Editor’s Note: Annmarie O’Connor is a fashion editor, bestselling author and well-known media contributor. In 2021, at the age of 48, she was diagnosed with early-onset Parkinson’s disease. She now uses her platform to spread awareness and bring about positive social change. Originally from New York, she now lives in Ireland. Her memoir Twitch: My Life with Parkinson’s will be published in September 2025 by Eriu.
“I have early-onset Parkinson’s disease.
It’s easier to say it straight.
Although my tremor and other telltale signs aren’t always noticeable, I’ve acquired the habit of getting ahead of it, largely to avoid people thinking I’m hungover, nervous or worse, possessed by a malevolent entity. This gives me a semblance of agency while I navigate once-simple tasks like texting, typing, walking, and trying to stay still.”
So begins my medical coming-out story: a feature I wrote for the Irish Examiner newspaper, eight months after a diagnosis of early-onset Parkinson’s. By the way, my name is Annmarie O’Connor. I’m an author, journalist and fashion editor. I also worked as a stylist for 13 years but quit due to Parkinson’s-related complications. Pinning clothes on a model while trying to calm my twitching and shaking is an occupational hazard that insurance doesn’t cover. Bouts of fatigue and involuntary shoulder movements come a close second. Humor, for the record, is a proven tonic and available without a prescription.
Looking back on this article, I can say that Parkinson’s has changed my world in ways I never imagined. Although I live in the same city, work in the same industry and have the same friends, time goes slower and with less hustle and even less spontaneity. Plans are time-bound. Life is measured in minutes and milligrams.
“Some days are good, some are bad. Most have mixed moments. There’s not a lot I can do about this.”
Or so I thought. At the time of publication, I was having my medication tweaked, figuring out what life looks like and grieving a future I hadn’t met. After sharing my experience so publicly, I soon understood the power of my voice, platform and privilege: a responsibility I now use to help amplify the voices of others.
Parkinson’s may not define me, but it is part of my narrative. Each time we share our stories, they become part of an anthology that facilitates change and serves the collective. They help us get ahead of it, if only for a moment.
In my podcast series, Living Your Best Life, I highlight personal stories from some of the 18,000 people with Parkinson’s in Ireland, their careers and families. More of a TikTok fan? Come join my growing community at @awalkintheparkinsons which shares light-hearted, educational content. My memoir Twitch will also be published this September.
I never saw myself as an advocate, but I never saw myself dealing with an incurable brain disorder that affects my movement, mood and means of making a living. Still, I consider myself lucky. With my symptoms now well-managed, I’m feeling the best I’ve felt since before my diagnosis. I have a present and what feels like a future tense, none of which I take for granted.
Looking back, the newly diagnosed me had the measure of Parkinson’s from the jump.
“It does not give you a timeline; just a constant guessing game that consumes your mental real estate if you allow it.”
I can sense a lot of fear in those words and some unexpected wisdom, too. Getting ahead of it isn’t about outrunning the disease. It’s for the one person every six minutes who receives a Parkinson’s diagnosis; the one person who needs reassurance, to know there’s life in the here and now. And there is. Don’t go it alone. We are all better together.
Editor’s Note: Life with Parkinson’s disease (PD) comes with a vast range of emotions, wherever you are in your disease journey. In a recent special edition podcast from The Michael J. Fox Foundation, a panel of experts have a frank and deep conversation about how they’ve navigated their feelings over the years, how they’ve managed challenging emotions and what lifts them up and gives them hope.
The Parkinson’s journey can feel isolating at times, both for those living with PD and their loved ones. Access the Parkinson’s Buddy Network, an online community of people impacted by Parkinson’s, that was designed to help individuals and families make meaningful connections, engage in important dialogue, find useful resources and build long-lasting relationships.