What follows is my advocacy story and why I became one.
When my husband was diagnosed with Parkinson’s disease in 2004, neither one of us knew very much about it. Our limited exposure to this insidious illness included snippets of information overheard from interviews by Michael J. Fox and Muhammad Ali or picked up from TV news stories or an occasional magazine article.
Faced with this unexpected and frightening threat, my husband was told to “take the medicine prescribed and come back in one year.” Stunned and at a loss where to turn or who to go for information or advice, we both thought the same thing, “NOW WHAT”?
I soon discovered that we weren’t the only ones. Each day, ordinary people just like us were facing futures suddenly, frighteningly different from any they had imagined, without a clue as to what they needed to do next.
Since that day, it has been my personal mission to learn as much as I can about this complex disease and to find ways to help my husband and other PD sufferers get the best healthcare outcomes possible and live life to the fullest.