Patient’s Perspective - The Will to Live a Good Life

By Sharon Chakkalackal

This is my journey of how I came to be diagnosed with Young Onset Parkinson’s Disorder (YOPD) symptoms at the age of 38.

When I think about the factors leading up to a diagnosis of YOPD, there was a lot going on in my life at that moment. A stressful work environment exacerbated by COVID-19 uncertainty, social isolation, amplified sedentary lifestyle, processing emotional pain from the past and transitioning into a life of partnership (cohabitation, planning a wedding, marriage). In addition, I also have a predilection to bipolar episodes, and difficulty with balancing my emotions and moods during stressful circumstances. A perfect storm for a nervous system override, one might say. It was as if feelings of chaos, overwhelm and confusion in my life were mirrored in my body. Mental exhaustion, defensive emotional responses (anger, sadness, despair, helplessness) were prevalent. 

What I didn’t know then and what I’ve come to know now, is that YOPD is a whole nervous system affair impacting the entire body and its functions. 

Body Signs

My then fiancé, and now husband, noticed the lack of shoulder movement in a video while we were skating, which further prompted me to look into the matter. In the winter of 2020, I started to notice that my right shoulder was moving slower than usual. The limited range of motion in the right shoulder and limited ability to move my right arm became more and more apparent (in comparison to the left arm). 

At first, we thought this was a working from home issue. An ergonomic issue brought on by the excess number of isolated sedentary hours sitting at desk, typing and mousing as a result of the COVID-19 pandemic. As 2021 got underway, I started to notice other right-sided slowness, stiffness, and rigidity, while also experiencing excess energy in the form of tremors. I felt as if two different energies were running alongside each other within my body. Unsettling and scary. 

My wrist and fingers would get stiff, cramp, and at times tremor, making it difficult to type and produce work documents. Then, my sleep was severely disrupted; night hours were accompanied with stiffening and cramping of the right hip and leg followed by trembling of the big toe in the same foot. Naturally this was accompanied by a lot of anxiety. That winter, there were many hours of trying to breathe through the unrecognizable energy. What was this uncomfortable energy running through my body? Deep emotional turmoil, tears, and fear took over as unexplainable things happening in my body! What if this was the end of me?! 

I became hyper-aware of every sensation in my body and obsessed with wondering what it could mean. The silver lining was that I became very self-aware and attuned to my body and its needs. Summer, fall, and winter were met with increasingly strange sensations on the right side of my body. It became hard to write with my dominant right hand. Lifting my right arm was difficult, impacting daily activities such as showering, washing/combing my hair, brushing my teeth, applying cream, using utensils to pick up/cut food, multi-tasking, and cooking. Some days I was more sensitive to lights and sounds. What was happening in my body? I’m a healthy person (exercise regularly, eat nutritious organic food, sleep 7+ hours a night)... Why me?

Medical Journey: Rushing to Wait

Meanwhile as my body was talking to me, I was in regular touch with my family doctor. She initially believed that many of my symptoms were due to sedentary overworking and being mentally stressed. Perhaps these signs from the body would go away with time. Something didn’t feel quite right with her suggestion, I felt dismissed while my intuition told me otherwise, so I kept pressing her further. My physiotherapist seemed to think there might be a neurological connection and wrote a letter of concern to my GP. After that letter combined with a very tearful phone call (still during pandemic) with the family doctor, she relented and ordered a series of biological tests: hip MRI, X-rays (shoulder, hip, foot), extensive blood tests, referral to an orthopedic doctor, referral to a neurologist, and later referred me for a brain MRI. To my surprise, all the tests came back in the healthy range.

Luckily, I’m fortunate to have 2 doctors in my immediate family - my mom and my sister. Both of them helped immensely with reassuring anxious thoughts and interpreting the test results while I waited for radiologists to interpret MRIs and my family doctor to get back to me regarding the X-rays and blood test. Waiting was the hardest part in many ways. Did I have a labral hip tear? Did I have a brain tumor? Was this rheumatoid arthritis?

Typing was becoming increasingly difficult. Sitting too. A train of energy running down my right leg and foot. I stopped working in November 2021 for six months.

In January 2022 the first neurologist said that It would be good to get a referral to the Toronto Western Hospital Movement Disorders Clinic – a world renowned clinic in neurology. He sheepishly confided his diagnosis was that my symptoms looked like Parkinson’s. After waiting nearly 2 years for some clarity, this was not the answer I was looking for! I now was faced with the daunting task of understanding a complex brain condition that left me with more questions than answers. In March 2022, with the continual lack of sleep and rollercoaster of emotions, I voluntarily hospitalized myself and was diagnosed having a bipolar episode. I was in the psychiatric intensive care unit for about a month. At the end of March, I saw my current, and second, neurologist at Toronto Western Hospital. Based on how my body responded to her motor- and non-motor-assessments she also diagnosed me as experiencing Young Onset Parkinson’s symptoms.

Owning it by Creating a Life I Love

Throughout this whole journey, many have asked me, and I also ponder daily, on what gets me through it all and what gets me out of bed each day.

Perhaps it’s not one thing, but a series of things. Primarily, the desire to live. No one can make you want to live another day, to create a life you love. I’ve learned it has to come from within yourself. For me it is the desire to live a quality of life, as I define it. What does it mean to be successful living in my body as a 40 year-old woman? How do other patients manage their energy and daily activities? For me, at the moment that doesn’t include sedentary computer work. I’ve learned that awareness while coupled with action is what it takes to get my body moving and grooving!

So my daily rituals include (1) body movement (learn how to make exercise fun! I engage weekly in a variety of activities such as dance, cardio, cycling, walking in nature, strength training, stretches, skating, badminton, ping pong, swimming etc.), (2) nutritious eating (3 meals a day), (3) sleep (at times out of my control) and daily moments of rest, (4) daily social interactions and (5) intentionally embarking on the very hard work of understanding, managing and communicating my feelings/needs/wants to family, husband, friends and coworkers. The fifth item is by far the hardest, as it requires a willingness to see how I have a particular stress response that involves thoughts, feelings and body sensations and the courage to move through them; (6) community involvement (not hiding away) and cultivating meaningful relationships e.g. support groups, gym classes, friend networks, family relationships, volunteering, choir, paid and unpaid supports. 

Creating your Quality of Life


Creating your Quality of Life

Throughout these daily rhythms I started seeing myself as a human being having a human experience on earth, as opposed to a patient confined to the projected expectations of a degenerative neurological diagnosis, with an innate need to be witnessed (seen, heard, understood) by other humans. A nourishing process was taking place amidst the uncertainty, chaos and confusion.

Staying open, curious and experimental never hurts. What works in winter may be different than summer. Trial and error with medication (currently not on YOPD medication). Remembering that we all have animal bodies that need maintenance especially as we age. Remembering that all of us are human beings having a human experience here on earth. Some days are messy. It’s okay if it’s messy. Life is messy. The future is unknown, that is certain, and yet it’s still my future to create something beautiful and worth living for.

Last comment on by Katherine Bhana,


Submitted by Katherine Bhana, on

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