When our lives are struck by neurological illness, sometimes it feels good to strike back. Advocacy gives a way for people with neurological diseases to be more than passive victims.
As my grandfather's personality and memory slowly eroded due to Alzheimer's disease, my family struggled to cope with the diagnosis. Eventually we found solace in advocacy. My family has always been very active in the outdoors, and so we arranged a fund-raising bicycle ride, The Ride to Remember, from our hometown of Boise, Idaho to where my grandfather lived in Portland, Oregon. Over 500 miles, we raised more than $30,000 for Alzheimer's research. My grandfather's misfortune became our motivation to make a difference.
Patient advocacy has many shapes and forms. Basically, advocacy means any activity that benefits a patient. Advocacy can come from a large, highly organized institution. Advocacy may take the form of a smaller non-profit organization. Advocacy can also be as simple as a patient being their own advocate and making sure they receive the best healthcare possible. However, many patients feel better shifting their focus away from their illness and towards engaging the world around them.
If you want to be more involved with advocacy, the good news is there's no shortage of ways to help. Do you have a skill that you enjoy? In addition to bicycling, I helped the Ride to Remember by designing the event's first website. You can become an advocate by volunteering at a local organization, by writing a congressman in support of research funding, by helping someone with advanced disease with housework, or by teaching others about neurological disorders. You can even make patient advocacy a career--hospitals and private organizations are hiring individuals to help people navigate through a confusing healthcare system in order to get the care they need.
To read more about advocacy, you can try the following article: An Overview of Patient Advocacy.
Has neurological disease driven you to make a difference in someone's life? Do you have stories about how to advocate for yourself or others? Do you have other ways of coping with the daily challenges of neurological disorders like Parkinson's disease or epilepsy? Share your ideas in the comments section--you may inspire others to join the cause.