What a boar 🐗

Where Emma wonders if she’s boring

So over on BlueSky (I’m giving it a go) there is a thriving Parkinson’s community and a post caught my eye.

It went something like this:¹

Parkinson’s has made me boring.

I had a moment of clarity today when I saw my wife sigh as I did my usual PD running commentary.

She’s had 5 years of it now. “I’m off”, “I’m on” “Back’s sore” “foot cramp” “can’t sleep” etc etc.

Well now, that threw a whole steaming pile of self-reflective truth in my face.

Six years ago, when I was diagnosed with Parkinson’s, I had no idea how profoundly it would shape my daily existence or how much space it would occupy in the lives of those closest to me.

Before PD, you know, that time lost in the mists of probably mostly bullshit memory. When I could hold court at a dinner party, run after life with a mischievous glint in my eye and carry my share of the emotional weight in my relationships. My world was expansive, filled with the unpredictable and adventurous. Now, it’s become a constant loop of self-reporting: what’s twitching, what’s aching, what’s not cooperating.

Parkinson’s is an insidious bastard. It doesn’t just inhabit your body; it infiltrates your mind. Every stiffness, every missed step, every restless night becomes amplified, pulling your focus inward. You become hyper-aware of your body’s failings and it’s hard not to verbalise them.

You want to share your struggle, not to seek pity but because it feels too big to carry alone.

But what happens when the people around you start to pull away? Not physically, perhaps, but emotionally. What happens when their well of empathy starts to dry up?

My people still love me but I see the quiet exhaustion. I think they miss the me not obsessed with every movement, every moment, every breath. They miss the spontaneity, the ease, the expansiveness.

Chronic illness makes you feel you are whittled down to a series of complaints, doctor appointments, and compromises.

I’ve tried to think of ways to change this narrative. Maybe I can train myself to talk about PD less, to push it to the background of my life rather than the foreground. But it’s not that simple. Parkinson’s demands attention. When your muscles seize or your body refuses to cooperate, it’s hard to focus on anything else. It’s like trying to have a normal conversation while someone is poking you repeatedly with a stick.

I want to believe that I’m more than my disease - that I still have something to offer beyond a detailed log of my latest symptoms.

It’s about having grace, for myself and for those who’ve been walking this path with me. My family didn’t sign up for this any more than I did. We’re all navigating uncharted waters and some days, the waves feel relentless. The emotional withdrawal isn’t a sign of defeat; it’s human. Just like my need to voice my struggles is human.

So, what now? I don’t have a tidy answer. I wish I could say I’ve figured out the perfect balance between acknowledging my reality and not letting it consume me. Awareness is the first step. This moment of clarity is what I needed to start shifting the dynamic, even just a little.

Parkinson’s is a relentless companion, but it doesn’t have to define us. And maybe, just maybe, it’s possible to rewrite this story. To find ways to be interesting, engaging and fun again - even with a tremor in my step and a running commentary in my head.

Boring might be part of the equation now, but it doesn’t have to be the whole story.

Let me know your thoughts and please comment and message.

with love

E xxx

1. Ok, it went exactly like that! you can read the original here.