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. Once again, he takes us deep into the introspective thoughts that come with a life with Parkinson’s. In this submission, number five of six, Brock shares how he acknowledges the impacts of Parkinson’s on his family and friends.  

Written from the snow-covered 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 communications@parkinson.ca or commenting below. 

Parkinson’s impacts all

I often hear the phrase “victim of Parkinson’s”.  

It is hard to escape the feeling of being a victim to this disease. It happens to you. You have no control over how you developed it, how fast it’s going to progress, when it will rear its most ugly head and what symptoms will present as your version of Parkinson’s.  

Yet playing the victim is exactly what I want to avoid. In victimhood I cannot navigate the transitions – accepting the ending of the old way, negotiating the ‘letting go of the old ways’ and accepting the new way of thinking and acting, and finally launching a new beginning.    

A victim? Maybe, but I’m not alone

It is however equally hard not to be a victim.  

Parkinson is a very personal journey. It feels like no one else suffers the rudely interrupted sleep, the discomfort of stiffness and pain and the relentless shaking.  I feel alone in my struggles to use utensils, to put on socks and to ease onto the gas pedal without the tremor lurching my car forward in ways that are unsafe and unnerving to my passengers.  In all of this, I must never forget that many people suffer from illness, disease and injury.  I cannot let my challenges obscure the need for empathy for others. And yet being a victim of Parkinson’s hovers on the edges of my mind, held at bay by optimism, determination, stubbornness and the fact that I am not alone. Parkinson Canada provides a myriad of support, information and opportunities to engage with the Parkinson’s community.  

More profound than the support from Parkinson Canada and the community is the support and love from old friends and family. In his song, Let Time Go Lightly, Harry Chapin wrote: “Old friends know where you are, and they know where you’ve been.” Old friends have experienced me at my best (and worst), seen my decline and accept it as the evolving me. Their empathy, support and acceptance are all helpful in navigating the transitions I face.  

Collateral damage of Parkinson’s

The one thing I must never lose sight of is that my Parkinson’s is not just affecting me.  It affects everyone in my life. My children are affected, as their once robust father begins to slide. They provide endless support, love and affection.   They read and learn, anticipate my needs and share their stories knowing I can relate, even if that relating comes from past experiences that are no longer possible.   

And then there is my wife; the most immediate and intimate collateral damage of this disease. She put up with years of absences – mental and physical due to the nature of my work, and now this!  

Everything about our imagined retirement has changed: the kinds of vacations we chose, the housing choices we will make and the spending decisions we contemplate. She waits patiently while I struggle with tasks, she pours my beer and finds humour that lightens the moment. She encourages and pushes me to keep testing my limits, pushing away that victim stance that floats on the edges of my mind.  All of this and more has been forced upon her because of my Parkinson’s. She did not choose this, and I will never forget that. She has her own needs, hopes and dreams. She has her own life to live, and it is vitally important that she still gets to live that life.  

For those with solid balanced relationships, this becomes the labour of an open-hearted compassion. For those relationships rife with regret, neglect and resentment, this stresses the bonds of connection, pushing the relationship into deeper stress as fears of physical decline what it means for the future lead to repeating old patterns.  

With the emergence of every new beginning, my family and friends (old and new) are sources of comfort and reassurance that not everything old is lost. They form the bridge that carries me from old ways, through the mushy middle, and on to new beginnings.