Parkinson’s Never Stops

Parkinson’s causes irreversible change and is a source of our greatest fears. Andy and I, after 18 years, have been able to also allow it to be a source of joy. Just like parenthood, the joy comes from the ways a person lives positively and courageously with their condition.

Being diagnosed with an incurable disease doesn’t mean your life is now on a downhill trend forevermore. I think a lot of us suppose this to be our fate but my experience has shown me that it is not true.

We’ve learned so much living with this disease for 18 years now. It can take a long time to gain a clear perspective that seems elusive at the beginning of any major life change.

I remember still being a child when I went through puberty. I was overwhelmed with the idea that these changes were permanent. As the oldest of four, I truly missed my more gender neutral body that was free of a monthly agony and I didn’t like that I was different from my siblings in this way. In time, of course, that agony became another beloved part of my life that allowed me to be the woman and mother I love being today.

After our first child was born, Andy and I had very little sleep for what seemed to go on forever. Every new parent goes through this- but in being persistent eventually those babies DO sleep and a new well rested rhythm occurs.

What doesn’t ever happen is a resuming of a life without being a parent. Parenthood goes on forever.

My oldest son turns 40 this year and both Andy and I continue to be dedicated parents to him and to each of our 3 kids. Being parents is a source of our greatest joys and also our greatest fears and has been for 40 years.

Parkinson’s goes on forever too.

Parkinson’s causes irreversible change and is a source of our greatest fears. Andy and I, after 18 years, have been able to also allow it to be a source of joy. Just like parenthood, the joy comes from the ways a person lives positively and courageously with their condition.

I advocate for our world, culture and society to be more accepting of all people, including those living with illness and disability.

I advocate for our world to acknowledge the joy created in the lives of those living with incurable disease and every other hard life condition.

Parkinson’s never stops, but neither does the joy, creativity, connection to a higher power, blessings and love.

Let’s not bury the good stuff in the shock of something being hard.

When a new condition is going to last a long time, it’s counterproductive for yourself to assume only the worst- and it’s only ever true if you believe that.

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2 thoughts on “Parkinson’s Never Stops

  1. Thank you for this re-framing, what a wonderful perspective. Big hug for your continued healing. The Garden Room entry really made my heart soar. Love, Sarah

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