A SUDDEN DETERIORATION(2019)
Every Saturday, I’d go jogging in the park near my Yishun home. On my way home one morning, I tripped as I stepped out of the lift.
There was a lingering, stinging sensation along my jawline from the impact, so I quickly ran my tongue over my teeth to make sure they were all intact. They were.
I realised I couldn’t move when I tried to get up. My legs felt like they were made of lead and wouldn’t move an inch.
Even though it was only about 3m away, getting home seemed like a Herculean task.
I rang my younger brother, who was the only one home, but no one answered. Panic surging, I quickly checked the top-right corner of my phone. Only five per cent of the battery is left.
The “freezing” episode at the lift lobby was just the first of many.
It was the beginning of a sudden deterioration, which proved to be life-changing. I knew the gig was up when I started collapsing everywhere — in the shopping centre, at the train station, in the office and during documentary shoots.
One of the main disadvantages of long-term levodopa use is the decline in efficacy, which means that the same amount of medication produces a shorter duration of motor control over time.
When the medication is wearing off, patients experience a worsening of PD symptoms. The fluctuation of the states in between medication doses is known as the on and off phenomenon.
My younger brother was my knight in shining armour that day, carrying me home on his back. But expecting him, or anyone else, to come to my aid every time would have been unreasonable.
The logical next step was to make my condition known.
NAVIGATING PARKINSON’S (2019-present)
Telling my then-employer that I could no longer contribute in the way that they expect someone holding my position to was a matter of professionalism.
I thank all my bosses who fought to keep me in their team, and I believe that my then-employer was sincere in keeping me but I didn’t want to be seen as a “charity case”.
But I would never not have been a charity case unless they changed the metrics for evaluation of job performance for me. So I resigned in 2020.
It was harder to break the news to my family and friends, because I care. I had kept the diagnosis from everyone including my family.
I wanted to be sure before I triggered an overreaction from my parents, especially my mother, who had been sharing caregiving duties with my aunt for my grandmother.
My mom had witnessed her own mother wither before her eyes. I didn’t want to be the one telling her that her child is now afflicted with the same disease, unless I was sure.
I had to be the calm and rational one as I reminded them that a diagnosis like PD is not the end of the world, as it is actually one of the most manageable neurological disorders.
I also tried to lighten the mood by pointing out that the rate at which the disease progresses can vary from person to person, and that at a slow enough rate, it can be seen as simply a part of the ageing process.
Some of my friends bought my bravado, and they would ask me for my secrets in staying strong and positive.
I won’t lie. The dejection that I felt when I couldn’t move — it hurts as much as any physical injury I’ve ever had.
But over time, I’ve learnt the value of seeing myself as part of a team, and that there’s no shame in relying on my family, my friends and other kind souls.
It is also important to know that I didn’t suffer in vain. Today, I hope sharing my story can help to raise awareness about a disease that may not be well understood by the public.
I hope that helping people to look at it from a different perspective will foster empathy rather than sympathy towards those living with PD.
I’m sharing my story because I think what I have to share is valuable, and I can tell my own story well.
In 2023, my goal is the same as last year’s and the year before — to have the strength and courage to get up and keep going, no matter the challenges.
The world can be a tough place. Sometimes, it will throw a curveball from the most unexpected of places. But in the game of life, it’s not about how hard you can throw a punch but how much you can take a hit and keep going.
If you keep getting up, no matter how many times you’re knocked down, you become stronger. You become resilient. That’s how you win.
ABOUT THE AUTHOR:
Elrica Tanu was a television producer with over 10 years’ experience in the media industry when she was diagnosed with Parkinson’s disease at age 31. She is now recovering from a recent brain surgery and spends her time chronicling her journey on her blog.