My Unexpected Detour: Becoming a Parkinson's Expert & Patient Advocate the Hard Way

My Unexpected Detour: Becoming a Parkinson's Expert & Patient Advocate the Hard Way

I had to write this book. For years, when I led Parkinson’s disease (PD) support groups and consulted with families of loved ones who had PD, they asked me to teach them what I had learned after years of being a caregiver for my husband David who was diagnosed with PD in 2004. John David Autin (David), the love of my life and father of our incredible son Michael, inspired me to share what I have learned the long, hard way in becoming a Parkinson’s Expert and Patient Advocate. Even though he was constantly struggling daily with all the variations of symptoms, he encouraged me to teach others how to help someone just like him, living with PD, and their family caregivers how to deal with the ongoing challenges. From the moment he was diagnosed, I jumped in “face first” to learn all I could to help him and me, and Michael to understand what we were up against. I wasn’t a healthcare expert. For years I had been a visionary entrepreneur as an innovative jewelry designer and business consultant. I knew nothing about PD, except what I had heard listening to Michael J. Fox. How was I going to help David? What should I do next? What was the best way to learn about it? How were we going to live with it in our lives? These were all questions that needed answers. Over the following years, I got answers to all those questions, but not always the answers I hoped for. He always tries to find the silver lining in his challenges and still considers himself Parkinson’s defiant. During some of his most difficult years struggling for comfort from his PD symptoms, David wrote, and I helped him self-publish his book of amazing poetry, Birds Only Sing to Those Who Listen in 2014. My book is my way of teaching the world about not only how to live with the complex disease, Parkinson’s, but to teach caregivers helpful tips from a spouse caregiver. I have been there with David on this extremely difficult journey for more than 23 years (from the time we saw recognizable physical PD symptoms). Over the years I’ve helped hundreds of people with PD and their family caregivers as a volunteer and as a professional Patient Advocate consultant. My passion is teaching caregivers and families helpful tips I learned from living though the caregiving journey with David and Michael. By sharing my brutally honest story and tips from what I experienced as a caregiver for David, I hope this book will be helpful to those who are in the beginning of a caregiving journey, as well as those who are further along. I encourage all caregivers not to waste time worrying, but to enjoy life with your loves, family, and friends, and remember, as David says, "Laughter is the highway to healing."