She used to pride herself on being Ms. Fix It. Today, because of her tremors, her spouse has to wield the drill. He used to crush opponents on the court—now he’s too tired to finish a game. Friends once knew her as the life of the party, but her increasingly stiff expressions have made communicating a chore. When Parkinson’s—an incurable brain disease affecting an estimated 7 to 10 million people worldwide—affects physical movement, it also exacts a social toll. Sufferers drop activities, relinquish long-held roles to their spouses, and can suffer from depression.
And yet much of the intervention for Parkinson’s is focused on the physical symptoms, says Sue Berger, a clinical associate professor of occupational therapy at Boston University’s Sargent College, who is studying people with Parkinson’s and their spouses to learn how the disease affects social participation and relationships, and how couples cope. “One of my hopes is that by gathering all of the strategies that people at different stages of Parkinson’s use to maintain their social activities, we can develop a toolbox for clinicians, to help clients brainstorm what is going to work best for them,” she says.
This research, which Berger is conducting with colleagues at Tufts University, is part of a five-year project run by former Sargent faculty member Linda Tickle-Degnen on the impact of Parkinson’s. The project is funded by a grant of more than $2 million from the National Institute of Nursing Research.
Berger is analyzing data from interviews with people with Parkinson’s and their care partners (often spouses), mostly from greater Boston; the study will later evaluate how Parkinson’s impacts social participation over time. Her analysis of early data has reinforced the idea that clinicians should emphasize “the importance of getting out and staying socially connected for health and well-being.” People who can no longer engage in their favorite pursuits are at risk of becoming isolated, says Berger.
“Clinicians should emphasize the importance of getting out and staying socially connected for health and well-being.”
— Sue Berger
Clinicians can assess the activities that people with Parkinson’s engage in with the help of a tool used in the Tufts study—a set of cards depicting a range of pastimes, from cooking to swimming, that patients sort into categories, such as “I do it now” and “I do it less than I did six months ago.” Clinicians can then offer advice—replacing activities that are too demanding with easier ones that still offer social interaction, for example—and help patients plan activities for times when they are most energetic.
Berger hopes the study will reveal whether Parkinson’s social impact varies with age, gender, and the stage of the disease. With that information, she says, clinicians will be better equipped to tell patients and their care partners, “This is what’s been working for people. It might work for you.”
A version of this article was originally published in Inside Sargent.