"It's an unknown unknown," Amie Hiller, M.D., says. She's a neurologist at OHSU's Parkinson Center and Movement Disorders Program, and she's talking about how the impact of Parkinson's disease on women might be different from the disease's impact on men.
Parkinson's disease is a neurological disorder that affects the nervous system. It's a chronic disease that gets worse over time, and there is no cure. Parkinson's disease can cause tremors, slowness, stiffness, and balance problems. In the advanced stages, it can impact cognitive function.
Most people diagnosed with Parkinson's disease are over the age of 60, and as many as one million people in the United States have the disease. The disease is more common in men, but scientists don't yet understand why.
As Dr. Hiller notes, this isn't the only mystery about Parkinson's disease, especially when it comes to women.
Outcomes may be worse for women
"Parkinson's disease research has focused more on men, and we treat women the same way we treat men," says Dr. Hiller. "We don't know if the disease might behave differently in women."
It's possible that women are underdiagnosed due to symptoms presenting differently, or that the best treatment for women is different than the best treatment for men. Dr. Hiller is part of a team putting together a "Women and PD: TALK" forum at OHSU to tackle these questions.
Women and Parkinson's disease forum
Women and PD: Teams to Advance Learning and Knowledge (TALK) is a series of regional forums taking place across the United States. Led by the Parkinson's Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI), the goal of the effort is to address gender disparities and develop new recommendations to improve outcomes for women with Parkinson's disease.
"Each forum will bring stakeholders together to discuss what's known about women and Parkinson's disease now and what's unknown," says Dr. Hiller. "We want to discuss where future research should go."
Research leads to better care
At OHSU, our care is informed by research, and new discoveries are constantly improving our quality of care. The Parkinson Center and Movement Disorders Program is no exception. In addition to physicians and surgeons, the program features evidence-based wraparound care.
"[We have] physical therapists, occupational therapists, speech therapists, a social worker, and a nurse coordinator focused on patient and caregiver education," says Dr. Hiller.
OHSU is involved in researching new medications, exercise programs, and new technologies to help persons with Parkinson's live better lives. This commitment to evidence-based care is what led OHSU to host the Women and PD: TALK forum.
If your loved one has Parkinson's
The Parkinson Center and Movement Disorder Program doesn't just care for patients – it also supports their caregivers, most of whom are women.
"Take care of your own health, too," Dr. Hiller advises. "We host sessions for newly diagnosed patients and their caregivers, and our social worker can help find services."
Parkinson's disease support groups, many coordinated by Parkinson's Resources of Oregon, can be a great resource for caregivers and patients.
The unknowns are many, and that's why OHSU's focus on research is so important. Forums like Women and PD: TALK lead to new ideas and new treatments.
"We'll discuss what we know, and what we don't, and determine our focus moving forward," says Dr. Hiller. You can be sure that better care for women with Parkinson's disease will result.