Brock Carlton, a member of the Parkinson Advisory Council, has contributed a series of six stories encapsulating his experience with adjusting to life with Parkinson’s. In this third submission, of six, Brock shares his thoughts around the essence of time: the investment of time to learn about Parkinson’s and how to manage it, the time it takes to complete daily tasks and the sense that time doesn’t always feel on his side.
Written from the snow-dusted slopes of Gatineau Park during a late-winter ski trip, Brock was inspired to share. Be sure to check out the first of this series and follow along as we share his story.
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Time and patience
We are in the cross-country ski parking lot in the Lac Philippe sector of the Park. It is full-on winter; sunshine and –15 degrees Celsius. Beautiful conditions for a good ski. We will ski through a valley to Lac Taylor where the sun casts sharp tree shadows along the shoreline, framed by a blanket of white on the lake, contrasted by the deep blue sky.
In the parking lot my wife jumps out of the car, gathers her things and is ready to go before the cold gets to her toes and fingers. Me – I emerge from the car, unfolding slowly. I wrestle with my mitts, fiddle with my sunglasses and situate my pole straps.
Parkinson’s takes time and patience; not only for me but also for those around me. It takes time to get going in the morning. It takes time to get dressed, struggling with sleeves and zippers. It takes time typing these words. My fingers just don’t work like they used to. It will also take more time than planned to ski this trail.
It is frustrating! When do I ask for help? When do I assert my independence and struggle through it on my own?
Time spent learning and coordinating
There are the many medical appointments: GPs, neurologists, physiotherapists and movement specialists. These take time, too. Not just the time for appointments but also time for me to learn about my condition and to own it, along with the various treatments and management strategies that work for me.
There is no natural coordination between GPs, neurologists and physiotherapists. I have to be the link. Neurologists are available infrequently at best. GPs are not Parkinson’s specialists, so they work with deep care, yet partial information. I have to be the primary monitor of my evolving condition and my own advocate. It all takes time.
Invest the time
The thing is, I am not on my own. There is so much to learn, engage with and do in the Parkinson’s world, if I am willing to invest the time and energy. Webinars, reports and updates on every imaginable topic from highly knowledgeable and caring people through invaluable organizations like Parkinson Canada. There are support groups, discussion groups of various orientations and there is stuff to do: spin classes for Parkinson’s, choir for Parkinson’s, Tai Chi for Parkinson’s, ballroom dancing for Parkinson’s, boxing and more. They’re all investments of time in the hopes of slowing down the progression.
Having Parkinson’s is the ticket into a new community – ‘Parkies,’ as the Michael J Fox Foundation calls us. A new group of people who share the realities of living with Parkinson’s and with whom I have a natural affinity. Unlike my professional and personal communities, this is all new. There is no history and no structure to these connections. Simply new people and new relationships to build.
This thought comes up while on a zoom call with a support group. I have no history with these people, I barely know their names. I am opening up in ways that are unnatural in the newness of these connections, yet it feels totally natural in the assurance that these people get what I am dealing with, thinking about, stressing over and muddling through. I am new to the Parkinson’s community and have no track record, no street cred. Just another way Parkinson’s takes time… building a new network of relationships that will serve both my needs and those of the community.
Mic Jagger sang “time is on my side, yes it is” … and yet for us, it is not. Time will see Parkinson’s diminishing my strength and energy, my physical abilities and, possibly, my cognition. The question is: how am I going to spend the time and invest the energy I have left?
In Brock’s next submission he opens up about transitioning through not just stages of Parkinson’s, but also stages of life with Parkinson’s. Follow us on Facebook and Twitter for updates on when the next story is available.