From Parkinson’s Caregiver to Parkinson’s Advocate

Sarah King is an Assistant State Director for the Parkinson’s Action Network and a former Project Manager at the Dana Alliance for Brain Initiatives. In honor of Parkinson’s Awareness Month, she shares her story of caregiving and advocacy. Sarah tweets about Parkinson’s advocacy and can be reached at skingPAN@gmail.com.

Shortly after my mom passed away I got a phone call from a woman I’d never met. She knew mom through her work with a statewide volunteer organization. Mom had been involved with the group for over a decade and had been a mentor to the younger woman, offering guidance, sharing expertise, and helping her join the organization’s board. I was in tears as she told me how grateful she was for mom’s willingness to share her time and knowledge, and what an inspiration she had been. “Yes,” I remember thinking, “that sounds just like mom.”

I like to think I may have inherited some of my mom’s generous spirit, her desire to help others, and her drive to make change happen. Mom battled Parkinson’s disease (PD) for the last four years of her life. After she died, I knew I wanted to work to improve care for those with PD, increase public understanding of the disease, and help find a cure. So, in honor of and inspired by my mother, I transitioned from Parkinson’s caregiver to advocate.

As a caregiver, I often felt powerless. When mom was in the hospital we felt completely at the mercy of the time-pressed staff. When insurance would no longer cover one of her prescriptions, there didn’t seem to be any recourse. As PD stole more and more of mom’s abilities, there was little we could do to help her regain them. After she passed away, I was grateful she was no longer suffering, but I thought about the estimated 1 million people in the United States still fighting the disease, and the spouses, parents, children, and siblings who love them. Advocating for others affected by Parkinson’s was a way to overcome that feeling of powerlessness.

What does it mean to be an advocate? An advocate works to improve quality of life for themselves and their fellow citizens. As a disease advocate, this means fighting for better care and resources for patients and families. It means educating oneself on current treatments and therapies and identifying the organizations at the forefront of the fight against the disease. It means campaigning for affordable, accessible care for those living with disease, and helping to shape the future of healthcare by educating policymakers on the issues affecting patients and the long-term value of funding medical research. It means fundraising for research that will lead to improved therapies and a cure, and empowering other patients and caregivers to become advocates.

How do you start? If you or someone you love is living with a neurological disease or disorder, you are already equipped with the most powerful advocacy tool there is: your personal story as a patient or caregiver, son or daughter, husband or wife. Find out if there is an organization related to your cause that trains advocates. The PD community is lucky to have Parkinson’s Action Network (PAN), which runs a very well organized grassroots program, providing all the tools one needs to become an effective advocate. The Alzheimer’s Association has a similar program. The right organization will make it easy to influence policy by providing the tools needed to reach out to your representatives in Congress. They will provide resources you can use to educate the public through your own activities, such as speaking at support groups or senior centers, submitting letters to the editor of your local paper, or organizing an educational display at your local library, and will help connect you to your fellow advocates. They may also organize forums and “Hill Days” in which advocates gather in Washington, DC and take meetings with members of Congress. PAN organizes such an event every two years.

To start out, you might consider becoming as an “e-advocate” by responding to calls-to-action to send emails about policy issues to your representatives—this could require only minutes of your time each month. Or, you might choose to focus all your efforts during the awareness week or month dedicated to your cause (April is Parkinson’s Awareness Month; a list of health-related observances appears below), or become a virtual advocate by building a network through Facebook or Twitter or by blogging. There are so many ways to get involved, and while major changes at the national level can be slow in coming, you will begin to see the impact of your work in your community and throughout your network immediately.

Unity Walk 2010Sarah and her husband at the Parkinson's Unity Walk in Central Park.

If you want to see change happen, I encourage you to get involved. If I’ve learned anything in my journey to advocacy, it’s that there is strength in numbers. Help make a difference in the lives of those battling illness by adding your voice and your story.

Here are some resources:
Parkinson’s Action Network: Your Voice
Parkinson’s Disease Foundation: PD Advocates in Research & Parkinson’s Awareness Month resources
Alzheimer’s Association advocacy
AARP Advocates
National Council on Aging: Public Policy and Action
National Health Information Center health observances

–Sarah King

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