Davis Phinney is a Good Guy.  

The retired cyclist has found a way to make sense of the disease for himself and become a source of information and hope and possibly even an answer by funding research for those diagnosed with PD.  I  went to the Victory Summit in Phoenix today not really knowing what to expect.  Considering I didn't have any expectations, it's all the more depressing to be disappointed.  I was by far the youngest in attendance and that made me feel alone in a room filled to capacity.  I learned a few small things and I got a more thorough understanding of the forced exercise experiments.  Those experiments have lead to the push for intense exercise, I think.  The lectures, some good, some not so good, were interspersed with some crazy "exercise", dance, and worst of all "laughing yoga".  Laughing yoga consisted of the whole room full of people forcibly laughing without cause like demented hyenas.  I get that there's some science behind it but seriously, it was disturbing.  The enthusiastic crowd engaged in what could only be described as a Parkinson's Pep Rally.  They ate it up.  It was almost like they were glad to be part of an exclusive club.  I don't get it.  Parkinson's stinks.  I wanted to cry, punch somebody and leave.  I didn't cry right then and I thankfully didn't punch anyone.  I did in fact leave before the conclusion of the summit after realizing that the early onset break-out session wasn't going to have any of my peers in it since no one was a day under 60 years old.  Plus, it was billed as an uplifting and encouraging session.  I'd had about enough of that.  

A look at laughing yoga.  No, she didn't just hear the funniest  joke of her life.

I don't need:

• a cheerleader!  
• to be told to be my own informed advocate!    
• to be encouraged to exercise!
• to be reminded not to give up!

To quote what the kids are saying these days,"Duh! Obviously!"  I'm willing to admit I march to my own beat sometimes.  If  the other people in the room needed that, great!  I'm glad they got what they needed but not me.  In addition to what I didn't need, I didn't want to see what may or may not be next for me down the road reflected in the faces I saw.  What do I need and want?  What I can't have, of course.  I'm a planner.  I need a peek into the future so that I can see exactly what my future self will be dealing with and plan accordingly.  No one gets that.  I want to know if some of my weird little quirks like not noticing anything seen out of the eye on my affected side are Parkinson's related.  For me, an out and back walk contains two different sets of scenery: the view out of my left eye going up the street and the other side of the street when I'm on my way back.  Even if I find out it is or isn't a symptom who cares?  But I wonder.  I wonder if my kids are going to inherit this from me.  Would we even want to know?  Maybe. I need to know if there's anything else I should be doing.  The problem with unproven complimentary therapies is they're expensive and it's easy to fall prey to every snake oil salesman selling false hope.  

What Now?

I'm done with Parkinson's.  I know it's not as easy as that and I don't mean I've found a cure.  I mean that I'm done giving it more attention than it deserves.  I don't want to make it my life's work.  I've faced it.  I've conquered my abject fear of it but continually dwelling on it is making me crazy.  I don't want to devote my personal training career to it.  I love my job too much for that.  I don't want to be a parkie expert or celeb.  I don't need to attend any more support groups.  When I told my boss this the other day I immediately felt like I removed the millstone from around my neck.  I'm going to do what Dr. Bose said I should do when I asked, "what now?" immediately following the dreaded diagnosis.....Live Your Life!!  

What's Next?

The next task at hand is to call the outdoor adventure school for people with disabilities and tactfully ;-)( not my strong suit)- ask about the average functional level and age of the other participants in the upcoming ski trip.  I need to know exactly how much of the time is going to be devoted to talking about Parkinson's.  I couldn't hack a whole day of it and the last thing I want to do is be stranded in the middle of nowhere subjected to an all Parkinson's all the time show for 5 days!  

I'm willing to admit I might be wrong about all of this and I reserve the right to change my mind later.  Thoughts anyone?