Parkinson’s disease self-care tips include tracking, support: Study

A doctor holds a clipboard and gestures while speaking with a patient seated on an examination table.

Self-care is important for people with Parkinson’s disease, and patients should be armed with tools for tracking symptoms, keeping informed about the disease, and leaning on support from others.

That’s according to a study, “Balancing feeling ‘prepared’ without feeling ‘devoured’: A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson’s disease in Sweden,” published in Health Expectations.

The findings show that “self-care needs to be acknowledged and discussed more often in [Parkinson’s disease] and other complex conditions,” the researchers wrote.

“Assisting [people with Parkinson’s] in identifying valuable parameters and viable methods for self-tracking, taking a person-centred approach, is an example of how healthcare teams and patient organizations can help [people with Parkinson’s] find an individually-suited self-care routine,” they wrote.

Parkinson’s is a neurodegenerative disorder with symptoms that can affect all aspects of a person’s life. While doctors and other healthcare professionals can be useful resources, most patients aren’t getting medical advice on a day-by-day basis — and in between doctor appointments, patients are usually the main person in charge of managing their own care.

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Taking the patient’s point of view

Though there have been studies on Parkinson’s self-care, most have focused on the views of clinicians. Here, scientists in Sweden wanted to better understand how patients themselves relate to the idea of self-care for their disease.

The researchers conducted a focus group in which 14 people with Parkinson’s offered ideas about what Parkinson’s self-care meant to them. Then the scientists conducted two surveys collecting open-ended text responses. One survey, which was answered by 33 people, asked about habits for tracking Parkinson’s symptoms. The other survey asked about disease-specific knowledge; for that survey, the researchers only analyzed responses from 197 patients who indicated knowledge about Parkinson’s.

The researchers highlighted three overarching themes from all the responses. First, for patients, a major part of Parkinson’s self-care consists of day-to-day activities to help manage the disease, including maintaining a healthy diet, getting regular exercise, and taking medications as instructed.

Patients also frequently noted the importance of rigorously monitoring symptoms so that any problems can be quickly identified. For example, one patient reported that her symptoms worsened after switching from one medication brand to another because of pricing. “Thanks to my notes, I was able to go back in time and see that my deterioration coincided with the switch,” she said, noting that her symptoms improved once she switched to another brand.

Patients also said that keeping their own notes can help make conversations with providers easier. “Only I know how [Parkinson’s] feels for me,” one patient said. “[I] must be able to show [my tracking results] so medical staff understand even though they do not have Parkinson’s disease.”

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Be prepared, seek out resources

The second major theme the researchers highlighted was internal resources — that is, things patients themselves can do to feel in control. Patients stressed the importance of being well informed about Parkinson’s and maintaining a positive attitude where possible, including a mindset that allows them to “focus on what I can do — not what I can’t do.”

“The more you know about the disease you have, the more prepared you are for what may happen in the future,” one patient said.

But while patients said it’s important to be “prepared,” they noted that it’s easy to feel “devoured” by the enormity of Parkinson’s, stressing the importance of taking space where necessary and engaging in life beyond the boundaries of Parkinson’s. As one respondent put it, “I need to be normal, too.”

The third theme involved use of external resources, ranging from relying on support from family and friends to seeking out books and resources on the internet. Patients also said it’s crucial to talk to other people who also have Parkinson’s.

Disease tracking and education about Parkinson’s are important areas in which healthcare providers can help support patients’ self-care, the researchers said.

“Future self-care interventions should consider self-tracking and disease-specific knowledge as well as internal and external resources in their design and implementation,” they wrote, adding that “it is important to continue to explore these terms from the perspective of persons living with chronic conditions.”

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