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Claire - Day To Day With Parkinsons Disease

29 Hours

Twenty-nine hours. Tuesday morning to Wednesday afternoon. A blazing trip down the highway to Toronto to visit two of my kids. Eight, nearly nine hours of driving. Two hours back and forth on a train from my son’s home in the extreme suburbs to my daughter’s home in the heart of the city. Seven hours spent in bed, most of them asleep. A lot of walking. A lot of talking. A lot of fun crammed into a small space of time, all of which now seems like an improbable dream.

But I did it. I finally screwed up my courage and hit the road. I will do it again even though the fallout has been somewhat severe, but not nearly as bad as I expected. Ativan to the rescue once again. I had hoped to wean Michael off his three days on this strong medication but his anxiety was quite severe after I returned so I am taking it slowly. A debrief from our caregiver was positive – no calamities – but it was obvious from the complete withdrawal upon my return that my absence had been felt. Slowly in the evening his body softened and his glassy-eyed silence was broken. By this morning Michael slumped again, another brief – thank goodness – but disquieting rigid withdrawal.  He is better now, more than twenty-four hours after my return. All in all, not too bad.

I have turned the corner and will most likely try another such journey in the near future, though I won’t stretch the time to more than one night just yet. Maybe a daring thirty-six hours next time.

My joy was loud. The visit with my kids was, of course, wonderful, but the drive was nearly as much fun. I whizzed my way down the highway with my music blaring, stopping only for bathroom breaks and strong coffee. I discovered I have cruise control in this new car, a novel phenomenon for me. Let me say that I love to drive. I love a stick shift. I love being in control. But I thought I’d give the technology a try since I have it.  I set it for about two km/hour slower than the lowest posted penalty speed, 120 km/hr – a mere $95 fine if caught compared to the $10,000, instant vehicle confiscation and license suspension for 150 km/hr.  Having learned my lesson a few months ago after receiving my first ever speeding ticket I was trying to behave despite my lead foot. I set the speed then tentatively removed my foot from the gas. What an odd sensation. The car seemed to have it’s own mind and my job was simply to sit back with my hands on the wheel. The tachometer sat rigidly in one position and my speed never wavered no matter what the terrain. It took me a while to adjust to not being in full control even though I knew I could override the system at any moment to pass or slow down. Joyful Joyce seemed to take charge and wanted to make her own way forward with me as passenger.

I drove past places where I have friends. I briefly entertained thoughts of dropping in on a few. How nice it would be to have that freedom but, even if I’d had their contact information on me, my time was severely restricted and Joyful Joyce needed to get me home.

So instead I spent my time singing, breaking into hormonal menopausal sweats to sexy music, and observing cars. I can add a new fact to my overly generalized list of purchasing tendencies in our society.  Where middle-aged men like expensive convertibles and young men like souped up cars, women of a certain age seem to go for wildly coloured subcompacts, present company included. My hot green little gem was matched by shimmering blue and bright red vehicles of a similar ilk, mostly all driven by women probably wearing Birkenstocks or at the very least therapeutic orthotics in their shoes. These cars are a bit like those sensible shoes but with a big sparkly bow, or like wholesome brown bread with a sticky, sugary icing. We’re trying to be wild and free of our responsibilities but cannot shake our deeply rooted sense of duty. I wondered if my sensible sisters in subcompacts were also breaking free for a much needed vacation, listening to loud music on their solitary adventures.

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    Claire - Day To Day With Parkinsons Disease

    One woman's journey as a caregiver to her husband in the advanced stages of Parkinson's disease... Loss of freedom as we have known it is a common adjunct to any disease. In the case of Parkinson's Disease it is the slow degeneration of physical capacity that limits freedom, and later in the disease for some, the cognitive impairment that limits one's ability to make rational decisions about anything, including what clothes to wear. The story of our lives together with this disease is what I hope to bring to you. Be assured that it won't be a tragic tale but I hope one of grace, humour and love for, after all, we are all struggling with life's trials in one form or another. Ours is well mapped out for us at least with all the literature available on the subject. I hope to bring it off the pages of the medical journals and into the realm of the ordinary.

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