Soania Mathur Talks About How Parkinson Disease Affected Her Life

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Parkinson’s disease ranks among the most common late-life neurodegenerative diseases, affecting approximately 1.5% to 2.0% of the population older than age 60 years, which translates into more than 5 million people globally. Young onset Parkinson’s (before age 40) occurs in 5-10% of people diagnosed. Twenty percent are under the age of 50.

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It is a progressive illness whose hallmark symptoms include resting tremor, rigidity or stiffness, bradykinesia (slowness of movement) and postural instability making the person prone to falls. These are the most common motor symptoms of Parkinson’s Disease but there are a whole host of non-motor symptoms such as anxiety, depression, sleep disorders, constipation, pain, incontinence and many more.

My symptoms started with a slight tremor in my right pinkie finger. Curious, I thought. As a doctor at the start of my medical career, I had heard patients describe a tremor before but to actually experience it was medically intriguing to me. Soon after I was expecting my first child when I noticed that the slight intermittent movement in my finger became more constant and concerning. So much so that I decided to see a neurologist colleague and within a few months what I had initially thought was a benign annoyance evolved into a diagnosis of a progressive, incurable neurological disease – Young Onset Parkinson’s Disease at the age of 27.

And so the diagnosis was made, and the impact of this disease became more and more significant. As the tremor worsened in my right hand, then my right foot, and ultimately progressing to the left side of my body, I immersed myself in work and our growing family that eventually included three beautiful daughters. It was easy for a short time to distract myself with the joys of motherhood – children and their innocence and joyful attitude are therapeutic in their own right. But despite the “happy face” I needed to put on for them, beneath the surface I was in a constant state of emotional turmoil. For a long time, I focused on the difficulties I faced on a daily basis and all that I felt I was giving up. Primarily because it was not my choice to slow down, I was not given the option.

This progressive neurological disease that was taking over my body, stiffening it in the morning, cramping my feet to the point it was difficult to walk, amplifying my tremor, causing significant upper back and neck pain and turning my nights into restless exhaustion. There was no escaping it. Eventually I had to give up assisting in the operating room, and suturing in our urgent care. I hated the fact that I had to time my medications so that my hands would not be shaking when I gave immunizations or did physical exams. It infuriated me that the tremor would give me an air of nervousness. And it was extremely difficult to try and do what was best for my patients, to help them through their medical issues while trying to hide and manage my own symptoms. And it followed me into all aspects of my life – from caring for my young children to taking care of my home to my relationships with friends and family.

Eventually I had to shift my focus from disability to those aspects of life that I did have control over. I began to understand that for the moment my future included Parkinson’s Disease but my life experience really depended on how I faced the challenges this illness brings – a true paradigm shift.

Now 15 years later this disease continues to progress and my symptoms worsen. I had to give up clinical practice but through active management of my disease and extreme self-care, I’ve been able to remain engaged and maintain my quality of life. And I remain optimistic about the future. Looking at the state of medical research, I am confident there will be a cure but when that will be is a more difficult question.

Although people with Parkinson’s share some common symptoms, each person seems to get their own “version” of the disease when considering age of onset, symptoms, response to treatment, progression etc. This makes treating patients rather difficult as it is highly individualized and there is a fine balance between treating symptoms and side effects from medication, which can sometimes be equally, or more debilitating.

Parkinson’s Disease is thought to be due to a loss of cells in various parts of the brain particularly in an area called the substantia nigra. The cells in this region produce a chemical messenger called dopamine, which helps coordinate movement. But the variability of the disease and its symptoms, indicate that Parkinson’s Disease is much more complicated than a loss of dopamine alone.

Research is now focused on addressing the complexity of this disease – what exactly is causing it and what can be done to prevent it from developing, slow down or even reverse the disease. There are ongoing studies developing different delivery methods for medication such as inhaled forms that may act quicker. Gene therapy is also being explored as are a variety of drugs aimed at a number of different parts of the brain to help control symptoms and side effects. All efforts aimed at improving quality of life for patients as research continues to work towards finding that elusive cure.