Things I love about our shared Parkinson’s journey

During our shared Parkinson’s journey, my husband, Eric, and I have experienced much frustration, anger, and heartache over the challenges that the disease imposes on our lives.

For my mental well-being, I meditate and practice mindful moments.

I recently did a guided meditation with one of my favorite authors and storytellers, Sarah Blondin. Throughout the meditation, “Reawaken Yourself To Love & Joy — 19 Minute Daily Insight,” Blondin names the small and large things she loves as a way of teaching how to reclaim joy.

After that meditation, I grabbed my journal, another tool in my self-care toolkit. I wanted to see if I could intentionally name the small and large things I love about our experience with Parkinson’s.

Here’s what I discovered.

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Reflecting on the parts of our journey I love

I love that Eric and I are closer than we’ve ever been in our nearly 30-year marriage, despite spending a third of our relationship living with a neurodegenerative disease that neither of us wanted or expected.

Jill and Eric Hammergren at Emerald Isle, North Carolina. (Courtesy of Jill Hammergren)

After a decade-long battle, I understand why Eric gets frustrated and exasperated with the debilitating disease that threatens to consume his mind and body. I get frustrated, too. But I also love being his cheerleader, encourager, and loving — though he might call it nagging — wife, who won’t let him give in or give up. With love and encouragement, he and we persist.

The disease is progressive, and more often, Eric’s muscles stiffen when he sits too long on a chair or the couch. Then I must help him up. I love that he puts his arms around my hips, which gives him leverage as I pull him upright, and we end in an embrace, a kiss, and without fail, we say, “I love you.”

I love to see Eric and his fellow fighters at Rock Steady Boxing (RSB) for Parkinson’s show up with resilience and work hard for themselves and each other.

While they box with determination to fight against the effects of Parkinson’s, I love that I have a tremendous tribe of care partners right next to me during those classes. I love that we’re quick to hug, laugh, and cry together and always support each other and our people with Parkinson’s.

I love the heart and dedication of our RSB coaches and assistant coaches who lead the fight for all of us.

In a world of ever-evolving symptoms, I love the normalcy we still share over sports and the need for us to test our knowledge with the nightly dose of “Jeopardy” on TV.

Another sign of disease progression is that Eric always goes to bed earlier than I do. I love to see the slight grin on his face and the playfulness in his eyes when I flirt with him each night in those intimate moments. I help him prepare the medication he must take every three hours and switch on the red light on his nightstand. I love what has become a nightly routine of me kissing him good night before I tuck him into bed so he can sleep.

I love it when Eric’s quick, dry wit and full, expressive smile or laughter break through the expressionless “Parkinson’s mask” he and others with this disease often wear — not by choice, but because they lack muscle control. I love it when those moments of joy aren’t lost amid his struggles with simple movements and tasks because of Parkinson’s.

I love that Eric’s sense of humor and comedic timing remain. He often uses a foldable walking stick to help guide his steps.

One day, out of the blue, he broke into one of our favorite scenes from Mel Brooks’ “Young Frankenstein,” where Dr. Frankenstein, portrayed by Gene Wilder, and his monster, played by Peter Boyle, perform Irving Berlin’s “Puttin’ On the Ritz.” Eric created an exaggerated, elongated, yet vacant expression and delivered a spot-on imitation of Boyle’s over-the-top vocal projection, sending us both into giggles.

We love recalling another hilarious event after dinner at a local restaurant. I slowed my pace on the narrow sidewalk on the way to the car when Eric struggled behind me with a gait-freezing moment. I listened for the metronome-like sound of his walking stick tapping the sidewalk. It helps him engage his dopamine-deprived mind and frozen feet to get in sync. I was infuriated when someone impatiently dashed past me. I thought it was rude to rush by a man with an obvious disability.

Imagine my surprise when I saw Eric running ahead with his stick in hand. He stopped at the end of the walkway and laughed at my bewildered expression. He shrugged, “It’s a weird disease. Sometimes I can run, but I can’t walk.”

I’m grateful this exploration helped me find clarity, awareness, and some positive things to revisit during tough times.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.