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What’s NEAT About Parkinson’s Disease?

Posted Aug 11 2010 1:56pm
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Wanna know what’s really NEAT about having Parkinson’s disease?

It’s the getting up and walking into the living room to change the channel, but picking up the remote for the TV and not the cable, and changing the channel from “Input 3″ (where the cable comes in) to “Channel 249″ where NOTHING comes in, realizing your mistake, and then having to go one channel at a time back to “Input 3″ so you can see an episode of “Law and Order” that you’ve seen a million times!

It’s the working on a project for work and being distracted by an e-mail, then going back to your project and not remembering what in the hell it was you were doing before being distracted by the e-mail… the having to retrace your steps in the project until you get to the part where it was that you left off.  That’s COOL!

Know what ELSE is neat about having Parkinson’s disease?

Wondering if what you’re feeling in your lower gut is just gonna be gas, or reason to change your diaper.  (But, by God, you’re PREPARED!)

Wondering what you’re going to feel like tomorrow.  Next week.  Next month.  Next year.  10 years from now, God willing.

Wondering if one of your idiot dogs is going to see a rabbit next time you take them out and pull you off the porch, down the steps, and skipping behind them into the woods.

Trying to walk down a hallway without bumping into a wall.  Trying to walk into an open room without freezing in place.  Trying to walk down the aisle in a store without digging a foot into the tile and falling.  The very act of WALKING with Parkinson’s disease requires the concentration of an acrobat!

My wife and I have always been best friends, partners and soulmates since we met in 1988.  I love her with all my heart.  Only NOW we don’t have those pesky “sex” complications that can cause disagreements and discordance in even the most STABLE marriages.  If she’s not in the mood, that’s fine cuz neither am I!  We’re no less affectionate we hug, we kiss, we hold hands (especially outside when it looks like I’m going to fall) and we must tell each other “I love you” at least 10 times a day.  So we’re cool.

When I open my mouth, I never know WHAT the hell kinda babble is gonna roll out.  Or whether or not I’m gonna get stuck on a syllable.  Or freeze up and not be able to say anything.  !  Especially for someone who was a professional broadcaster for 30+ years.

It’s the “keeping people guessing” about what you’re thinking.  Your face stays the same a blank, almost grumpy Parkinson’s mask.  You could be thinking about Christmas and ice cream and soft, fuzzy puppies and carnivals, but your face looks like you don’t have a thought in your formerly pretty little head.  Neat!

…is the support I get from my family, friends and co-workers.  From my mom to my wife, to my brother, to one of my sisters.  Everyone is on the lookout for my well-being.  Even a goodly number of my Facebook friends.  I have cheerleaders!  My neurologist is fantastic.  I don’t feel like just a customer to him.  My wife would throw herself beneath me to give me something soft to land on if I started to fall.  My Mom writes letters to urge me to keep my spirits up.  My sister Becki finds ways to tease and goad me into a good mood.  My little brother Joe… same thing.

And I like the way it’s freed up my creativity to write, to dream, to think.

I’ve written a book about having Parkinson’s .  Have I mentioned that?  I think I may have.  It’s called “No Doorway Wide Enough.”  I think I have also mentioned that 100 percent of the proceeds go to PD research.  I’m not SURE I mentioned it, cuz the damned thing is gathering virtual dust on the virtual bookshelves because people who don’t know me (and a lot who DO) seem kinda SKEERED to read a book where someone writes about his dance with a long-term, degenerative neurological disease… even though as critics have noted the book is funny as hell! I’ve written A LOT of books. ALL of them are funny as hell.  Steven King writes horror.  writes vampire schlock.  writes about teenaged wizards.  writes stories about the and spies.  I write funny shit. This one is the only non-fiction.  So far.

I really don’t like the stuttering, the slurring, the shuffling, the forgetfulness, the difficulty making plans and staying focused, the fact that it takes me longer to type things because I keep mashing the wrong keys with my huge Parkinsonian fingers.  The stuff with my balance sucks, the falling sucks, the occasionally lazy epiglottis that allows fluid into my lungs, I could live without all of that.

I have to life with it.  The alternative is unthinkable. And as long as I enjoy my life as much as I do, I have no real problem with that.

Besides… my doggies would miss me.  (For a minute.)


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