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.
Loading
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.
The Opinion newsletter is a weekly wrap of views that will challenge,champion and inform your own.Sign up here.