My World of Parkinsonian Delights

You Never Miss the Dopamine Until the Brain Runs Dry

“You Never Miss the Dopamine Until the Brain Runs Dry.”  Catchy title for my next book.  Except there ain’t gonna BE a next book.

Oh, don’t blame yourselves.  A few of you actually DID purchase a hardcover or paperback or Kindle or ebook cover of either “Deep Brain Diary” or “No Doorway Wide Enough.”  And as soon as I get my meager royalty checks for those purchases, I’ll cut a fancy check for $45 each to the National Parkinson Foundation and the Charles DBS Research Fund at Vanderbilt University Medical Center.

My mistake was misunderstanding the market.  And this would also explain why I had to take the self-publishing route.  Agents KNEW folks wouldn’t be interested in a patient’s first-person story about Parkinson’s disease.  Publishers KNOW your name has to be Michael J. Fox before they’d publish such a book because otherwise they’d be wasting their money printing a book written by some unknown mook where the ultimate outcome for the writer would likely be worsening disease, dementia and then death.

I mean, Jesus!  Who wants to read a downer book like THAT when there are Vampire/Werewolf movies and Harry Potter and self-help books about how you can stop dating the wrong kind of man out there?

I’ve written about this before.  You don’t see telethons for Parkinson’s disease because there aren’t any cute, chubby little children with Parkinson’s for Jerry Lewis to roll out on a wheelchair to make you feel sorry for.  You don’t see a coordinated “Susan B. Kolman Race for the Cure” effort to raise money for Parkinson’s research, because there aren’t a whole lot of vigorous folks at this stage of PD who look bright, clear-eyed, and seem otherwise healthy and vibrant except for that killer cancer that your donations will help cure.  You don’t see a national campaign for Parkinson’s like you do for Autism because, for God’s sake, Autism happens to KIDS!  And who wouldn’t want to do something for the KIDS?  You don’t even see the kind of campaign that the ASPCA has on TV now with the sad puppies and kitties in cages because who WOULDN’T feel sad about the sad puppies and kitties, and the little kids in Africa who have to get their daily drinking water from a stream full of water buffalo excrement, or little Maria Guadalupe who can’t go to school because she has no shoes?

Best WE could do would be to show what Parkinson’s does to people.  And since consumer testing shows that, by and large, people don’t LIKE even LOOKING at old folks… even HEALTHY ones… that idea is a loser.

Look at your TV, for God’s sake.  Even the commercials that cater to the elderly show older folks who look like they could run a 5K without even bothering to stretch first.  Long, lean women with a few wrinkles and nicely greyed hair.  Handsome, rugged men with rippling muscles and a thick crop of silver on their heads.  THAT’S what the public WANTS to see in its old folks!  THAT’s the image that SELLS!

Maybe if we concentrated on Young Onset Parkinson’s Disease.  Show folks how 10 years of Parkinson’s can turn this…

A happy, carefree guy, loving life (and apparently a plate full of veggies and fruit or something)…

Into… this…

A guy with just as much going on upstairs as before, as bright, as intelligent, as witty as he ever was, but due to Parkinson’s masking, he can’t show the emotions he’s feeling,  He has trouble sitting up straight, he’s fully aware of how his body is betraying him and he tries to be cheerful about it — hell, he even wrote a BOOK about it — but to the public at large he’s just another old man who shuffles when he walks with his cane or his walker, who stops and freezes when he comes to a doorway or a narrow passage or a change in the pattern on the floor, or a change from a level to a sloping surface.  Just another old guy.  Why bother.  Old people are gonna die anyway.

Except, I’m not old.  I’m 55 years old.  I’ve had this bastard of a disease since I was 45.  And if this year is like any other, 50,000 Americans… many of them in their early 40s… will ALSO get this diagnosis.  And in 3 years, 5 years, 10 years, YOU could look like this… OK, maybe not quite so chubby and with a bit more hair on your head.  But you get the picture.

And THAT is why you SHOULD CARE!  If not for altruistic reasons, for SELFISH reasons.  Don’t wait for your dad or mom, your uncle or aunt, your brother or sister, your cousin, your SON or DAUGHTER for God’s sake, to tell you, “The doctor says I have Parkinson’s.”  CARE ABOUT IT NOW!

Here’s where you can get more info.

The National Parkinson Foundation
The Michael J. Fox Foundation
The American Parkinson’s Disease Association
The National Institute of Neurological Diseases and Stroke

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2 responses

  1. Hunter

    Hello, I am a 15 year old boy, who has a love for neuroscience. I have personally been diagnosed with a number of ‘disabilities’ as they’re called. The labels aren’t as bizarre as they were 10 years ago, because now everyone has them! woo! But seriously, for a long time I had some sort of autism. This is when I was around 8 however- I have matured physiologically and I don’t know why! I’m no longer trapped in my mind, I can express things… I can now even flourish socially and academically. If you look at me today you could never guess that I had EEGs and MRIs once a month. I know this sounds narcissistic, but I am simply telling you MY story so I can share something with you. The Brain, it works in strange ways. It’s bizarre. Look, have faith… I am a hardcore atheist, but sometimes faith just works. Lock something up long enough and it’ll find a way out. A large sum of the processes your brain makes aren’t even recognized by you. There’s escape. There are ways around ‘disabilities.’

    July 17, 2010 at 11:11 pm

  2. Pingback: We Get Letters... | Parky Bill's PD Place

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