Having Parkinson’s is just one aspect of a person’s life story. We want to share more stories of the varied lives of people currently living with Parkinson’s.
I have long had a personal connection with Santa Cruz, California. It came about entirely through a happy accident – a chance encounter with a lady who hailed from there. We met each other on Sydney Harbor in 1987, immediately fell deeply in love and in five years would marry.
During the 30 years we were together we would visit Santa Cruz multiple times, with it becoming like a second home to me. My latest visit in June this year was coincidentally the sixth anniversary of my Parkinson’s diagnosis.
Funnily enough, I also believe that my Parkinson’s story starts in 2003 at a Santa Cruz watering hole by the name of The Poet & the Patriot.
After settling in to imbibe some restorative beverages, I made my order. The server came back with my drink and when reaching out my left hand to secure the glass, my hand promptly went berserk!
Strangely – or should I say fortunately – the progress of my condition remained glacially slow for the next few years.
“It wasn’t until late in the first decade of this century when other symptoms made their presence known.”
Around 2008 my sense of smell all but left me. A computerised tomography (CT) scan of my sinuses and an eye-watering nasal endoscopy revealed nothing out of the ordinary.
Then came the random drooling, usually at an awkward moment. (But then, drooling at any moment automatically renders it awkward).
After this came the mumbling. I work in the medical records department of a hospital. One of my duties was then working in the enquiries section.
I was one of those people who managed to always sound chirpy and upbeat on the phone. Now, at times, it seemed like I had a mouthful of marbles when I spoke, usually in a dull monotone. When asked to repeat myself, I could only respond with a slightly louder mumble, frustrating communication all the more.
By this stage I had a fair idea of what was wrong, as my mother had Parkinson’s and I was displaying all the same symptoms. However, I didn’t want to know about it. I was very much in denial.
I was also distracted as I had become a caregiver for my wife who had Pick’s Disease – a type of frontotemporal dementia – and was rapidly deteriorating. She would pass in 2017.
My Parkinson’s confirmation came in the form of a chance meeting on the hospital grounds with a neurology professor the following year. I recognized him as the one that had diagnosed my wife.
After striking up a conversation I noticed he was studying me. At a pause he said: “Do this” (foot stamping), “Now do this” (finger tapping).
After several seconds of compliance, and feeling like a total twit, he stopped me with: “Not good. Go to the front desk and make an appointment to see me. Tell them it’s urgent.”
In a way, I was relieved at my diagnosis as, in its early stages this disease is very similar to much worse conditions such as Multiple System Atrophy or Motor Neuron Disease. Parkinson’s? Now, THAT I can deal with!
I’ve heard Parkinson’s cynically described as ‘the gift that keeps on giving’. For me, it’s been one that’s kept on taking – taking my fine motor control, my sense of balance and sense of smell.
But one sense it couldn’t take was my sense of humour, and that’s what’s kept me going these past six years. Also, while I initially found my diagnosis daunting, I realise now that without it I would not be promoting Parkinson’s awareness.
It seems that Fate has steered me in this direction, whether I liked it or not, and I’m OK with that. In addition to my daily work at the hospital, building awareness around Parkinson’s helps me feel that I can continue to make a meaningful contribution to others.
It is widely thought that in the Chinese alphabet, the character for crisis is the same one for opportunity. I’m not sure if that is so, but it is really something that I now believe.
“… But one sense it couldn’t take was my sense of humour, and that’s what’s kept me going these past six years.”
