Practicing Parkinson’s Self-Advocacy

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This month, we’re discussing the many ways people can be Parkinson’s advocates. For many people living with Parkinson’s, their first experience with Parkinson’s advocacy comes in the form of self-advocacy. You are practicing self-advocacy when you track and share symptoms with your doctor, attend educational webinars, read about new therapy options, or seek additional advice or a second opinion.  

As defined by Understood, Self-advocacy has three key elements:    

  • Understanding your needs  
  • Knowing what kind of support might help  
  • Communicating these needs to others  

For someone living with Parkinson’s, understanding your needs will likely require you, your care partner, or another advocate to participate in education through reading, attending webinars or other educational events, and/or speaking with a mentor. Knowing what kind of support will help you requires staying up-to-date about available medications and therapies, asking for ideas and recommendations from a well-informed Parkinson’s peer or mentor, or discussing your symptoms with trusted care team members.  

When it comes to communicating these needs to others, people living with Parkinson’s often report challenges due to infrequent contact with their movement disorder specialist (MDS), short appointments with their doctor(s), issues with speech related to their Parkinson’s, and more. Check out this blog post for ideas on maximizing your time with your doctor and consider using something like our Every Victory Counts® worksheets to help you prepare your thoughts and lead the conversation.  

It’s important to acknowledge that self-advocacy may not come naturally or easily for everyone, especially if you have personally had negative experiences in the past or are part of a community with a history of trauma contributing to a lack of trust in health care. And some people, especially women, people of color, people who speak languages other than English, etc., may have to employ self-advocacy more intentionally to overcome implicit bias, which has been shown to result in delayed diagnosis and other healthcare disparities.   

Effective advocacy is not a one-way street. If you are practicing self-advocacy and are not receiving improved understanding, care, and communication from a member of your care team, it may be time to find a new provider, employ a health navigator or other advocate to amplify your voice, or take action through other systems or policy to create change.   

While self-advocacy is not the only effective form of advocacy for changing how people live well with Parkinson’s, it plays a central role in creating a healthy Parkinson’s community. When people living with Parkinson’s practice self-advocacy, they are more likely to receive superior care and feel more in charge of their lives. They also contribute to the greater mission of building healthier Parkinson’s communities for everyone.   

Throughout the rest of the month, we’ll cover other forms of advocacy, including advocating for others, community organizing, and policy advocacy. Come back each week for a new post on this topic or sign up for the Healthy Parkinson’s Communities™ newsletter to follow this informative series! 

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