How Have I Managed my Life with Parkinson's for Twenty Years?

Written around 2022

I am an upbeat person. It is my default state – I see the glass as half full rather than half empty. When life gets in the way I unburden my angst on anyone who’ll listen, get the tears out of my system and when I’m all cried out – I bounce back and move on. Some  call that resilience. I call it luck!

Never was I more thankful for my positive disposition than twenty years ago, when a neurologist announced  casually yet with conviction that I had ‘garden-variety Parkinson’s disease.’ ‘Garden variety Parkinson’s disease??’ I silently repeated over and over again, sobbing all the way home. “What other kind is there?” I was 56 at the time – about 15 years younger than my mother was when she was given the same diagnosis. Sometimes Parkinson’s can run in families, and I could not erase from my mind the image of my mother with (what I now know was) advanced disease. Was this my future? I was numb with fear, and optimism felt remote and unattainable.

I reached out for support via an email in which I poured my heart out to almost everyone in my contact list, and I eagerly awaited the arrival of caring and compassionate messages that might soothe my terrified soul.

The responses to my email took me by surprise. “You’ll be fine!” …”You’re strong!” and ”You are such a positive person”. Evidently people weren’t used to seeing me floundering, so they chose to offer encouragement above compassion. In some ways that left me feeling afraid that I might let them down, and at the same time their words strengthened me and gave me hope, for they reminded me that I had survived crises in the past and would survive this one too – though I had absolutely no idea how.

I began to consider alternative perspectives that might enable me to gradually view the diagnosis and its progression as life lessons rather than life losses. That said, it hasn’t always been easy. There have been times during which I struggled with feelings of desolation and hopelessness. I wrote the following during one such time:

A Dark Place

Enticed by a kaleidoscope of vibrant colours and melodious sounds, I step forward uncertainly and inhale perfect stillness. I close my eyes and allow tranquility to wash over me like a gentle rainfall. I hold tightly on to this moment because I know that when I open my eyes the magic will have vanished, leaving me in a deep abyss, lost and afraid.   How will I rediscover joy ... how will I allow the beauty of nature to move me ... how can  I replenish my energy through solitude not isolation and how can I seek rather than avoid connection. I want to once again feel passionate about life, about challenge ... about accomplishment. But joy and passion have faded, and in the absence of hope my soul is bewildered and troubled.

 And now – as I look back on my 20 year Parkinson's journey it becomes important to me to know what it was that helped me at times like that. How did I emerge from that dark place, and how do I cope with emotionally and physically trying times.

There were many factors that played a part in helping me cope

The Positives – Outside

• First and foremost the love and unending devotion and attention of my most amazing husband,

• My wonderful children, grandchildren, extended family and friends; and

• the expertise and support of my medical teams – the doctors, psychotherapists, physiotherapists, pharmacists – and specialists of just about every discipline

The Positives – Inside

Equally important are the personal strengths I have acquired over my lifetime – strengths which have helped me manage not only my health, but the life challenges I have encountered:

• knowing that I have survived struggles in the past – I am a survivor not a victim;

• my thirst for knowledge (knowledge equals power);

• my willingness to try anything that I believe might help me;

• my computer literacy;

• my love of writing

• my many creative pursuits/hobbies

• my inherent happy disposition, and

• my work as a social worker - which taught me that somehow people do eventually learn to cope with life’s vicissitudes – with dips in the road along the way; and

• my ability to see the humour in life’s more difficult situations

  
  

Any time I might see myself going back into a dark place all I have to do it look at this list to remind me of all the good in my life – both outside and inside