Getting Back to the Future: My First Decade of Living with Parkinson’s Disease (part two)

Apr 5, 2021 | Blog, The Lived Experience

Getting off the Couch: Wellness to Thriving

By Guest Editor: Larry Linton

 

When we left my story in part one, I finally got off the couch.

I went upstairs and retrieved my running gear from the back of my closet and went back downstairs into the basement (it was Canada in winter after all!) I booted up my dusty treadmill and started walking. I no longer cared what it sounded like. The important thing was that I was moving forward — literally.

Slowly but surely over the next few weeks, I noticed that my “slap” was quietening, and I was returning to a more natural walking gait. I persevered and then started jogging for one minute after a ten-minute walk.

The more I walked/jogged, the better I felt. I noticed that my thought process began to change positively as well. I was starting to think in the present, not the future or the past. I was a 50-year-old, back on the treadmill.

I kept running and running – and just like another movie character Forrest Gump – completed three half-marathons in five years! 

Growing up, I loved drumming. But living in an apartment in Johannesburg with my widowed mother, it was never the place to own a drum set. Instead, I banged my mother’s furniture to pieces. The lounge suite was my drum set. In my mind I was surrounded by a sixteen drum, ten cymbal set.

Then life took over – matriculation, university, marriage, and emigration – first to New Zealand and then to Canada. Before I knew it, I was only drumming on the dashboard of my car when stopped at a traffic light!

Seeing the positive results with my running I decided to return to drumming. I purchased a cheap, entry level electronic set that I could play with headphones. Boy, I wish that they had those when I was in my mother’s apartment! I went further and also purchased a set of bongos, congas and even cowbells – you gotta have more cowbells!

I started playing an hour every day and just lost myself in the beat of a song. My arms – particularly my right side – felt fatigued. But my twitching and tremor in my right hand stopped. I took lessons online and in person; and then, feeling confident with my new rhythms, I ventured out to “open mics” and became known as “The Conga Guy” – not the guy with Parkinson’s.

I was even invited to join a band to play as a percussionist in the famous “Beaches International Jazz Festival”, in Toronto. My mother would have been proud!  

However, last year I noticed a change; not with the physical symptoms, which have been well maintained even up to today; but in my executive functioning. I started to forget words and have, at times, struggled to complete a sentence. Also, I couldn’t retain information, easily forgetting things. There were times in partners’ meetings where I had to ask for the question to be repeated because, by the time we got to me, I had forgotten the question.

As a corporate immigration lawyer, I always took pride in devising creative visa strategies for my clients, but found that I had lost the ability to do so.

My neurologist suggested a repeat neuro-psych assessment, and the results confirmed cognitive impairment, indicating a further progression of the disease. Parkinson’s had finally caught up to my career.

The interesting thing was how I reacted to this news! With a stronger mindset, I was able to accept the news much quicker and with less emotion. I didn’t fall back into a depression and head for my couch. I accepted the news and kept living in the moment.

Looking back, my life changed dramatically when I was diagnosed. But it changed for the good. Today, I am living more mindfully in the present, surrounding myself with loving and understanding friends and family.

I have a new couch. But I decided to keep the old one. I don’t sit on it much these days, but I do find myself glancing at it on my way out the door for my morning run.

Parkinson’s has taken my place on the couch – like that old friend from out of town who says he is only staying for a few days but hangs around for a while. It is part of my life, but it no longer controls me. More importantly, it doesn’t define me.

Like Marty McFly, I have gone back to the future!

 

More to come on my journey, which continues to pivot to giving back and my new “career” as a patient advocate. You can also listen to me tell my story here.