Brock Carlton, a member of the Parkinson Advisory Council, shared with us a series of six stories encapsulating his experience with adjusting to life with Parkinson’s. From diagnosis to sharing the news, to ebbing and flowing with the evolving challenges, Brock’s perspective gives real talk but also delivers strength in accepting what is and finding a way to enjoy life to its fullest even with Parkinson’s.
Written from the snow-dusted slopes of Gatineau Park during a late-winter ski trip, Brock was inspired to share. Whether you’re an avid skier or prefer staying indoors, if you’d like to share your story, too, get in touch by emailing email@example.com.
I was bent over tying my shoelaces, having just completed some coordination tests when my neurologist said, “I am changing my diagnosis from an Essential Tremor to Parkinson’s.”
I kept on tying my laces. Looking down at the floor as the words sunk in; I have Parkinson’s! She explained why she had changed the diagnosis. I did not really understand, nor did I care. My body has been doing weird things recently. I’ve developed a hunched posture and require more energy to stand tall. I’ve had fits of restlessness in the night, a noticeable loss of strength and endurance. I knew. My body, my unassailable temple was no longer inviolate, relentlessly reliable… dependable.
She encouraged me to read up on non-tremor symptoms. “But don’t read too much, it’ll scare you,” the doc warns me. “There is no cure, there is no predictable path of progression. Everyone is different. The only common feature is that exercise seems to slow progression….so keep exercising.”
And that was it. I left feeling that everything had changed, and yet today and tomorrow would be no different than yesterday; except that every foible, misstep, or memory lapse would be seen as a sign, a confirmation, an indication of Parkinson’s taking hold. It will now be my permanent companion; with me in every thought and action. It will be my shadow in the light; my nemesis in the dark.
The question came to mind: How do I build the resilience to face this new reality?
The answer is complicated. I need new knowledge; new connections/relationships and new ways to contribute. I need to leverage what existing skills and interests I have to ensure continuity between my life before the diagnosis and this new reality. And to sustain the sense of contribution to people and communities that drove my career.
This is where Parkinson Canada is invaluable. They provide the things I need for building resilience in the face of this disease; knowledge, community and ways of making a contribution. The resources such as Every Victory Counts and the research reports provide a wealth of knowledge about the disease, as well as updates on emerging research related to things like medications and coping strategies. The support groups provide professionally managed networks for individuals struggling with the same disease in its many and varied manifestations.
Thanks to Parkinson Canada I am now doing Tai Chi as part of a University of Ottawa study on the benefits of Tai Chi for people with Parkinson’s. I have joined a Parkinson’s choir for help with voice projection and social connection. And the volunteer possibilities – such as the Ambassador Program and PAC – connect me to my past as a communicator and government relations specialist, while contributing to the lives of Canadians with Parkinson’s.
In those inevitable low, blue moments Parkinson Canada’s services and supports are a constant reminder that I am not alone.
In Brock’s next submission he speaks candidly about his experience with telling others he has Parkinson’s.