Three things I’ve learned since my Parkinson’s diagnosis

Parkinson’s is like your college flatmate’s friend who, one day, takes up residence on your sofa. You don’t know much about him, except that he is fond of pharmaceuticals, keeps you awake at night playing video games, and has no intention of leaving. 

You wonder how this freeloader suddenly became part of your life and berate yourself for not spotting the red flags sooner. After some necessary reflection and self-compassion, you now have a choice: either call out the bad behaviour or learn how to co-exist.

Why not do both? I thought to myself when I first agreed to share my Parkinson’s diagnosis with the Irish Examiner. That was three years ago. I had been grieving a future I never met and an old life I would never again live. 

Coming out of the medical closet was my way of exposing a disease that affects approximately 18,000 people in Ireland. It was also my way of throwing down the proverbial gauntlet and showing that it is possible to live well with Parkinson’s, despite its challenges.

Annmarie O’Connor: I’m among the 10% of the Parkinson’s population who’ve been diagnosed under the age of 50. Picture: Miki Barlok

For those who are unfamiliar with Parkinson’s (or PD, for short), it is a chronic and progressive brain disorder caused by declining levels of a chemical messenger called dopamine. Dopamine is often associated with the reward centre of the brain (think, scrolling on social media, falling in love) but it is also responsible for critical functions including movement, mental health, and cognition. 

In fact, there are over 40 symptoms (motor and non-motor) of which no two people have the same combination. Currently, there is no cure.

Being early onset, I’m among the 10% of the Parkinson’s population who’ve been diagnosed under the age of 50. The upshot? This uninvited houseguest now has a longer opportunity to claim adverse possession of my body and mind.

It’s a constant guessing game as to when the proverbial rug may be pulled from under me. That’s why I’ve committed to using my voice, platform and privilege to tell my story. So that others may feel less lost or more inclined to share their experience. 

I may not have all the answers, but I have lived the lessons. Here’s what living with Parkinson’s has taught me.

THE VALUE OF COMMUNITY

Annmarie O’Connor: I may not have all the answers, but I have lived the lessons. Picture: Miki Barlok

As a single freelancer, I am hard-wired to be self-sufficient. With that, my biggest challenge was learning to rely on others. With hindsight, I would reframe it as valuing community. After all, we need connection as much as we need dopamine, whether it’s a close friend who helps you process your feelings, practical advice from a Parkinson’s nurse, or the power of support groups. 

I also came to realise that the illness space isn’t set up for people like me, who live alone, especially when undergoing a procedure that requires you to be signed out by a ‘responsible adult’. Add in the fact that I never learned to drive (you can read about that in my memoir Twitch), and I humbly began to call my so-called independence into question. 

I didn’t want to need people; to recruit others into this new schedule of outpatient appointments and a life ruled by minutes and milligrams. Once I leaned into the initial discomfort of letting others help, everything changed.

I started to see myself as part of a collective instead of believing that I could figure it out by myself. In fact, the more I learn about Parkinson’s, the more I appreciate how much stronger we are together, especially when times are tough.

VULNERABILITY IS POWER

Annmarie O’Connor: Choosing visibility and sharing my lived experience of Parkinson’s is how I reclaim my power. Picture: Miki Barlok

Hiding is exhausting. It requires constant vigilance at the expense of the present moment: concealing my tremor, avoiding social situations, self-sequestering after nights of insomnia. It takes its toll. So did the early days of keeping my diagnosis quiet. I soon wanted the freedom of being seen, shaky and all.

That meant learning to embrace vulnerability – radical self-acceptance, if you will. With my job security challenged, along with my sense of self and future plans, my options were clear. I could continue being stoic, or I could go public, show my soft underbelly and, in doing so, give others permission to do the same. 

Vulnerability is the connective tissue that binds the human experience together, regardless of our life paths. Choosing visibility and sharing my lived experience of Parkinson’s through podcasting, writing, social media and charity work is how I reclaim my power. 

Learning that so many people have been living for years with this disease, too scared to disclose their diagnoses at work or to family, makes me even more committed to living my truth. No one should have to hide.

SURRENDER THE STRUGGLE

Annmarie O’Connor: I feared letting go of a life I worked so hard to create. Picture: Miki Barlok

Despite being so public with my diagnosis, I feared the future. I feared what was not in my power. I feared letting go of a life I worked so hard to create. Admittedly, it wasn’t that of Anna Wintour, but it was mine and it was slipping through my fingers. And so, I gave up; gave up trying to be the old me; gave up how I moved through the world.

I gave up the struggle. Accepting that nothing would be the same meant that I could surrender completely, let go of my expectations and start again, the same life but different.

Now, I don’t hang on to the idea of what my reality should look like. I acknowledge what is and live each day as best I can.

This involves constantly reassessing my physical and emotional needs, making adjustments to suit the present moment. I’m no expert, but this much I know: when something falls apart — whether a relationship, career or health matter, all rubble looks the same. It’s our humanity that connects us and our stories that help us heal. With that, I hope my path will guide, comfort, or give you a much-needed laugh as you navigate your own, wherever it might take you.

Twitch: My life with Parkinson’s, published by Eriu, is out Thursday, September 11