Personal Reflection: What Living with Parkinson’s Can Contribute to a Post-COVID19 World

Apr 21, 2021 | Blog, The Lived Experience

By Guest Editor: Larry Linton

Part 3 of a series

Despite the unbearable loss of life and the devastating impact on millions of people worldwide, conversations these days are increasingly turning to what a post-COVID world might look like. This too shall pass!

Living in a post-Parkinson’s world is, unfortunately, not as close. But our lived experience can certainly contribute meaningfully to those discussions.

There are many parallels between the COVID-19 pandemic and living with Parkinson’s

On March 8, 2020, the World Health Organization declared COVID-19 a pandemic. On that day, all our lives changed fundamentally, forever. We had no idea what our lives would be like from that day forward. Would we get sick? Would we die? What would happen to our jobs? Could we continue working? Could we work from home? How would we cope?

Those of us with Parkinson’s disease remember the life-altering day of diagnosis just as vividly. We had the same concerns, the same questions, but very little understanding of the situation to begin to formulate answers to those questions. 

COVID forced us all of us indoors, and the phrase “social distancing” became embedded in our vocabulary. Parkinson’s adds many more complex layers to that status. The weeks that follow the date of diagnosis typically involve the roller coaster ride of the emotional five stages of grief, with denial topping the list! We start living a lie; we come up with excuses: too much coffee is to blame for the tremors; overtraining is the reason for our uneven gait. Perpetuating that lie increases our anxiety, to the point of panic attacks in some of us. That forces us to withdraw even more. We become reclusive, pulling away from family and friends, living life on a couch.

At some point, like has happened with COVID, many of us reach the point of acceptance with the new reality of Parkinson’s. We adapt, we prioritize, and we start to live life with the new normal, and no longer against it. We start to live more intentionally.  

A study by the Becker Friedman Institute1 found that the pandemic-induced shift to working from home has lowered the commuting time among Americans by more than 60 million hours per workday. The findings are that people spent over one-third of the extra time on their primary job; and then nearly one-third on childcare, outdoor leisure and a second job, combined!

We have all become astute with scheduling and attending Zoom meetings, effectively bringing the office into our homes. But we still forget to unmute ourselves and remove some filters – attending a court hearing as ‘a cat’ is one example. We make sure that the camera is positioned so that it appears that we are wearing a full suit, when in fact, sweatpants are the favourite choice from the waist down. This provides us with a cover. Turns out we enjoy working from home, and most of us hope that it continues!

Working from home with Parkinson’s provides the same “buffer”. We can, instead, focus on our productivity and not our visibility. We can relax. Our tremors are off-screen and invisible. But the quality of our work and overall productivity is well maintained, or in some cases, even better. We don’t have to explain that the tremor is not a sign of nervousness. We don’t have to explain that the slurred words are not a sign of drunkenness.

With COVID, the lines between our personal and business lives have become blurred, and in a sense have blended into our true and authentic selves.  

Unable to see our primary health care provider in person, telemedicine brings the check-up process into our homes; and it allows our doctors to witness us in that same blended environment. Instead of the in-person, clinical setting, where we tend to focus on the things that are going well, our health care provider sees us earlier in morning, for example – with dark rings under our eyes, indicating the lack of sleep the night before. Telemedicine makes us a co-partner in the management of our disease and puts us at the centre of care.

Today, while we are still experiencing the pandemic, our homes are full, our kids are schooled virtually. Some of us have lost our jobs and are no longer generating income. Our roles and responsibilities have changed. Relationships have ended.

So too, with the impact of Parkinson’s. It interrupts careers. We question our value as a spouse and a parent. Our spouse, or significant other, becomes our Care Partner. We have the condition, but the burden is carried by them, too. In some cases, it gets too much.

The COVID-19 pandemic has had some upsides, as can a Parkinson’s diagnosis

COVID has given some of us pause and the opportunity to learn new skills and tap into our creative sides. The typical nine-to-five “rat race”, for many, has stopped. Unable to attend gym, we turn to online, in-home workouts. Meditation has become routine. We download calming apps. Peloton sales have soared, and dumbbells and weights are hard to find in stores or online. Some of us have taken online cooking courses; we’ve completed huge puzzles; we’ve built model airplanes; we’ve started doing crosswords. Some of us have learned to play a new instrument. We’ve reinvented ourselves.

Parkinson’s gives us the same opportunity. We learn to live intentionally. We know that adversity is a better teacher than success, And, until we can have a similar discussion about life in a post-Parkinson’s world, our adversity continues to be our triumph.