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Living with Parkinson’s: Things Aren’t Always What They Seem

living-with-parkinsons-things-arent-always-what-they-seem

Living with Parkinson’s: Things Aren’t Always What They Seem

“This morning, I woke up to the breathtaking Grand Tetons outside my trailer window. Many would say my husband, Brady, and I are on the journey of a lifetime, having sold our house to buy an Airstream and travel our beautiful country. That we are brave. And I would agree. But the real “journey of a lifetime” and reasons for our bravery are not this trip. It’s the fact that Brady is living with early-onset Parkinson’s.”
– Laura Wright, Parkinson’s Care Partner

Laura Wright’s husband, Brady, has Parkinson’s. Recently she shared with us some of the joys and challenges they’ve discovered about living well with Parkinson’s.

How has life changed since Brady was diagnosed?

Brady was diagnosed in his 40s. He continued to work while we did our best to mimic our “normal” life. However, as his Parkinson’s progressed, carrying on as normal wasn’t possible.

Brady’s last year of work was difficult, and every day was becoming more difficult for both of us as well. Recently, we accepted that Brady needed to go on disability. As we speak, we’re in the midst of a cross-country trip as a way to lean into our new life and embrace it as a fresh start.

What’s it like to travel while managing the challenges of living with Parkinson’s?

While traveling is exciting, there are challenges along the way because Parkinson’s is the uninvited third wheel on our trip. Brady may wake up with his symptoms well managed. In other words, ON. Or he may be almost too full of energy, amped up and trying to do too much at once, which can cause stress. Then he may experience an OFF time when his symptoms reemerge, and he has a hard time moving.

These rhythms and patterns of ON and OFF times are unpredictable and influenced by a complex interplay of factors including stress, quality of sleep, meals, activity levels, medication and other things.

Some days, we can’t leave the trailer until mid-afternoon. Those are hard days because he usually feels rushed, and I feel like I’ve been kept waiting. As a care partner, I try to figure out how to keep these frustrations away from the boiling point. I wonder how I can help both of us do things differently. Oftentimes, it’s not easy.

LauraandBrady Flowers - Davis Phinney Foundation

Another challenge Brady faces is dyskinesia, which occurs during his ON time. These sudden, jerky and uncontrollable movements (different from Parkinson’s-related tremors) are a known side effect of using levodopa. His dyskinesia can also be more pronounced in stressful situations or when he’s tired.

Nine out of 10 people living with Parkinson’s will experience dyskinesia at some point. Brady began experiencing it about four years after his treatment started.

In those early days, I didn’t understand that Brady’s fidgeting and twitching movements—that I interpreted as disruptive, agitating and, to be honest, irritating—were dyskinesia. I would ask him to stop, sit still and just be calm, assuming it was just that easy.

When Brady’s doctor told me that his fidgeting was something he couldn’t control, my whole view changed. But old habits die hard, and sometimes I still find myself asking Brady to stop drumming his fingers on the table. The difference is that now I also give myself permission to leave the room if his energy is making me anxious. This doesn’t mean I love him any less. In fact, allowing some space and acknowledgment of my needs lets us love and accept each other even more.

What’s it like to watch the person you love most struggle with Parkinson’s?

It can be unsettling to see someone you care about experiencing dyskinesia and then showing other symptoms as OFF time kicks in. That’s why it helps to be upfront with each other and with other people when it does happen.

Recently, we visited friends for a few nights. The first night, Brady was animated and expressive but also dyskinetic. The second night he was more OFF and was quiet, reserved and not at all fidgety. Our friend noted that Brady seemed so much calmer on the second night, and she assumed this must have meant that Brady was feeling better. But Brady explained that he actually felt worse because his stillness was a symptom of being OFF. This drove home the point that it’s easy to misinterpret how he’s feeling. It’s a real gift to have friends who you can talk to about it and who truly want to understand what’s going on.

I know honest discussions about Parkinson’s help us stay connected as a couple and to our family and friends as well. Without explanation, others may misunderstand what they’re seeing, just like I did in the beginning.

When you see something you don’t understand, I urge you to start a conversation with your loved one and his/her doctor. In particular, asking the doctor about dyskinesia and OFF time can provide answers and possibly other treatment options. (We’re so grateful that Brady’s doctor helped us find a treatment that helps him manage both dyskinesia and OFF time, leading to less unpredictability throughout Brady’s day.)

What advice do you have for others who might be wading into similar waters?

I hope that just sharing our experience will help others. I know we’re still adjusting—not only to our smaller “home” but to our ever-evolving lives with Parkinson’s—but Brady and I try not to let constraints color our experience. Instead, we walk as far as we can and focus on the wildflowers, the little animals, the mountains, each other and the beauty we can see as we continue our journey.

This blog article was *sponsored by Adamas Pharmaceuticals, Inc. More information and resources about Parkinson’s disease dyskinesia and OFF time, including interviews with Brady and Laura, are available at DyskinesiaIsAJerk.com.

 

*While the generous support of our sponsors makes our educational programs possible, their donations do not influence Davis Phinney Foundation content or perspective.

Would You Like More Resources on Parkinson’s Care Partners?

We have a wide variety of articles and resources to help Parkinson’s care partners live well. You can find many of them here.

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