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.
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 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 are available in the community, and how people have successfully advocated for themselves.
With an understanding of PD, the next step to advocating for yourself is vocalizing your needs. With most people seeing a Movement Disorder Specialist or neurologist just twice a year, arriving to appointments prepared is critical. Keeping an ongoing list of questions and concerns to share with your doctor helps keep the conversation on track and ensures that topics that matter to you are being heard and addressed. Don’t hesitate to reach out to your doctor via the online portal between visits. Speak up if something is bothering you!
Beyond communicating questions and concerns with medical professionals, part of promoting your needs as an essential component of your medical care is communicating your goals. Setting a goal that is meaningful to you provides a target to work toward with your care team, keeps care patient-focused, and helps you stay actively engaged. Goal setting can start by saying what you value and develop into a conversation about what everyone can do to help you maintain that.
Communication is a two-way street. While it may be challenging to change providers, it is ultimately beneficial to work with a team that you feel comfortable communicating with. You know your body, your symptoms, experiences, and medical history better than anyone else. Finding care providers that respect your lived experience and react to your needs results in better quality of life and care.
Advocating for yourself is hard work. Surrounding yourself with people who are your champion can help lessen the pressure of being the only one speaking up for you. Helping educate family members, friends, and professionals, about your experience with PD, creates a community of care and compassion. We cannot always easily speak for ourselves, but if there are people close to you who understand your needs, they can help amplify your message.
Be kind to yourself as you navigate life with Parkinson’s. No matter where you are in your journey, Parkinson’s disrupted your life and forced you to manage a whole other aspect of your health. It can take time to learn what your needs are, how to communicate, and identify a support team, but you can do it. What you have to say matters! It can and should be heard.