Annmarie O'Connor: Parkinson's and me, one year on

On December 16, 2021, Annmarie O’Connor was diagnosed with early onset Parkinson’s. Here, 12 months later, she shares her learnings.

Annmarie O’Connor: One year on and I understand what it means to step into my power. One year on and I’m finding my voice.

On December 16, 2021, I was diagnosed with early-onset Parkinson’s disease. One year on, nothing is new yet virtually everything has changed. 

My medication is still being tweaked. I have trouble controlling my tremor. My legs are continuously restless. I spend most days in a sleep deficit from the previous night’s impromptu dance party. 

Getting the balance right takes time, or so I tell myself. 

Trust the process. Exhaust all options. Throw everything at it. 

Throwing everything at it, however, is an exhausting process. It’s mundane, repetitive and requires a lot of energy – something which Parkinson’s depletes at will. 

That said, I’m remarkably stubborn. Maybe it’s my West of Ireland genes or simply being the youngest in a big family. Either way, it serves me well. 

One year on and I understand what it means to step into my power. One year on and I’m finding my voice. 

Here’s how it all began. 

Last August, I wrote a feature for the Irish Examiner Weekend magazine called Parkinson’s and Me – my medical coming out story. For those who are unfamiliar with Parkinson’s disease, it is a progressive, degenerative brain disorder with no cure, affecting movement, balance and speech. 

For me, sharing my lived experience was an integral step in processing a chronic disease diagnosis. Ironically, when writing the piece, I was feeling much like my pre-Parkinson’s self. My symptoms – namely, rigidity and tremor – were managed by medication with the help of a rigid food, hydration, sleep and exercise schedule. At the time of publication, one month later, things looked a lot different.

I was experiencing regular involuntary movements (dyskinesia) in my left shoulder and an increased shake in my right hand which made computer work slow and challenging. My pinkie finger would splay from the others in a misguided Vulcan salute, adding to the stress. 

I started experiencing painful restless legs again forcing me out of the bed every morning between 2.30 and 4.30 am. On a positive note, my freezer is now stocked with enough chilli to survive the Rapture and my hot press is disturbingly neat. 

Annmarie O’Connor: If I’ve learned anything about living with Parkinson’s over the past year, it’s patience. 

That said, when awake, I could feel a limp in my right leg; sometimes I couldn’t feel it at all. All of this, plus a newly found tremor in my right foot and a redux of sporadic, painful curling (dystonia) of the toes.

My honeymoon period had ended. Despite taking the proverbial gold standard of dopaminergic medication, I was among those patients who experience a smaller window of relief from ‘on-off’ movement fluctuations. Adjuvant treatments followed to varying degrees of success, reflecting the fact that every person’s experience of Parkinson’s is different. Hence, its designer disease’ label.

Here’s the thing. When something isn’t good enough, I send it back – designer or otherwise. I don’t let it take up space in my life. 

Parkinson’s disease may not have a return policy (more like a lifetime guarantee), but I won’t allow it to call the shots. 

I’ve spent the past year trying to understand how to live well with an interloper that seeks to scupper my motivation, mood and means of making a living. I’ve had to press pause on my life, so that I may move forward. I expect more.

And there is more – so much more. Life may not happen on my timeline but the privilege of having a life to live more than makes up for it. 

With the help of my consultant neurologist, and Cork University Hospital’s first Parkinson’s specialist nurse, I am exploring new treatment options to support my current care plan.

Additional education resources, in particular, weekly Zoom clinics with the Parkinson’s Association of Ireland ( Parkinsons.ie) specialist nurse, help me understand the nature of pain, how to navigate sleep issues and the effect of adjacent physiological changes like menopause. 

Living alone, these little a-ha moments can go a long way to alleviating anxiety caused by micro-ruminations: Was that another twitch? Is it getting worse? What does it all mean?

Yes, it’s frustrating to put my body through a new course of medication. Yes, decision fatigue takes its toll. Yes, it costs time trialling a new treatment, but well spent, in my opinion, if my quality of life improves. 

That’s the beauty of the future – it holds as many possibilities as it does potholes. Besides, I asked Santa for a positive result before the new year - covering my bases and all that.

If I’ve learned anything about living with Parkinson’s over the past year, it’s patience. 

Time will slowly test its mettle as it measures out the future in milligrams. Waiting is the hard part.

Waiting for the pain to ease and the dopamine to kick in, waiting for the shaking to subside, waiting to fall back to sleep when my body insists on moving. Waiting to feel like myself again. 

Mundane tasks and habits become little pockets of resistance – mental and physical minefields that need to be traversed day in and day out. My body, always pulsing, contracting and wilfully kinetic, even at rest. My mind, still sharp but often in need of a break. 

Waiting to feel like my old self again requires time, a constantly depreciating asset. Patience, on the other hand, allows my new self to emerge – jerky and shaky but hopeful.

Make no mistake. Parkinson’s will change you – inside and out. You, however, get to decide what that looks like.