The Parkinson’s Perspective Volume 43, Issue 4
Fourth Quarter, 2023
Serving OR and S. WA
Advocating for Yourself CONTRIBUTED BY NIA JONES, PROGRAM COORDINATOR Self-advocacy is an essential skill for anyone living with Parkinson’s disease. Simply put, self-advocacy is the ability to communicate your needs. While that may be an uncomplicated definition, it can be difficult to know where to start and how to build the skills to become confident in advocating for yourself. From navigating the complex healthcare system to confronting misconceptions and stigma, all while remembering to take your carbidopa/levodopa, living with Parkinson’s disease can feel like a constant battle. Assuming an active role in expressing your needs empowers you to take control of your health, enhances your quality of care, and promotes positive change for yourself and everyone in your community. Self-advocacy can be broken down into three main pieces: information, communication, and support. Being a proponent for yourself starts with understanding your needs. As
we mature, our needs change and grow, too. Your needs as a child differ from your needs as an adult, just as your needs differ as a person living with Parkinson’s disease from a person living without PD. So how do you identify your needs?
Learn your disease. It takes time to thoroughly understand PD but there are a lot of resources from reputable sources available to help. It is never too late to start learning about PD. Whether you are an auditory learner who would benefit from a lecture, or you learn best through reading, arming yourself with knowledge allows you to make informed decisions and equips you with the information to communicate your needs and concerns effectively. The New Parkinson’s Treatment Book, by J. Eric Ahlskog, PhD, MD, is a fantastic resource to help build knowledge about PD. Functioning like an encyclopedia, the book aims to educate people with Parkinson’s about all aspects of the disease, from diagnosis, to treatment, to
MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG
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symptoms and symptom management. Attending educational events hosted by Parkinson’s organizations are another way to learn about PD. Parkinson’s Resources of Oregon, Davis Phinney Foundation, Michael J Fox Foundation, and more, host online and in-person education events focused on empowering people with Parkinson’s through education, covering topics that respond directly to the current needs of the PD community. Connecting with a support group or peer mentor is a way to learn about PD from others navigating the disease. As opposed to reading a book or watching a webinar, support groups offer immediate discussion about topics important to the members of the group. Through conversation, you are introduced to new ideas and information about the tools others are using to manage their PD. While a support group is not a place for medical advice, it is a place to hear about what others are experiencing, what resources (Continued on page 6) FOURTH QUARTER, 2023 • 1
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