My husband has had Parkinson’s disease for longer than I have known him. Diagnosed in 1997, at the age of forty-eight, he has what is known as “Early-onset” Parkinson’s. I met him just three years after his diagnosis. At the time, he was in the closet about his illness; you couldn’t tell anything was wrong with him. He was a world-renowned performance poet, performing two or three nights a week throughout New York City’s five boroughs. It has now been fourteen years since we met and things are quite different: his disease is no longer a secret and cannot be. He walks with a cane, walking poles or “Rollator,” has retired on disability, and has had Deep Brain Stimulation (”DBS”) surgery to plant electrodes in his brain in order to reduce the symptoms. He still performs his poetry but he has to practice now, reading for shorter periods of time and breathing in between lines. Sometimes I help him read, a husband and wife team reading in tandem, with Hal starting off and me finishing.
A writer friend of mine who has written about the effects of Polio on her father and family encouraged me to write about Hal’s illness, to document daily life in a journal. Doctors also encouraged me – from the perspective of keeping track of the illness’s progression. As a writer, this would come naturally, or so I thought. It took a while (and a writing fellowship to France) before I really started writing about it. I had spent most of my life writing, the desire to write coming just after the pleasures of learning to read. In writing about Hal’s Parkinson’s, I found solace, release, and comfort. The page has become a new kind of friend as I travel the hard journey an illness creates. This blog comes from these pages and I hope that they will help others who are living with disease or illness– as a patient, caregiver, friend or family member. Of course medical professionals may want to read my entries too, or those who are curious to learn more about Parkinson’s. I welcome all of you and thank you for your interest.