I can handle my body failing me, but my mind has always been reliable — until now

Over the next five weeks, Weekend’s fashion editor and Parkinson’s advocate Annmarie O’Connor explores what it means to live with a progressive condition in a series of deeply personal essays. Written with the honesty, insight and wry humour that have become the hallmarks of her work, they tell the story of adapting, enduring and refusing to be diminished by a diagnosis

With Parkinson’s disease, time and timings are crucial, from medication to meals. Life takes on a measured metric where routine is king. Picture: Chani Anderson

I do not drive. Maybe that’s a good thing. I remember taking lessons when I was 25 years old and living in Galway. 

“You’re not afraid of speed, Miss O’Connor,” said the instructor as I cornered the winding Spiddal roads. I could feel the car slow to a geriatric pace as he pressed one hand on the windscreen and one foot on the second brake.

“Sorry, I didn’t think I was going that fast,” I confessed. “It’s just this view.” I pointed to the sun-dappled waterfront. “Easy to get distracted.” We switched seats. He drove to the nearest parking lot, and I spent the remainder of the lesson practising three-point-turns.

For most of my adult life, my default setting was full throttle. A type A personality in a demanding industry, I ran on adrenaline, ambition, and a burnt-out nervous system. Photoshoots, fashion weeks, copy deadlines, book launches. No second brake.

Then Parkinson’s hit the brakes. Both of them. I was 48 when I was diagnosed. Early-onset. Thirteen months of symptoms during covid lockdowns. No longer over-scheduled, nothing to multitask. I had time to listen to my body. Time to pay attention to what it was telling me. Time to face my new reality.

With Parkinson’s disease, time and timings are crucial, from medication to meals. Life takes on a measured metric where routine is king. Early to bed, early to rise; take medication five times a day; stay hydrated and well-fed and be sure to exercise daily. 

Every day is January 1, like it or not. Every boundary I set involves a compromise with spontaneity. No quickie glass of wine that turns into a session with friends down the pub. No surprise romantic dinners without checking my medication schedule, and certainly no shenanigans unless medication alarms are your kink. 

This is the price I pay so that I might feel like the old ‘me’ again. All this requires planning and learning to pace myself. Reducing my usual speed so I can corner that hairpin turn. Measured is not lesser. It is, it turns out, how I do my best work.

Annmarie O'Connor: 'Science says Parkinson’s moves slowly because I am young. I say Parkinson’s never met me when I was young. Otherwise, it would crack on.' Picture: Chani Anderson

Frankly, this is hard-won wisdom. In the early days of my Parkinson’s diagnosis, I laboured under the delusion that taking my medication was enough to assuage my symptoms and keep life on an even keel. 

Styling what would be my final photoshoot provided the necessary course correction. The intense schedule and inclement weather, combined with little sleep, almost depleted my battery. I didn’t feel the energy whiplash until I returned home, and I spent almost a week on my sofa. 

I woke every night with restless legs and feet — painful and burning with pins and needles. The discomfort left me no choice but to get out of bed and walk around to ease the sensation.

When I sat at my desk trying to work, those involuntary nocturnal twitches followed, accompanied by dyskinesia (erratic and sometimes painful muscle movements) in my shoulder, neck, and head. 

In a constant state of movement, I took intermittent naps to keep myself recharged. I felt spent both physically and mentally, not to mention anxious about getting work done on time and what this meant for my future.

Not too long afterwards, I removed ‘stylist’ from my LinkedIn profile and from my website. Reality has its price. Fourteen years of creativity and passion — gone in a click. No replacement; just acceptance. A blank space still waiting to be filled.

Measured is not lesser. It is, it turns out, how I do my best work. Picture: Chani Anderson

Acceptance, you see, isn’t about giving up. It’s a neurological process as much as an emotional one: rewiring how I move, think, and imagine what’s ahead. This involves constantly reassessing my physical and emotional needs, making adjustments to suit the present moment.

There’s always a trade-off, though. Losing speed feels like losing life force — the thrill of not knowing what’s around the corner. Its impact is more insidious than giving up a job title. It catches you from the inside out. 

I can handle my body failing me, but my mind has always been a reliable narrator. Until now. 

I remember calling my sister Margaret. I was tired and feeling down. “Oh, Ams, I’m so sorry to hear that,” she’d always say at times like these, knowing I would get to the bottom of it, whatever it was. This time was different. 

“Mags, I’m slower,” I choked. “Everything is slower.” I started to cry. “I can’t remember words. I find it hard to process information; I’m not quick like I used to be.” 

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“Oh, Ams...” Margaret hesitates. Her register quietens. The rest of the sentence hangs like a question mark. This is the beginning of the bottom.

One day, I will likely progress to stage two of the disease. The speed at which it arrives is debatable. Science says Parkinson’s moves slowly because I am young. I say Parkinson’s never met me when I was young. Otherwise, it would crack on. 

None of us has enough time, however measured. That is the metric.

• Annmarie O’Connor’s memoir Twitch: My life with Parkinson’s is available now
• Annmarie’s five-week series on living with Parkinson’s continues next Saturday