Skip to main content

Dealing with Dyskinesia as Best You Can: One Couple’s Story

Dealing with Dyskinesia as Best You Can: One Couple’s Story

Since her Parkinson’s diagnosis in 2005, Nancy Kaminsky and her husband, Rich, have been “putting one foot in front of the other,” she says. But things changed within the past year, when she began experiencing dyskinesia, the debilitating, uncontrollable movements that are a common side effect of the gold-standard treatment for PD. “Now,” she says, “it’s difficult to feel like you’re moving forward.”

Residents of Miami, Florida, Nancy and Rich have tried to manage this troubling side effect by working with her doctor to find the optimal dosage of levodopa-carbidopa. If she stays under a certain threshold, she can more effectively stave off the dyskinesia. But that also limits her relief from the equally debilitating motor symptoms of Parkinson’s. As with many patients, Nancy has turned to exercise, which has been helpful. With her ramped up exercise regimen, she’s even noticed she can better tolerate the lower dosage of levodopa-carbidopa.

While she and Rich maintain a positive outlook—and a good sense of humor—Nancy admits her dyskinesia is both frustrating and embarrassing. “You feel like you’re not in control,” she says. They recently attended a concert with some friends when her dyskinesia began, which is often worse at night. “It’s so unpredictable—you just never know when it will start. Nonetheless, you deal with it as best you can.”

When asked what a treatment for dyskinesia would mean for her, Nancy replies: “The ability to go back in time—before this started.” Rich adds, “She could take the dosage she needed to deal with her symptoms. We wouldn’t have to worry, ‘What next?’ when the current dosage of meds no longer worked.”

While accepting of their reality, they continue to travel to see their two children—and first grandchild now—in Portland, Oregon, and Chicago, Illinois. Nancy is actively involved in their church, taking part in Bible study and volunteering as much as she can. She says, “My faith helps me through all of this and gives me such comfort, every step of the way.” She also credits her husband, noting that she “couldn’t imagine life without his constant love and attention. He is just wonderful.”

They’ve both enjoyed their engagement with The Michael J. Fox Foundation, which Rebecca Bennett, a childhood friend of their daughter’s, inspired. Several years ago, she ran in the New York City marathon as a member of Team Fox—and to honor Nancy. When they learned Rebecca was running, Nancy and Rich stepped up to support her. They say, “She helped us realize we’d been so focused on the disease in our own lives that we weren’t doing our part to help find a cure. Now we are, and it’s been terrific for us.”

Nancy’s father also had Parkinson’s, and passed away in 1995. “Then,” she says, “I’d hoped we’d have a cure by the time it might affect me.” While the search for answers continues, they value MJFF’s out-of-the-box approach to treat—and ultimately cure—the disease. Rich calls the Foundation “the venture capitalists of PD research.” “When you take on such high risk,” he says, “the likelihood of failure is also high. But if it pays off, the rewards could be truly life-changing.” That’s where the Kaminskys are placing their bets.

We use cookies to ensure that you get the best experience. By continuing to use this website, you indicate that you have read our Terms of Service and Privacy Policy.