The following series of Blog posts come from Jay Whiteside in Toronto, Canada where he keeps in touch with family and friends in a series of newsletters he’s named as ‘What’s Shaking’.  Jay has edited highlights from ‘What’s Shaking’ for us to hear firsthand how he is managing his Parkinson’s symptoms which were first discovered over ten years ago. He kindly gave me permission to post seven of his episodes here.

Robert Rodgers PhD
Founder 2004
Parkinsons Recovery

Episode 5: Living my life, not the disease.

“Jay, you’re living your life, not the disease,” said a medical team member at my pre-summer check-in. That’s a mantra disguised as a compliment. I take great pleasure from that observation and am propelled forward. 

So, I ventured on the squash court for the first time in 30-years. I was no Jahangir Khan for sure. But I didn’t embarrass the club or my host with my performance. And at least the following days’ muscle stiffness was not  rigor mortis. Since then, I’m playing regularly…line up ten guys my age on a squash court and ask which one has Parkinson’s. You won’t pick me! 

I visited family on my first unaccompanied transcontinental trip in ten-years  with Parkinson’s. Well worth the effort; just the effort was strenuous. Travel is a marvel – and you can’t beat the welcoming arms of family at your destination – but the literal people-packing logistics are a coordinated effort to exploit or aggravate brain damage. It’s a challenge for those of my ilk.

Further to this, students of the Parkinson’s condition will recognize a concern about impulse control. In some cases, the interaction of the disease and medication will produce potentially embarrassing “impulse control” side effect issues, like gambling,  excessive carnal desires, obsessive-compulsive tendencies, and so forth. I face the prospect of impaired impulse control with big time apprehension.

So, I signed up for an online seminar on the topic. My first. It was a support group for those with hideous experiences to bare. Like the person who admitted he is compelled to disrobe completely each time using a toilet. 

He can recount it now with humour recalling people’s reactions to a wrinkled nudist in a public restroom. Ha-hah, right. It strikes fear of imminent humiliation for me. 

Laugh all you want, but while shopping at Nordstrom last month I was spooked I’d wander out of the change rooms naked. I was so preoccupied with not presenting myself nudus nudum, that I locked myself out of the change room. My clothes were inside. “…ROSIE?!”

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