The Power of Your Personal Story

Over eighteen years ago, I attended my first Parkinson’s Action Network (PAN) forum in Washington, DC and I became an advocate for Parkinson’s disease (PD). The PAN forum brought together a huge range of people, in and outside, of the Parkinson’s community - people with Parkinson’s, caregivers, their families, national and regional Parkinson’s organizations, scientists, doctors and allied health professionals to advocate for PD issues. The most important thing I learned at the PAN forum was the importance of telling my personal story.

Your story is your power

When I first heard that I needed to share my personal story, I was highly skeptical. Who wants to know what it is like to watch your loved one have dyskinesias (uncontrollable movement due to too much medication in their blood stream) and be unable to eat or drink?

As care partners/caregivers we must share the cold, hard truth about caring for someone who has a chronic illness and how that impacts us! The representatives and staffers DO listen to your daily struggles and challenges. Only through telling our caregiver stories, can these influential individuals realize the challenges of caring for someone with a chronic condition like Parkinson’s.

Senators and Representatives gasp when they hear the stories of how hard it is to find someone to care for their loved one.  Staffers listen when caregivers talk about their caregiver stress-related health issues. Tissues are passed when a caregiver talks about their last days with their loved one.

Our personal stories are not only shared on Capitol Hill in Washington D.C. but at Town Hall meetings, coffee shops, community events and regional congressional offices. Share your stories with neighbors, friends, community officials, local and state legislators, newspapers, television stations, and even with strangers in elevators! Everyone needs to know--even for a moment--what it was like to care for someone with Parkinson’s.

Your right to share your story

I always believed that most citizens understood that they can reach out to their member of Congress to express their opinion about any issue. Most people don’t even think of sharing their stories/needs/concerns with their member of Congress. Our Representatives and Senators work for us and their job is to listen to our constituent voices about issues affecting our lives. Staffers employed by your representative are working for you, too!

Here are just a few tips that I learned to help you tell your story:

• Always state your full name, full address or at least the city where you live, if you are a veteran or business owner, that you care for someone with Parkinson’s or your connection to Parkinson’s. Do this verbally, in voice mail messages, via email, or in written correspondence.
• Share how long you have been a part of the Parkinson’s community.
• Give at least one example of how Parkinson’s affects your life. Be specific about the challenges and hurdles that you have as a caregiver!
• Ask for support or help with a Parkinson’s issue that affects your life. It is always helpful to have an ask. No request is too large or too small.
• Always thank your representative for their time. Either verbally, via phone, email or by a hand written note. It helps them to remember meeting you and it’s just a nice thing to do!

Always Be an Advocate

Being a part of PAN taught me the importance of always being an advocate – no matter what the situation. I use my advocate skills at doctor appointments, in hospitals, when I speak at Parkinson’s events, and more. Share your story with everyone in your community.  Everyone needs to know how caring for someone with Parkinson’s affects your life, your loved one’s life and your family!