Electric Husband: An Introduction

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.

3 thoughts on “Electric Husband: An Introduction

  1. Hi, Minter,

    Today in church, a friend of mine passed me an article that you wrote for the “American Journal of Nursing”. My husband also has early onset Parkinson’s Disease. He was diagnosed 14 years ago and has finally decided to pursue Deep Brain Stimulation. The pain associated with the dyskinesias and dystonias has finally gotten to the point where he can no longer tolerate it. How long ago did your husband have the DBS? How much relief did he get from the surgery? What symptoms of Parkinson’s were not affected by the surgery? Did he have any adverse affects from the procedure?

    I found “After Dinner Talks” to be especially poignant as we now watch “Jeopardy” during dinner rather than have long discussions. At first Greg’s growing silence made me wonder what I had done wrong to upset him. Then I thought that he was just tired of repeating himself every time he spoke. The idea of needing to practice his speech never occurred to me. In the future, I will try to be more conscious of initiating conversation and giving him my undivided attention when he speaks rather than listening with one ear while I am doing chores. I needed to hear your message. Thank you.

  2. Dear Kathy – Thank you so so much for your email. It made my day. My blog about Parkinson’s is brand new, in fact I haven’t officially launched it yet, so receiving your email totally vindicated what I am doing. I knew there were other caregivers out there who would benefit from my story and I was right! Altogether the DBS was a success for my husband but it came with a price – his speech became even worse and so did his balance. I would be glad to talk with you more about it. Take care, Minter

  3. I read Poetry and Parkinson’s article in the Sunday Phila Inquirer. I just emailed my dghtr in NY to take a looksee at your wonderful peice. Her husband has Parkenson’s, for some time. married him this past Sept and he also is a poet. I’m sure she will be in touch with you. Thank you and all the b est to both of you guys. I’ll have to look for his book given to us befor they wed. . ………An old crritter trying to do the right thing….bb

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