Parkin’ it Right

Where Emma ponders motivation, sickness, autumn, death, adulting

Sep 07, 2023

Welcome to this month’s Who Stole My Dopamine? rundown where Emma swears profusely at the world’s most irritating disease.

Hello to all the new faces around here, delighted you too spend your days debating whether you can wash the dishes OR clean your teeth OR tie your laces…All three?! What madness.

with love

Emma x

This month’s issue:

Motivation

Motivation, that once dependable friend, often decides to play hide and seek in the world of Parkinson's. It's not laziness or disinterest; it's a neurological quirk that leaves us frustratingly apathetic. This apathy can be especially maddening for those who once led bustling, full lives. It's like having the fire in our belly replaced with an empty void.

Every day can feel like a tug of war with ourselves. We want to seize life with the same enthusiasm as before, but Parkinson's has other plans. It's a battle against our own brains, a relentless challenge to reignite that spark.

My Monday morning tweet on motivation created quite a lot of chatter you can read it here.

Read more about apathy as a symptom here.

Do I Look Sick Enough?

In the absurd world of Parkinson's, looking "not that sick" is practically an Olympic sport. It's a peculiar struggle that many of us in the chronic illness club experience - a pressure to appear outwardly as unwell as we feel. But here's the kicker: when we do showcase our true colours, it's often met with shock, as if we've just flashed our leopard print knickers.1

We sport the poker face of a lifetime - even on our worst days. Don't get me wrong, it's good not to wear suffering like a neon sign. But this, dear reader, comes with its own set of crap.

The unwritten rule that says we should look and act like a walking medical dictionary to legitimise our chronic illness. It's as if society expects us to stroll around with a giant "SICK" banner, complete with flashing lights. But in reality, we're more likely to be mistaken for stottering drunks than patients battling a relentless foe.

When we have those rare, "good performance" days – days when we don't resemble a zombie – it can leave folks confused. It's as if we've shattered their illusion of chronic illness like we were supposed to maintain a level of suffering that matches their Netflix dramas.

But in reality, we carefully choose when and how to reveal our true selves in public. It's a skill we've fine-tuned to avoid the bewildered stares and sceptical side-eyes.

But we can't seem to win. If we look too well, we're met with raised eyebrows and suspicion. If we dare to unveil our authentic struggles, we risk turning a casual conversation into an impromptu therapy session.

I'm too exhausted to give a flying fuck about societal expectations. Too busy wrestling with tremours, stiffness and the wild Parkinson's ride. There is no energy to play illness dress-up or cater to someone else's idea of what sickness should look like.

So, to those who raise an eyebrow when we dare to have a "good day," and to those who are left agog by our "appallingly ill" moments – here's a nugget of wisdom: we can't win this game, but we're too busy existing to give a shit about the rules.

The Changing Year

As summer fades into autumn, I thought I was in for a smooth transition. Nope - Bloody Parkinson's.

It’s the end of the summer holidays, a fresh school term dawning. The excitement in the air is palpable and teenagers everywhere are driving the parents to murder. But the day the buggers return there is a tang of autumn in the air and suddenly the year has changed.

Parkinson's and heavier clothing are like a slapstick comedy duo – a general disaster. The moment you lay eyes on those chunky sweaters and warm, cosy jackets, your limbs decide to go on strike when you most need them. Buttons become the enemy, zippers arg, and don't even get me started on shoelaces. It's like trying to perform intricate surgery with spaghetti for fingers. A minor skirmish with a pair of socks can escalate into a full-blown clothing fiasco.

Just when I'd thought I'd successfully embraced autumn fashion (or at least got my socks on right), Mother Nature decided to pull a prank. "Indian summer," she says, as the sun starts roasting everything in sight.

Here I am, sweating like a glass of iced tea in a sauna, wondering if it's too late to enrol in a nudist colony.

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What Happens When I’m Gone?

A tweet stopped me in my tracks the other day. It was from a man who had lost his wife, leaving him to manage a young family while grappling with his own Parkinson's battle. It made me pause and ponder, not just about my own struggle, but about the intricate web of responsibilities and emotions that surround us as we journey through life with this condition.

It's a sobering thought, you know. Contemplating how my family would fare without me. The mere notion of it can be daunting. It forces me to confront some uncomfortable realities, like the power of attorney, wills and organised funeral arrangements.

Discussing these topics feels like I'm inviting death to sit at my kitchen table, sipping tea and discussing departure logistics. It's not the most uplifting conversation, I'll admit, but it's a necessary one. These preparations can actually provide a sense of relief.

They ensure that when the time comes, my family won't be left juggling the chaos and grief amidst paperwork and decisions. They'll know that everything is in place, that I've done my part to make their lives easier during a challenging time.

I have no intention of shuffling off the mortal coil just yet. There's too much wine to enjoy and Italy awaits with its cobblestone streets, hearty pasta dishes and sun-drenched vistas. Life, with all its quirks and challenges, still beckons and I'm not ready to say goodbye to its countless adventures.

Even in the face of Parkinson's, we're not done making memories and savouring the pleasures of life.

Wait, I’m an adult?!

Remember when we were kids, and all we wanted was to grow up and be adults? Yeah.

Here we are, adulting like champs (or at least attempting to) and it's like trying to ride a unicycle while juggling flaming swords.

First of all, there are bills, bills and more bills. It's like a never-ending game of financial whack-a-mole. You pay one and three more pop up to take its place. Wine required...wine: the official sponsor of adulting.

Then there's this thing called responsibility. It's like a clingy toddler that refuses to let go. Now you're in charge of everything – making sure the house doesn't collapse and being a full-time handyman. Shopping...it never ends, childcare ohh god, hand me the wine.

And let's not forget about making big life decisions. It's like playing a never-ending game of "Choose Your Own Adventure," only with higher stakes and way more uncertainty. Should you buy that house? Switch careers? Get married? The wine aisle at the store suddenly becomes your own personal advice column.

And then, just when you think you've got it all figured out Parkinson's pops up and adds a whole new layer of absurdity. Suddenly, simple tasks become elaborate dance routines and you find yourself starring in your own slapstick comedy.

But you know what? One thing adulthood has taught us, it's that laughter and a good bottle of wine are the best survival tools in our arsenal.

Cheers!