'I arrived at CUH before 9am. By 4pm, I had been diagnosed with Parkinson’s disease'

Sat, 21 Jan, 2023 - 21:21

Annmarie O’Connor

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.

If you are not familiar with the disease, neither was I. Prior to my diagnosis in December 2021, I thought Parkinson’s — with its familiar stoop, shake, and shuffle — was the remit of elderly men, not women like me in their 40s.

I knew of outliers like actor Michael J Fox and boxer Mohammed Ali, but there ended my knowledge. Eight months later, I am, admittedly, still mystified.

If knowledge is power, I’m poorly armed. I know that Parkinson’s is a progressive, degenerative brain disorder with no cure, affecting movement, balance, and speech. I know there are over 40 symptoms — both motor and non-motor related — of which no two people have the same. I know it often starts slowly and, in my case, on one side of the body.

I also know that it has changed my life in ways I never imagined. Some days are good, some are bad. Most have mixed moments. There’s not a lot I can do about this. What I can do is share my experience; get ahead of it, if only for a moment. Hopefully, it might go some way to helping someone else with theirs.

This is my story.

How it all began

I woke up one morning in September 2020 with pain in my right shoulder. I had been carrying heavy bags on a recent photoshoot during a brief lockdown respite. I didn’t remember having hurt it and was concerned about the persistent nagging, which got progressively worse in the coming months.

By November, the shoulder pain was accompanied by a fine shake in my right hand. I already had trouble putting on and taking off my bra each day, which made things interesting, to say the least. Assuming it was a trapped nerve, I promised to make an appointment with my GP once pandemic restrictions eased.

Between March and December, I had three MRIs (shoulder, neck and spine, and brain) which ruled out a trapped nerve, but still shed no light on the nature of my hand tremor which had since escalated from fine to coarse, now affecting my arm. I also experienced a slight drag and sensation of heaviness in my leg — all on my right side.

Unsatisfied with the results of my MRIs, my doctor sent me to Cork University Hospital (CUH) acute medical unit for further tests. By this time, I had acquired a couple more worrying symptoms.

Annmarie O'Connor's symptoms started with a pain in her right shoulder

My right hand started to cup, making it difficult to open a bag of coffee, brush my teeth, or apply mascara — the latter, in my opinion, should be deemed a hate crime. My handwriting became small and cramped and the shake in my arm meant my Christmas cards looked more like ransom notes. Let’s just say; I didn’t send many that year.

I arrived at CUH before 9am; saw a nurse, a doctor, a neurologist and a consultant neurologist. By 4pm, I had been diagnosed with Parkinson’s disease.

I was standing at the time and asked by the consultant if I wanted to sit, so I did. Here it gets blurry, but I do remember what would be the first of many chats about dopamine.

Typically associated with the reward centre of the brain, dopamine is a neurotransmitter that is also responsible for controlling movement and co-ordination. In Parkinson’s patients, 70% to 80% of nerve cells that produce dopamine have died by the time symptoms appear. And all this time, I thought it was simply what drove me to impulse buy and scroll too much on social media.

I returned to the CUH outpatient department a few days later to meet with my neurologist again. On his advice, I brought a friend — a second pair of ears — to catch what escaped mine. We spoke in length about dopaminergic medication options, developing technologies, and a future that looks, for the most part, brighter.

I felt relieved. At least they caught it early. I am young and healthy. My body will respond to medication. No more shoving my hands in my pockets or folding them under my arms to stem the shake. No more trying to write features while my fingers behave like wilful toddlers. No more painful foot cramps when waking in the morning or insomnia from restless legs. Within a few days of taking the tablets, my life will be manageable again — or so I thought.

The good news — and the trade offs

Medication helps, but not without meeting it halfway. Each person’s experience of Parkinson’s is different. One size does not fit all, and often tweaks are required in dosage and frequency to suit the individual. I laboured under the misapprehension that taking a few pills each day would sort things out. With any medication, there are side effects and a habituation period. The improvement in my tremor means I can write and therefore make a living.

The trade-off? Dyskinesia — sporadic involuntary movements in my left shoulder. Hence, the aforementioned demonic possession. Humour, for the record, is a proven tonic and available without a prescription.

Being intentional about lifestyle changes is also crucial to managing symptoms. Prepare to kiss spontaneity goodbye and get familiar with a life of routine, nay, military-like precision. Rigorously timed medication must be taken with a large glass of water to guarantee absorption in the gut. Not like I was doing: Taking it dry on the fly. Food should not be eaten until at least 30 minutes after a dose or one to two hours before the next, as protein can interfere with its uptake. This means I live by the clock with medication alarms on my phone and notes on my kitchen blackboard, reminding me not to graze during blackout hours.

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By extension, data is key to ironing out the kinks (no pun intended), so prepare to scrutinise each day for patterns that are particular to your Parkinson’s experience. For instance, I keep a daily symptoms journal so I can track my “off” periods (when tremors and pain kick in) and ascertain whether medication, stress, or my monthly cycle could affect it.

As a now 49-year-old woman, I have the added layer of discerning if symptoms like anxiety, fatigue, and brain fog are perimenopause or Parkinson’s or a mixture of both. A survey conducted by dietitian, Parkinson’s advocate, and co-founder of My Moves Matter, Richelle Flanagan, showed that 74% of the women reported a worsening in their symptoms the week before menstruation.

Also worth noting is the importance of daily exercise — believed to ameliorate symptoms of the disease and slow its progression. On referral to a physiotherapist who specialises in Parkinson’s, I received tailored advice about what could work for me.

Gentle activities like tai chi and yoga help with balance and co-ordination, while exercises like boxing, running or, in the case of anyone who lives in Cork — walking uphill — are encouraged for increasing heart rate and for activating my right arm which, now has a diminished swing.

In addition to hydration, diet, and exercise, I get regular acupuncture sessions, which help me with relaxation and mental clarity, especially during weeks of interrupted sleep.

Despite preparing for bed by 10pm, I seem to wake between 3am and 5am. Ironic; considering how I used to need a bouncer and an act of God to rouse me before office hours. Now I know what it must feel like to have kids.

As for the future? To me, it looks like an ellipsis. For every uplifting personal story I hear, there are others involving deep brain stimulation (a neurosurgical procedure involving the implantation of electrodes), losing the ability to speak, swallow or emote, and in later stages of the disease — relying on a caregiver. It helps to stay present if only for self-preservation.

Parkinson’s is the worst kind of thief. It slowly erodes your identity and dignity in the process. It does not give you a timeline; just a constant guessing game that consumes your mental real estate if you allow it.

My habit of getting ahead of it is a way to acknowledge its presence without making allowances for its sneaky behaviour. The day it comes for my writing ability: I will be waiting. Mark my words: There will be one hell of a fight.

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