of American seniors (65 and older) are diabetic almost another 50% are pre-diabetic.  Diabetes is a major risk factor for both nerve and muscle degeneration.  And men with KD are at higher risk of developing diabetes.
ToddAllen   That's good to hear.  I'm a former computer programmer, used to make video games.  I'm considering going back to it if I can improve my health a little more.
ToddAllen   It was good talking to you Jack, hope to follow up next month.  I've got to go for today.  Goodbye!