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.
As the last of the series, story six describes Brock’s appreciation for how Parkinson’s has given him opportunities to live in the present moment and find deep fulfillment in connecting with others, while still grieving the future he thought he would have.
Written from the snow-covered slopes of Gatineau Park during a late-winter ski trip in 2022, 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 firstname.lastname@example.org or commenting below.
First, it takes
I am sitting in a back-country ski lodge, surrounded by peaks and glaciers, trading end-of-day ski stories with others staying at this lodge. Their stories are of this day, mine are of the past. I cannot ski the steep slopes and deep powder anymore.
It slowly dawns on me that most of these people are in their late 60s-70s. A sadness comes over me. Their current reality was my presumed future: robust, physically capable and continuing to enjoy life-long pleasures like downhill and Nordic skiing, whitewater canoeing, cycling and hiking…
Parkinson’s has taken away the hope of following that path. The fluid athleticism which I brought to my physicality, now undercut by my lack of dopamine production, is no longer a certainty. This is not the decline I expected from aging. It is a cliff; a disconnect between my brain and my muscles. Muscle memory for complex tasks seems gone. I cannot create the image in my mind of some physical tasks, and then replicate those images in muscle movement. Parkinson’s leaves a blank space in my mind.
The take-aways are growing
Parkinson’s has taken away my sleep. I wake up several times in the night to pee, to untangle myself from bed sheets and pajamas, or to roll over awkwardly. Each night, I get up to stretch my legs and lower back. This seems to help diminish the potential for insomnia. I get up slowly, easing into each day uncomfortably.
Ever hear of Venngo? People around me have talked me into signing up. While trying to register, I made a mistake while typing in my email so I didn’t receive a “verification code.” I call their helpline but my weakening voice has them repeatedly saying, “I can’t hear you,” “can you repeat that,” and “I missed the first few words.” My voice, my sleep, my handwriting and everything in between, the list of take-aways grows over time, and with it grows a deepening sadness, victimhood and depression.
Parkinson’s can give opportunity in return
As the end-of-ski-day storytelling continues, I push away the sadness and replace it with gratitude. I did these things too. I know their feelings of accomplishment and fatigue. I am grateful for having had these experiences and grateful for being able to relate to the joy captured in their stories. Gratitude opens the door to empathy and meeting people where they are. I strive to listen differently, with less judgment and more awareness of other’s realities.
With my diagnosis, I can relate to their limitations and challenges in new ways. I more deliberately search for the common bond of humanity between us. Because of Parkinson’s, I have grown more comfortable with my own vulnerability, not hiding it, but exposing it as part of me.
Parkinson’s brings focus to the present: On health, sleep, diet and deliberate, regular and robust exercise. Parkinson’s challenges me to reconsider what my legacy will be, no longer expecting to be in my 80s leaving a legacy of action – of doing. My legacy now is how I connect with people.
Let’s be honest, I am not sitting on a mountain top of empathy, compassion, calm and acceptance. I hurt. Much of what Parkinson’s gives is challenging to attain. I strive to rise to this challenge. But I am not there yet… only aware of the gifts Parkinson’s presents. I am grateful that Parkinson’s is showing me this pathway. I need now to rise to the challenge.
Never alone in Parkinson’s
If you or someone you know is struggling to reconcile what the future looks like after receiving a Parkinson’s diagnosis, you are not alone. Parkinson Canada can connect you with support groups to help you discover that while the future may look different, a long life of connection and fulfillment is still possible.