Many people with Parkinson’s see a neurologist just a few times a year. While those visits may be supplemented with appointments with other members of your care team, in general, there’s a lot of time for Parkinson's care autonomy in between.
Sara Riggare started experiencing Parkinson’s disease symptoms when she was just 13, and was diagnosed in her early thirties. Her op-ed in The Guardian explains how living with symptoms for so long has helped her hone a set of valuable self-care skills:
I visit my neurologist two times a year, for about 30 minutes. The rest of the year’s 8,765 hours, I spend in taking care of myself the best way I can.
Sara uses an activity tracker to measure the number of steps she takes each day, how much sleep she gets and the quality of her sleep. She says her “strongest weapon against Parkinson’s disease is self observation,” and has used that motto in professional research as well. As a doctoral student in health informatics at Karolinska Institute in Stockholm, she works with other people with Parkinson’s disease to develop tools and technology to help everyone with the disease manage symptoms better.
She’s also involved with patient advocacy groups that work to empower patients.
“We are convinced that the person with the biggest interest in their health, as well as the opportunity to do something about it, is oneself,” Sara writes. “And we want to work together with the healthcare system to achieve the best health we possibly can. After all, my health is my responsibility.”
Learn more about what the Foundation is doing to empower patients to become engaged in their own care.