Young-Onset Parkinson's: More Than An Old Person's Disease
The young boy with the scooter was moving at 30, no, 35 km/h. I could feel myself tensing up. We were about to collide. “Careful!” My mother pulled me towards her and out of harm’s way in the nick of time. The young boy with the scooter whizzed past.
“Are you okay? “ My mother asked, her brows furrowing. I nodded. Beads of perspiration had formed on my forehead. She took out her handkerchief and dabbed them away. A few years ago, I would have felt embarrassed at being “babied” publicly. But I have learned to let her be a mother.
We were waiting in line for a taxi at Tan Tock Seng hospital after a routine consultation with my neurologist. The queue was short but it moved slowly. When it was our turn, a bright yellow cab pulled up. The driver and a passenger got out simultaneously, both making a beeline for the car boot. The two men carried a wheelchair out easily but struggled with assembly.
How others perceive Parkinson's
Meanwhile, another passenger had opened the car door but seemed to have trouble getting out. “They need help.” I told my mother. She nodded. But she didn’t budge. “I’ll be okay.” I tilted my body to show her that I was holding on to the railing. Only then did she release my arm to go to the aid of the passenger who was stuck.
A man with a walking stick who looked like he was in his 60s took a step towards me and said approvingly: “That’s a real nice thing that your sister did there.” I replied with a quizzical look: “She’s my mother.“ The man looked impressed: “She looks so young.”
Then his tone changed: “So young lady, your mother is helping. What are you doing just standing here?” I opened my mouth to answer but my mother waved me over. So I smiled and excused myself instead. I took my first few steps gingerly, holding on to the railing, and then shuffled my way over to the taxi.
Once I have made myself comfortable in the car, I turned around to say goodbye to the man, who looked chastened. He said: “Take care, young lady.“ I gave him a small smile. My mother asked: “Who is he? What does he want?” I explained that he was a busybody who had mistaken her to be my older sister. Nonplussed, my mother said: “Of course he did.”
Diagnosis and loss of independence
I was diagnosed with Parkinson’s disease (PD) in 2016. PD is a brain disorder that affects movement. The most common symptom is tremor. Often, it goes hand-in-hand with other symptoms such as stiffness, slowness of movement, and/or difficulty in maintaining balance. All four are present in my case, with far-reaching consequences.
For example, the threat of seriously injuring myself by falling became very real. I now tend to avoid crowded places. I am already a menace to myself when nobody is around — I trip, I lose balance, I knock into things, etc. Add other people to the mix and the threat increases exponentially because I’m not fast enough to respond to say, a young boy on a scooter, headed my way.
My mother is my primary caregiver, and she worries about my safety and well-being perhaps even more than I do. When we are out together, she is attentive, vigilant, and in general, behaves like a soldier determined to carry out a singular mission — that no harm shall come to her child. I deeply appreciate it.
But at the same time, the desire to be independent, to know that I am capable of taking care of myself, also come from a very real place. As the disease progresses, and I begin to lose even more control of my mobility, that desire becomes a need. It is now a source of tension between my mother and me.
The impact of young-onset Parkinson's
Making things worse is the lonely journey of being afflicted with an “old person’s disease” as a young person. Most people who develop PD start to show signs at age 60. Anything younger than 50 is considered young-onset Parkinson’s disease.1
I’m an outlier. According to Johns Hopkins’ website, current studies estimate that only about 2 percent of 1 million people with PD were younger than 40 at the age of diagnosis.1
I was at the prime of my life when I was 30. I had never felt healthier or fitter; I was doing well at work, producing amazing documentaries; I was going to be engaged and start a family. Then at age 31, I found out I have PD. And nothing was quite the same after that.
Do you find music to be an important factor in your life with PD?