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Hope for a More Dependable Day: One Patient's Story of Dyskinesia

Hope for a More Dependable Day: One Patient’s Story of Dyskinesia

“When I first started taking medication after my diagnosis, I was fine. To the point that I wanted to think I’d get over Parkinson’s,” shares Annette O’Brien, of Orlando, Florida. Almost 10 years later, the disease now exerts much more control over her day—especially through her dyskinesia, the debilitating, uncontrollable movements that are often a side effect of the gold-standard treatment for PD.

Annette says she wasn’t the first to notice her dyskinesia; others realized she was moving before she did. As the side effect became more apparent a few years ago, she says that she didn’t want to go places like she used to. She admits, “I’m embarrassed that I felt embarrassed, but I knew I looked funny.” The dyskinesia also causes her to drop things, and its exaggerated movements make her neck and shoulders tired. While she tries to manage her condition with medication, some aspects are out of her control—like stress.

A former school teacher, she loves being around children—especially her three grandchildren and extended family. But it can be difficult to keep up with their level of activity. She’s learned it helps her to take a “time out” in her room if she feels overwhelmed. “I can hear them laughing from my room,” she says. “Even if I can’t be with them in the moment, it makes me happy.”

Despite the challenges of dyskinesia—and Parkinson’s—Annette has a positive attitude and is doing all she can to maintain her quality of life. She recalls something Michael J. Fox once said, that at least when you’re dyskinetic, you know you’re going to make it across the room, even if you knock in to a few things along the way. She says that exercise has been especially helpful, and she’s open to trying new regimens. “I read that bike-riding was good if you had PD, so we found a three-wheel bicycle that’s perfect for me. It looks a bit strange, but it’s definitely improved my balance and gives me joy. It’s funny—I may have a hard time walking with PD, but once I manage to get myself on the bike, pedaling is no problem.”

Annette’s ongoing search to better manage her dyskinesia, and her bradykinesia (the slowing down and loss of voluntary movement), has led her to consider Deep Brain Stimulation (DBS) surgery as a potential treatment option. Just this week, she went to Shands at the University of Florida to see her neurologist, and underwent two days of testing to assess if she is a good candidate for the procedure. She says, “With all the tests, I felt like I was in school again. But it was obvious to me they had patients—and their best interests—in mind. I know that DBS won’t cure me, but I’m very hopeful that it could help me.”

When asked what a treatment for dyskinesia would mean to her, Annette replies, “I could have a more dependable day.” Together with her husband, Neill, she has two grown children living nearby, with children of their own. She loves spending time with her family and friends, but wishes that she could be more reliable. Recently celebrating their 45th high school reunion, Annette was on the planning committee. “It all turned out wonderfully,” she says, “but I had to have backups just in case it wasn’t a good day.”

She also recognizes the pathways that Parkinson’s has opened up for her. More recently, Annette started taking part in a local support group and outreach center. Because she’s always had a strong network of friends and family, she didn’t initially feel the need to widen her circle. But she values the connections she’s made in the Parkinson’s community, especially through her PD dance classes. “At first, you might think you’re alone with the disease,” she says. “But you come to realize how many people are touched by it—and how many more are working toward a cure.”

As she and Neill have become more engaged with The Michael J. Fox Foundation, her hope for better treatments and a cure has grown. Annette concludes, “If not for me, for my kids and my grandkids I believe we will find the answers we’re looking for.”

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