Worry goes hand in hand with life as a Parkinson’s caregiver

There’s a small white church near the entrance to my old neighborhood. I used to drive by it daily. Outside the church was a large sign where meaningful quotes were posted. Over the 20 years I lived in that home, I noted a few that resonated with me. “Worry is interest paid before it’s due” was my favorite.

Being an expert worrier is something that I’ve slowly mastered over the past 27 years. I’m reasonably sure it started after my first child entered the world in 1996. Before becoming a parent, I was a fairly relaxed person most of the time.

But no amount of experience, even parenting, can prepare you for the intense worry you feel as a caregiver. There’s the constant feeling that something terrible will happen at any moment. In fact, the unpredictability of a disease like Parkinson’s can make every minute feel like a bomb might go off, but you have no idea when or where. At times, it’s like walking through a minefield.

Adding to the difficulty of worrying is acting. Yes, I did say acting. In addition to trying not to worry, I try to pretend everything is just peachy keen. I do this act to convince myself everything is all right, to make life feel as normal as possible for my husband and our children.

Recommended Reading

November 15, 2019 Columns by Dr. C

Don’t Worry, Be Happy: Parkinson’s and the Limits of Positive Thinking

My reasons for fretting

Arman, my husband, was diagnosed with early-onset Parkinson’s disease 15 years ago at age 38. Our most significant concern is falling, which has evolved and become more frequent as the disease has progressed.

Soon after his diagnosis, Arman developed severe dyskinesia, or uncontrolled movements, since he’s sensitive to his Parkinson’s medication. He walked as if he were a soldier or a Rockette, kicking his right leg high into the air with every step he took. And that right leg was in constant motion when he was seated, flailing about uncontrollably.

Retropulsion, or the feeling of losing balance by leaning backward, became another big complication. Because of his inability to control that leg, his balance was unsteady and unpredictable, resulting in that main worry of ours: falling.

After several years and a few nearly debilitating falls, we finally made the decision that Arman needed deep brain stimulation surgery. We needed to do something that would decrease the amount of oral medication and control that leg, and we hoped that the surgery was our answer.

As a result, the dyskinesia went away, which was a true gift. But the retropulsion was ever present and the unpredictable falls continued, along with my feelings of intense stress and constant worrying.

My uneasiness is magnified when we’re not home. The unknown dangers of public places make me feel an unnerving sense of discomfort and concern. Will there be a crowd? How much walking will be required? Will there be a safe place for Arman to stand or sit if needed? Are there stairs, and is there a railing? Is there anything else to worry about that I am not already worrying about? And so on.

How I aim for control

I remind myself of the church sign’s quote as I begin to feel my anxiety and stress levels rise. When I think about it, worry truly is interest paid before it’s due. As suggested in earlier columns and as my go-to solution for my kids when they’re stressed, I use deep breathing to switch my mindset and fight back against the worry monster. I proactively remind myself that worrying won’t improve anything or get rid of Parkinson’s, but it can take a toll on my mental health.

We moved almost two years ago, and I rarely pass by that little white church anymore. But I do think of it often when I remember the quote. It’s funny how something so simple as a few words on a sign can make such a significant impact.

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