Turning and turning in the widening gyre
    The falcon cannot hear the falconer;
    Things fall apart; the centre cannot hold;
    Mere anarchy is loosed upon the world,
    The blood-dimmed tide is loosed, and everywhere
    The ceremony of innocence is drowned;
    The best lack all conviction, while the worst
    Are full of passionate intensity.

    Surely some revelation is at hand;
    Surely the Second Coming is at hand.
    The Second Coming! Hardly are those words out
    When a vast image out of Spiritus Mundi
    Troubles my sight: a waste of desert sand;
    A shape with lion body and the head of a man,
    A gaze blank and pitiless as the sun,
    Is moving its slow thighs, while all about it
    Wind shadows of the indignant desert birds.

    The darkness drops again but now I know
    That twenty centuries of stony sleep
    Were vexed to nightmare by a rocking cradle,
    And what rough beast, its hour come round at last,
    Slouches towards Bethlehem to be born?

   - William Butler Yeats (1865-1939)*

Yeats, by offering this poem in the aftermath of WWI, was sounding quite an alarm. Ominous forebodings, or a cry to transcend the mania and chaos of the day? It's worth considering, unless you would prefer to watch the world burn. Popcorn, anyone? Apart from the cool hair and trademark glasses, this Nobel Prize-winning Irishman is popular for his distinct brand of complexity. While modern reality show hosts offer everything exposed(have we actually seen inside the intestines of all the Kardashians yet?), the more private writers and famed characters of yesteryear preferred to play a bit more coy. We've got to work for it here, with exception of one line, and it is impossible to mistake:   

"The best lack all conviction, while the worst
    Are full of passionate intensity." 

Joan Didion isn't the only author to give old William Butler a nod... for good reason. ** Getting louder and more absorbed in our small selves has never worked out, for anyone, in any century. A game of charades masquerading as power. If we get quiet and listen, we might be able to hear rumblings of virtual thunderclap, before the sky explodes to remind us we aren't exactly (even remotely) in charge. The world has become too loud, younger generations are obnoxious and everything is spinning out of control, you say? It's true, the pace of life is intensifying. Throughout history these cycles have been repeating and we never seem to learn. All of humanity toppling on the brink of destruction, then flush... and so it goes. What if these various clown shows are flimsy props to distract us from a shocking reality we'd prefer not to know about? It's never as complicated as our egos like to pretend. Fear does seem to be causing despair and anxiety, but if you have an incurable disease your worst fears have already come true. 

Not everything is progressive or incurable, but Parkinson's (currently) falls under this category. It's just cruel. Life is obviously complicated, when relatively healthy people graced with every kind of luxury are languishing in ever deepening misery. Humans are traditionally hardwired to focus on what is "wrong", scanning the horizon for potential threats. I'll refrain from regaling you with details of such research, but it's no secret that the cave-dweller portion of our brains cannot be expected to run smoothly- not at our current pace. Desperately in need of an update, yet forced to juggle nine tasks simultaneously. Our sense of responsibility and self-importance is more bloated than Jabba The Hut, and the sheer volume of incoming information is clogging the pathways like a rush hour in Beijing. As if a brain disease doesn't cause enough confusion, we must  find a way to function in this frenetic society. The brain is slowly turning to swiss cheese. 

Chiropractors must love the distracting mobile devices too, due to everyone craning necks down and forward. PwP already have a tendency to lean forward, and in later stages we can easily become hunched if we fail to stay flexible. Everything gets tighter and slower. Hunted by lists of things to do while moving ever more slowly makes for frustrating weeks. We keep falling into the quicksand, but at least we are no longer actually being chased by wild animals. I can't even get the top off the almond butter, how am I supposed to get away from a charging tiger? Epinephrine (adrenaline) and norepinephrine, and that other "ine" that makes Parkies swoon and cringe, simultaneously: Dopamine! Ah, sweet dopamine, the pleasure reward neurotransmitter that is produced in large amounts when you fall in love or first engage in addictive behavior, like gambling.

Psst, wanna go to Vegas? 

Those of us living with disease must jockey expensive medications AND a constant stream of rapidly changing symptoms (and raise children and get to work and endless chores and be many things to many people and have ample QT...) How about you try living in a straitjacket for a week while your mouth is filled with marbles, then you can explain in another language, backwards, why you are struggling. It's enough to make you shake. The medications necessary to hold tremors (and a host of symptoms) at bay actually cause dyskinesia*** and other potentially scary side effects we'll be discussing in detail. Often after a nervous giggle or two, I'll hear something along the lines of, "You have Parkinson's? No way, you are too young! You don't shake like Michael J. Fox." This is a common assumption, so let's review a few basic facts: 

Parkinson's presents uniquely in every body, and is probably going to be subcategorized into several variations. If you've met one person with Parkinsons's, you've met one person with Parkinson's. PD rarely causes obvious shakes in my body, so most people can't see the problem. Dystonia is more my jam, though dyskinesia is more obviously associated with PD. This progressive condition is challenging to manage, and is constantly shifting it's rabid assault on our capabilities. It's a small miracle some of us can find our keys and the energy to get out of the house.  A bit of relief comes with exercise and various treatments, and it's even rarer to meet PD patients who are thriving sans drugs, especially prior to the option of DBS.****

It may sound like a luxury, but if you are living with a disease, I maintain that you require an advocate for healthcare and prescription management. After being misdiagnosed so many times, I do my own research, while actively learning to seek help whenever possible. It might be a friend who is not a healthcare professional, but you'll need support at the more obscure crossroads. Your PCP and Neurologist each see you only a few times a year. It's not enough, and we'll need more resources as unpredictability and Parkinson's go together like peanut butter and chocolate. Currently, I'm researching various health advocacy options for those in all stages of chronic disease, and will in time add valid links. I lost an entire day today, attempting to explain codes and acquire the correct paperwork and authorizations. My healthcare company denied my claim because they insisted my '3' was an '8' in the code lines. Apparently they have no idea about micrographia. *****

Unless it's "approved" and currently on the market, it's not helping patients directly. A lot of medical professionals aren't dialed in to their own specialty, let alone the nuances of a brain disorder. How can we expect our friends and family to understand what this is like, without offering information? I waited an entire year to alleviate crippling kidney pain only because healthcare, an office of distracted and rather indifferent urologists, and a landslide of misinformation kept the truth hidden deep in my gut. Trust your own gut, always. You know the answers. I am getting stronger and will enjoy visits from optimal health again. You can do this too, if you really want, but you'll have to remain a bit feral and wild. When you are told to sit down and go along with status quo or a medical opinion that doesn't work for you, it's time to start asking questions. You matter, and your vibrant life is worth this extra work. Please stay wild. What will you do with your "one wild life"? ******


*Yeats manuscript

Note below, the name of the author cited is Thomas Parkinson:

Yeats, William Butler. "Michael Robartes and the
Dancer" Manuscript Materials. Thomas Parkinson and
Anne Brannen, eds. Ithaca, NY: Cornell University
Press, 1994.

**Joan Didion

In deep admiration for my amazing sister, Naomi Didion Davis, and her cool Aunt:

***Dyskinesia is mean

**** DBS



Mary Oliver, goddess of everyday magic and presence. Oh yes... and poetry: