patient being shown empathy by Doctor

Brock Carlton’s story part 2: Sharing the news

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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. In this submission, number two of six, Brock speaks of the challenges behind sharing the news of his Parkinson’s diagnosis. In his previous submission, he covers what receiving the diagnosis felt like and how he steadied himself in the face of that news. Be sure to check out the first of this series, too.

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 or commenting below.

Telling others

I am sitting in my car parked outside my neurologist’s office. I am in an emotional tunnel, zeroed in on my new diagnosis and what it might mean. Slowly the darkness lifts as I realize I have to drive home and continue on with my new life.

The question is: what next?

Every image of sharing this news is full of emotion. Mostly fear of my own emotions (can I keep them under control?) and the fear of the reactions of others. I have to be mindful that this news may trigger unhappy memories for others. Will someone in my circle be triggered by memories of a loved one who suffered from Parkinson’s dementia and see that as my inevitable future? Will people bring drama, pity or sorrow? Will they aim for levels of intimacy and empathy deeper than I am comfortable with? Will our kids be shattered by images of their father frail and declining at an age too young for their hopes and expectations? Will my own anxiety affect the way I break the news, thus influencing the reactions?

One step at time

I start with my wife. I rehearsed, but it didn’t matter. I just blurted it out with no set-up, no “I have some troubling news to share. You better sit down.”

Instead I said, amidst some tears, “I have been misdiagnosed. The tremor is Parkinson’s.” I do not remember clearly what happened next although I know there were some tears, hugs and words of support. Over the next couple of days, my wife went through many emotions. She worried about organizing my funeral and the complexity of family dynamics. She lamented the end of our adventures and travel. She feared losing her own life, autonomy and sense of purpose. Eventually, we settled into the feeling that we just had to move on and live with this new reality, this new backdrop to consider in everything we do. We decided that for now, telling people would open us up to the risk of me being written off as frail and insignificant; a life left with no vitality. For now, no one else needed to know. We needed time to think, read, reflect and get a handle on this. With that we settled into the routine of life accompanied by this new reality.

The time felt right

When we were finally ready to share, the first and second circles of sharing with loved ones and friends went well.

Our kids were strong, loving and supportive. They immediately started reading up on the disease, mostly looking at the Parkinson Canada and the MJFF websites. My brother and sisters reacted with concern and care. As I became more at ease with my news, I shifted the way of telling my story, diminishing the intensity and emotional energy to a rather straightforward message of, “yes, this sucks, but,” accompanied by a, “We got this,” attitude.

When we told our financial advisor and friend, the question to him was: does this change our financial management strategy? Do we have enough money to manage this complicated future?

Other people’s reactions varied. Some expressed sorrow, some didn’t seem to know how to react, and I often helped them out of their discomfort with assurances that we are managing this. I found their discomfort awkward for me. Many said they know someone else with Parkinson’s – a father, a brother a friend – and in those moments some said nothing else, leaving the silence of an untold story. Leaving me feeling that they did not want to trouble me with images of an unhappy future.

For me, in turn, I did not ask questions. Leaving them to the private moment of reflection. Others told stories of a long and reasonable quality of life while managing the disease to the end. Recently I spent a week with a group of people I didn’t know prior to our time together. I started our first conversation by saying, “You may have noticed my tremor. Yes, I have Parkinson’s and it’s ok.” They appreciated the straightforward approach and over the week we had many conversations about my journey, and about their own frailties, injuries and fears.

What I’m learning on this journey is vulnerability is a clear pathway to the humanity in each of us.

In Brock’s next submission he speaks candidly about how he navigates his symptoms.