“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the old Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.” When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home. “He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.” Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects. “My husband didn’t like him,” Bernadette says of her …

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