Annmarie O’Connor Opens Up About Parkinson’s, Advocacy, and Her Upcoming Memoir Twitch

Parkinson’s Ireland sat down with author, journalist, and advocate Annmarie O’Connor to talk about her upcoming memoir Twitch. Annmarie has worked closely with Parkinson’s Ireland over the years and has been a tireless advocate for people living with Parkinson’s disease in Ireland. In this candid conversation, she opens up about her diagnosis, the writing process, and what she hopes readers will take away from her story.

What inspired you to write Twitch, and at what point in your journey did you feel ready to share your story publicly?
I was inspired because I wanted to own my story and change the narrative — from something that happened to me into something I could share for others. Memoirs are an invitation for people to see themselves in you. It’s never just about one person’s life.

I never expected to get Parkinson’s, but I knew staying quiet would serve no purpose. I have a voice, a privilege, and a platform. I first felt ready to share when the Irish Examiner asked me to write about my story. I’d been fashion editor since 2008, and before that I had “soft launched” my diagnosis to a few people. On Parkinson’s Awareness Week, I shared some information about Parkinson’s publicly on my social media, but looking back, I think it was too soon.

My features director, Vicki, encouraged me to write about my experience and gave me complete freedom to veto the piece right up until the last minute. I was only eight months diagnosed when I wrote the article, and it was published in August 2022. Writing it was a powerful way to process what had happened and make sense of it. That moment became the beginning of my advocacy. I didn’t anticipate the impact my voice would have — the landslide of support took my breath away.

I received messages from men, women, and carers sharing their own experiences. I realized that many people hide their diagnoses out of fear, and how fortunate I was to have supportive family, friends, and a supportive job. Not everyone has that. For many, it’s a lonely place. That realization emboldened me to use my voice and the freedom I have to create visibility for people with Parkinson’s.

Could you share what those first weeks and months after your diagnosis in 2021 were like?
My mum has always said I’m stoic, that I just kind of get on with things. My sister, Margaret, said I was not being stoic about my diagnosis, I was in shock. When I was diagnosed, I had a very sketchy idea of what Parkinson’s actually was. 

When I was told I had Parkinson’s, I had only a sketchy idea of what it really was. I knew of Michael J. Fox, and my accountant told me that Muhammad Ali had it too. But I treated it like I was finding out about another woman named Annmarie—as if I had been cloned and she was the one receiving the news.

I did all the things you’re supposed to do: spoke to the right people, took my medication properly. My aunt put me in touch with a friend involved in a Parkinson’s chapter, and she told me about hydration, exercise, and medication. But I wasn’t really accepting it was happening to me. When I looked up Parkinson’s, all I saw were images of elderly people. I thought, “three tablets a day and I’ll be fine.” I tried to live my old life — but I couldn’t.

Parkinson’s makes your life very measured. You have to take medication on time, go to bed on time. I was too “loosey goosey.” Sometimes you need to be chased by Parkinson’s to realise you can’t stay out until 2am anymore. I don’t like saying “Parkinson’s taught me a lot” — but it did. It calls the shots, and you have to meet it halfway.

The first time I cried was after watching a TikTok video that said, “We treat the symptoms, not the disease. It’s degenerative and incurable.” That was my “come to Jesus” moment. After that, I became ‘the good student’ — timing my meals, medication, everything. It was a steep learning curve.

I would also like to say a huge thank you to Parkinson’s Ireland. By July 2021, I was struggling with symptoms, and my consultant was on holiday. My friend Andy told me to call Parkinson’s Ireland. I spoke to Lisa, who explained simple things — like not taking meds with breakfast, not swallowing them dry, and how important water is. I’d been told all this before, but nothing had really sunk in until that conversation. She reassured me it’s normal — it’s so much to take on. That emotional whiplash is real.

It took me a couple of false starts to accept this was my life now. Your mind has to catch up with your body. Sometimes you need a good cry or scream before you can give yourself grace. Parkinson’s is chaotic and completely out of left field. There’s no “right way” to do it.

What are the biggest misconceptions you encounter about Parkinson’s? Did you have any yourself?
Before my diagnosis, I knew very little. I thought of it as something old men had, and I only associated it with tremors. I didn’t know about the non-motor symptoms, or how it impacts women, especially with early onset and how it can impact your hormones. That’s something I learned through Richelle Flanagan.

Parkinson’s is a shapeshifter. You start with one symptom profile, but it changes over time. Nothing stays the same. For me, fatigue has become a huge factor. I go to bed at 9pm, and in the mornings I feel almost unwell until I take my meds. As they build up in my system, I come to life again, and I usually feel better by the evening.

Writing a memoir about something so personal and painful can’t have been easy — what was the most challenging part to put on the page?
For me, it was talking about unhealed eating patterns from my twenties.

In the early months after my diagnosis, I was trying different medications. Those of us who are tremor-dominant often find Sinemet doesn’t help much, so I experimented with different combinations. Thirteen months in, I agreed to try the dopamine agonist patch. It worked wonders for my tremor — they became almost non-existent. But the patch also reduced my appetite, and that triggered old, unresolved patterns around food.

I want to be clear: this had nothing to do with compulsions, which are sometimes linked to dopamine agonists. This was about my own history with eating patterns, something separate that resurfaced unexpectedly.

I lost weight, and when a friend pointed it out, part of me liked it — which upset me. It made me realize I hadn’t fully healed from those struggles. Writing about it was difficult because I thought I’d “moved on,” but it forced me to acknowledge that healing is never really linear.

Eventually, I reframed it. That younger version of me was still present, but now I had more wisdom and tools to manage it. It was a blip, and with support from my circle, I got through it. In hindsight, I wish I’d started the patch sooner.

The book has been described as “frank and funny.” How did humour become part of your coping and writing process?
I come from a funny family. We’ve had a lot of tragedy, but humour has always been our coping mechanism. My dad’s side, in particular, are hilarious. I’ve heard it said that dark humour is a result of tragedy. I lost my dad when I was young, and I talk about experiencing grief more in the book. 

Comedy has always been a way for me to tell the truth, to laugh at myself. Sometimes it’s not even a coping mechanism, it’s survival. When it comes to anything that happens to me I will be the first person to joke about it. If you don’t make fun of yourself, someone else will. Life is too short.

For me, humour takes some of the power away from Parkinson’s. It’s a weapon.

What role has community — friends, family, or Parkinson’s Ireland — played in your journey?
I’m incredibly lucky. My family and friends would do anything for me. Parkinson’s has shown me exactly who has my back. My sister Margaret once had a pair of Penneys PJs in the boot of her car, ready to rush to Cork if I needed her. Again, I hate to say that Parkinson’s has taught me things, but Parkinson’s made me realise how lucky I am.

Parkinson’s Ireland has also been huge. Their website, Lisa’s weekly nurse Zooms — I devoured everything. It felt like I’d suddenly been handed a scholarship to “Parkinson’s College.” 

Lisa made the information so palatable. I think that a lot of Parkinson’s information is so scientific and there can be a disconnect between the people living with Parkinson’s who don’t have a science background and need someone to break it down. I think that is crucial and Parkinson’s Ireland deserve a round of applause for that.

I’ve also taken part in events like “Walk in the Park,” surrounded by friends, family, and fellow patients. The camaraderie was amazing. The Parkinson’s community is resilient, supportive, and committed — and I’m proud to be part of it.

What message do you hope readers, particularly those living with Parkinson’s or chronic illness, will take from Twitch?
I want people facing uncertainty, or whose sense of self has been shaken, to know they don’t have to be defined by their struggle. You will always be you. Parkinson’s can’t take that away.

At the end of the book, I say: “All rubble looks the same.” What matters is our humanity, and how we see ourselves reflected in each other. I hope my journey acts as a mirror, so readers feel seen and heard.

Finally, if you could go back and speak to yourself on the day you received your diagnosis, what would you say?

I would say go easy on yourself. It’s going to be a long journey. It’s not going to be easy. You will find strength you never knew you had. Rely on others. People are waiting to help. I was being too stoic and you have to be vulnerable. There is strength in vulnerability — the more you show your soft underbelly, the more you’ll realise how people want to help and you’ll realise you have a huge community.

I have people on socials tell me they live in a remote place and they’re living with Parkinson’s, particularly in America. I put them in contact with the Michael J. Fox Foundation. They say they feel lonely and I say: find your local chapter — you will find community. Nothing compares to the relief of finding someone who understands and can laugh at the same “inside jokes” only Parkinson’s people know. Find your community. They’re out there.

Twitch will be published on September 11th, 2025 and is available to pre-order now: Easons – Twitch by Annmarie O’Connor.