My Parkinson’s Journey by the Former Deputy Prime Minister

PD is more common in men than in women, and more commonly, symptoms begin at age 60 and older. It’s progressive, but it doesn’t die on its own. The most common cause of death is a catastrophic fall or pneumonia injury caused by swallowing problems, leading to aspiration of fluid into the lungs.

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Lack of knowledge about PD often increases the stigma, misunderstanding, and fear associated with the condition.

The first symptom I noticed was a small movement of the ring finger of my left hand when stressed. I rejected it. But within a few years, it became a full-blown tremor and impossible to hide. At that time, fatigue was another major symptom. The bones were deep and could not be treated by taking a nap in the afternoon.

Then there was an uncontrollable movement, dyskinesia. I can no longer walk straight. And through all that, it’s always wired, switched on, all sensations are received, and the sensation of being at the edge. A few years later, I realized that my first symptom was really an episode of depression. That was the main reason for resigning from Congress in 2008.

Up to 40% of PD patients tolerate depression as the first symptom, but are unaware that it is due to PD. And if you have no other symptoms, why do you do so? After the diagnosis, I was prescribed a dopamine alternative and my doctor suggested that it would work for five years, but it will get tougher for the next five years. In 2018 he gave hope to what was initially a horrifying cure. In deep brain stimulation, two electrodes were placed deep in the brain and connected to a battery so that a constant current mimics the production of dopamine. It worked particularly well to mitigate aspects of disability movement.

However, PD is still a chronic degenerative disease and continues to cheerfully follow the chosen path, dragging me behind it. In the last few months, I have found a greater impact on my psychological and mental health, my speech and cognitive ability. It leads to lack of self-confidence, depression, uncertainty and severe loss of self-confidence. I don’t know how much it afflicts me like this before moving on to other things.

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I don’t know how people who live alone or who live without the support of their loved ones will do. If so, it’s thanks to the kindness and professionalism of caring therapists and clinicians. They allow me to stay involved in life, still play a role, and not give in to the darkness.

The challenge of PD has changed my life like no other. I didn’t expect it and I know I’m not dealing with it well.

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I, you, and all of us cannot escape the inevitability of life-changing challenges that have been rolling towards us for years. They make us and often break us. Parkinson’s disease did it for me. I’ve been hoping for years that it stirs up stoic determination, the ability to withstand tension, and the ability to move forward despite its weight. Rather, it made me feel disappointed and desperate.

PD turned me over. I wasn’t ready for the shock.

John Watkins was Deputy Prime Minister of Labor in New South Wales from 2005 to 2008. He is a member of the New South Wales Board of Directors for Parkinson’s disease.

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