Boys Are Different

I was going to title this one "Boys are Weird" but I've been to church today where they've spent the last month dissecting relationships, marital relationships in particular.  So for me, top of mind is the thought that we're supposed to be different, that's what makes it work. 

I've been married to my wonderful husband for over 18 years.  He lets me be who I am and I even think he loves me for it.  He's a pretty quiet, creative and passive guy and the last place you'd find him is in the gym.  If anybody's reading this you can safely say opposites attract.  Attract is a great word too because he's about the only guy who was interested in me based on looks alone.  Usually, I fell into dating my guy friends.  He picked me up at the grocery store while I was working my way through college.  It was very "Officer and Gentlemen", him decked out in his navy uniform coming through my line most every night for six months before he asked me out.  And by "asked out" I mean that he threw his business card at me and asked over his shoulder for me to call him if I was interested while he made a hasty retreat.  Our first real date was to the Navy Ball and it seems cliche but I knew that night that we would be married.  Three weeks later, we were in fact engaged which caused quite a stir in our families.  He was 36, I was 19.  I shake my head as I type that. Couldn't have known then but fast forward to present day, and I'm the only one of my siblings still married.  Sure we've had our ups and downs with two great kids, a couple of moves, and several job changes and most recently some unpleasant health concerns.  Not even going to mention the "P" word this post.  

Anyway, I've mentioned in passing that I was writing this blog to him.  The other night, when he asked what I was doing I told him I was blogging.  The obvious follow up in my mind is, "Can I read it?".  Apparently not for him.  Makes me say hmmmm.  And in the next breath it makes me say, boys are weird.  

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?

Never Let Them See You Sweat

I  pride myself on never letting them see me sweat but now they can see me shake.  I've got a built in mechanism that tells me when I'm under stress- good or bad.   My boss corrected or better yet educated me about a fairly minor point today while I was with a client.  I say minor because I certainly wasn't going to hurt anyone but in the long run his strategy will prove more helpful to the client.  He was right, I was wrong but it bugged me.  I've asked him to please wait to tell me these types of things until later but it's really no big deal.  When he revisited the point later on to make sure I understood I listened intently looking for a way to save face and make some sort of intelligent contribution.  I wanted to turn it into a discussion rather than a lesson.  There wasn't any room for that.  I was getting told and I saw the same insistent look in his eye that he has when he's correcting one of my co-workers on a no-brainer.    He was standing and I was sitting in a chair with my legs crossed over.  I didn't like being in the hot seat and my shaking leg betrayed my annoyance.  I'm pretty sure he noticed the chink in my tough guy armor.    

Keep the Rubber-Side Down!

I look forward to writing every day and it's odd how doing so makes me feel better.  I remember as a kid that I threw out a diary I had started to keep because I knew my mother would find it and read it. Now, here I am writing down my thoughts for anyone to see and examine.  It was such a kick today to get a reply from a fellow blogger who also has Parkinson's.  We have a lot in common as far as our illness and our take on it.  It amuses me that our reaction to diagnosis was to get motorcycles.  When I found his site I also found comfort and inspiration.  I would be overjoyed if anyone were to find the same things here.

Me and my client, Linda on my Honda 750 Shadow 

A parkie driving a motorcycle doesn't sound like it would be a good thing but it's one of the best anti-depressants I've found. I'm a safe driver looking out for all of the road idiots everywhere.  I took the driving class at the local community college too.  I'm reliving some of the best times when I would get to ride on the back of my big brother's bike only this time it's better because I'm in control now.   So far so good!

Can't Keep a Good Girl Down or a Bad One Either

Told ya my pity party would be short lived.  I spent most of today still in a funk.  Every Wednesday I go to see my trainer, Danny.  Yes, even trainers have trainers.  Like anyone else, we can sometimes lack perspective and the watchful, unbiased eye of a professional can be most useful.

During my session things just seemed to click.  I felt coordinated and in control.  He was praising me along the way that felt oh so good. I'm overly wrapped up in the need for his approval.  I finish a lift and immediately search his face for any traces of disappointment or the validation that I crave.

Danny kept a close eye on me careful to monitor my shakes.   The shakes are an outward sign of stress that will betray me every time.  I've learned how to hold onto myself and stand on one foot to make them a little less noticeable.  He asked me how I was doing and I quickly said, "fine:".  I was fired up and I wanted to keep going.  By now he knows his job is as much to rein me in as spur me on.  He made me hold out my hands and I was revealed as the liar I am.  We proceeded with the workout at a reasonable pace so as not to offend my nervous system.  He handles me like I would handle my clients.  He gives me the same well reasoned advice I would give my own clients.  I need him for his expertise but more so I need him to gently remind me that the rules do apply to me.

Yesterday, I was mourning the slow insidious advancement of my decline.  Today, I'm more optimistic and recommitted to the fight.  I'm going down swinging.  Literally.

What's Shaking?

Jan. 16, 2013

So I feel pretty sorry for myself today and thank goodness this doesn't happen very often or at least when it does, it's pretty short lived.  My bestie at work, my partner in crime (P.I.C.),  a beautiful and smart, loud and obnoxious, extremely wise for her age because she's been to re-hab, 24 year old snot, sees to it by giving me no slack and making darn sure I laugh along with her as she laughs at me.   I love her to death and she helps keep me almost sane.  Here's a sample of  our handiwork.

Anyway, I wasn't laughing today.  I cannot and will not ever be able to snatch a 35 pound kettlebell 100 times over my head in 5 minutes.  Most people don't even know what that means and not many people can do it either.  There are worse things in the world to be sure and I feel so stupid sometimes that I let stuff like this get to me.  The snatch test is a minimum requirement for an advanced kettlebell certification.  For those of you who are still wondering what the heck it is, this is a kettlebell.

A snatch is an overhead movement that requires strength, stamina, and finesse.

Observe: http://www.youtube.com/watch?v=2o8gECEjU9U  

I actually sat in front of my poor boss today during a meeting and cried about this.  Mostly I cried because I think the rules shouldn't apply to me.  I've never won an Olympic medal or broke the tape in the Boston marathon but I've been able to accomplish most things I've set out to do.  I'm not bragging.  I get things done it's who I am.  I don't have any special innate abilities other than a strong will and the willingness to work hard.  The thing that makes me so bitter is that Parkinson's disease trumps all of that.  My body will not cooperate with me and it's only going to get worse.

Cheery thoughts huh?  I'm not always so whiny, I promise. Well, if you're still reading and you decide to come back to tomorrow I think I will have bucked up a bit by then and I can fill you in on some of the back story like:

• how I used to be 230 pounds 
• how I ran 2 marathons and why
• why the only good part of this is that everywhere I go I'm told I'm too young to have this disease and  to somebody pushing 40 I'll take what I can get
• how I love my job as a personal trainer so much that I'd still go to work the day after hitting the lottery
• why I got a motorcycle 
• how I can agree to anything ahead of time including a ski trip just for parkies - you know you'll want to hear about a bunch of spazzoids on a ski slope!  

This blog can't and won't be all about Parkinson's Disease.  I've got too much else to say to let this completely define me.