Advocates make things happen

Advocates make things happen. I like to think I was born an advocate, or at the very least, that I learned the trade at my father’s knee. He always had (and still has at 80) “gems” to encourage my advocacy efforts, such as the universally applicable, “Don’t ask, don’t get.”

I was eight years old when my Dad gave me a $20 bill so I could buy the latest “Cherry Ames” book. The cashier at the local drug store handed me change for a $10 bill, insisting that was what I had given him. My Dad sent me back on my bike several times to try to make things right. Finally, with me in tears and in tow, he drove to the store and confronted the cashier himself. Let’s say justice was served, and I learned something I have never forgotten… standing up for what is right is not necessarily easy, but each of us can be a catalyst for change if we’re persistent and have people in our corner on whom we can depend.

Lest I forget this, sitting on my desk is an acrylic block encasing a strip of Linotype that spells out my maiden name. Long Island’s “Newsday” awarded me this when I was 14 years old and named Teen Irritant of the year. The unflattering sounding distinction referred to the name of a column featuring letters to the editor written by teens, and I was prolific.

Although moisture and the passing years have clouded my award and stolen its luster, as Parkinson’s disease has made me a little slower, my commitment to advocacy is unwavering. It continues to take the form of writing — web content, newsletters and brochures for PD groups, and letters to the editor.

No cause is more important to me personally than supporting the science necessary to bring about a cure for Parkinson’s. I want this not only for us, but for our children and grandchildren who may have a genetic predisposition to this disease.

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My husband says I’m a full-time PD advocate, and I’d have to agree. I didn’t wake up one morning and decide to do this. It evolved gradually as I worked on accepting my diagnosis and learning all I could about this disease that has me in its grip.

Advocacy is about championing a cause. It can take any focus you want, depending on your skills and interests. I have chosen to promote PD awareness and encourage patient participation in clinical trials by applying my art and computer skills, and my experience as a corporate trainer; and through my own participation in clinical trials.

I speak to students about what it's like to live with Parkinson's; and explain to fellow patients what it's like to participate in clinical trials and why they should do so. And I volunteer as a Senior Web Advisor for the Parkinson's Action Network (PAN). My hope is that my advocacy efforts will have a positive impact on the fight for a cure.

On a personal level, advocacy has expanded my horizons, and enabled me to meet some amazing people (e.g. Lonnie Ali), and make new friends. Sheryl and I met while volunteering with a group of patient advocates. We became fast friends, visiting each other's families, and supporting each other in our various projects.