Opinion
As my ‘Parkinson’s pause’ fast forwards, I am stunned by acts of bravery
John Watkins
Former NSW deputy premierToday is World Parkinson’s Day, an opportunity to contemplate the lives of the estimated 150,000 Australians living with Parkinson’s Disease (PD) and all those involved in their care and support.
It’s a time to think of them with kindness and to plan Parkinson’s policies with justice and compassion – a chance for all of us to value and protect the two great human gifts that PD targets: our cognition and capacity for movement.
John Watkins: “Just to make sure I don’t get too comfortable and because it hates to be beaten, the PD has recently caused swallowing to be more difficult.”Credit: Janie Barrett
Because Parkinson’s disease is a condition more common with age, the number of Australians with PD is growing rapidly. It has quickly become the second-fastest growing neurological condition after Alzheimer’s disease.
Many researchers blame this pandemic on the overuse of toxic herbicides and pesticides, leading some to call it a “man-made” disease, but causes are still unclear.
Known as a movement disorder – think of tremor or difficulty walking – more recently the multi-faceted complexity of PD has been recognised. What we do know is that Parkinson’s is neurodegenerative, it gets worse with time, and has to do with the brain and all that it controls; that is, everything.
There are many faces to this debilitating disease. It may be an aged relative in a nursing home, a newly diagnosed mother in mid-career or a colleague retiring early because the persistent tremor in their hand is causing such uncertainty and doubt.
In the past 15 years, I have come to know the condition intimately as it has come to know me. The longer I live with PD, the more I fear its impact – in particular the resolute determination it seems to show in searching out skills it wishes to degrade.
Its impact has changed over time. Perhaps due to a more determined daily exercise regime, some movements have improved while others have been become more problematic. Standing up from a sitting position or getting out of the car is as difficult, but my walking is less troublesome. I am controlling the aching fatigue by accepting, without a fight, the blessing of an afternoon sleep.
But just to make sure I don’t get too comfortable, and because it hates to be beaten, PD has recently caused swallowing to be more difficult and the drinking of fluid to often cause bouts of uncontrolled and frightening coughing.
The depression – that most unwelcome of companions – which had accompanied my journey with PD from the earliest days has, with better targeted medication, lifted. My speaking capacity has responded well to regular therapy, but then executive thinking and cognition have faltered.
At the same time, I have noticed a disturbing undermining of my communication skills. When chairing a meeting at work or chatting socially, a cognitive cloudiness often makes me feel half a second behind the natural flow of a conversation. This “Parkinson’s pause” undermines the vocabulary range and sharpness that I used to have.
As a result, on bad days conversations have become shorter, more mechanical statements of fact and I find myself listening more than speaking, which may not altogether be a bad thing. I haven’t lost the capacity to think logically, but just to keep up.
This leads to loss of confidence, and if pressured to respond, anxious blankness. I have learnt that stress banishes the capacity to deliver an effective punch-line.
So conversational anxiety has become normal. I know what to say but lose the courage or drive to step in when it’s my turn. The spontaneity, free movement and joy of conversation are fading. I’ve learnt that to stand in silence when people expect you to speak is a difficult and lonely place to be.
The past year has also brought the total collapse of my handwriting and keyboard skills. Even with the utmost care, there is no longer a readily identified connection between thought and the jumbled scrawl that appears on the page.
To top it off, reading has become a great challenge rather than a pleasure. PD makes it difficult to keep my eyes open when reading. This necessitates painful Botox injections into my eyelids every three months. I hate this excruciating procedure but not as much as I hate the loss of elemental and universal skills such as reading and handwriting.
Still, there are positives. The difficulty reading introduced me to the joy of audiobooks. I can still listen with real pleasure to others read to me, a fond memory from childhood.
Parkinson’s has also reminded me of the value of daily exercise, especially walking, particularly if the excursions reveal the beauty of birdsong in the morning, the power and might of the ocean or the mysteries of a star-filled night.
This World Parkinson’s Day also belongs to the clinicians and researchers, the doctors and therapists and especially the families who devote their lives to the treatment, care and hopefully cure of those living with PD. Hopefully, this day of awareness and action will convince responsive state and federal governments to introduce policies to reduce the burden of PD.
Those who live with Parkinson’s often spend years filled with fear and anxiety about their future. World Parkinson’s Day gives us all the opportunity to salute the strength of those living with the condition and to walk with them at least part of the way.
My journey with Parkinson’s continues to be difficult, but the condition has not yet won out. The disease, so adept at taking away, has also allowed me to witness almost unbelievable kindness and bravery. I have seen so many fellow Australians face Parkinson’s with courage, resilience and determination. They remain upbeat when all seems dark, concerned with others when no one would blame self-pity and determined to fight on, no matter the cost.
John Watkins is a former NSW deputy premier and former chair of Catholic Health Australia.
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