When my husband was diagnosed with Parkinson’s disease in 2000 and it was clear that I would be his major caregiver, I was overwhelmed with emotions. I was scared, I was sad, and I felt guilty that I was angry—at him, at the world, at God. Most of all, I felt alone. Not even my closest friends could begin to understand what I was going through. Books on caregiving provided practical advice on the nuts and bolts, but I needed emotional support from people who knew what I was feeling, and I needed it ASAP.
In an effort to maintain my sanity and sense of purpose in the face of my husband’s Parkinson’s, I began writing about how I felt. Soon I began talking with other caregivers, sharing fear, anger, hope, and even happiness with them, and recording their experiences and wisdom. I published their stories in a book, The Light in the Middle of the Tunnel.
My second book Stuck With It, Not In It: Redefining Life with Parkinson’s Disease, is a collection of stories – stories from people with Parkinson’s disease (PD), family members of people living with the illness, volunteers for Parkinson’s-related organizations, and professionals specializing in PD. Each story is personal and has a message.
The stories tell how people faced the disease, stared it down and found new ways of going forward. They refocused and redefined their purpose in life. They learned lessons that they want to share with others – anyone who lives with Parkinson’s or wants to understand what life is like for people dealing with a chronic disease.