Parkinson’s Scorched Earth – a Revisit

When people hear about the bad side of love, they think abuse or unrequited love. Parkinson’s scorched earth policy taught me that love has other dark sides.

I live in a forest. You’ll find Mylar balloon trees everywhere in my house. Butterflies, Disney characters, Valentine hearts, and glittering stars. At one time, Mike and I used to waltz under the fruits that grew on them. When we weren’t dancing, he worked outside in his tomato garden. Other times we’d browse brochures with which to plan amazing vacations in Florida, Nevada, Aruba, and on two occasions, Italy. At a party, he’d regale people with tales of his years in the Navy during the Vietnam War. For his living, he counseled unemployed workers looking for compensation, and the office became his second family. Time spent around other people enabled him to escape the reality of Viet Cong capturing people and Parkinson’s disease invading his body.

“Scorched earth” comes from the military strategy the US used to fight the Viet Cong. This strategy involved the destruction of crops, homes, and resources vital to the enemy. I can’t remember when Mike’s war with Parkinson’s began, but his disease whispered “scorched earth,” with gardening, driving, and activities of daily living becoming the casualties. The process might have started with tremors and loss of energy, but it ended with frequent falls, necessitating a wheelchair and admission to a nursing home. It’s not just about my inability to lift. Parkinson’s stiffens the body so that it becomes a dead weight. The docs came up with magic pills to contain the symptoms, but Mike’s body couldn’t tolerate their side effects.

I rate my visits with Mike into three classes: good, semi-good, and bad. Last two visits were good ones. Mike and I chatted as if he were healthy. He’ll handle a spoon and fork without help. His voice came through clear. Sometimes he might ask me about my balloons, and last time out, he encouraged me to buy a generator because of our harsh winter. On semi-good days, the alertness is there, but he’ll have trouble opening his eyes. He’s not able to answer, and when he does, people can’t understand him. On bad days, the dementia comes out in full bloom with hallucinations. On those days, he’s not allowed to be alone in his room because he tries to get up, and falls. What’s more, his personality changes have alienated him from friends and relatives. I think a lot of it is because Parkinson’s hereditary, and some relatives fear they might get it, too.

Thankfully, my family adopted him and visit. Bingo, movies, and other activities keep Mike engaged, and for a few moments he can forget his troubles. Sometimes I bring balloons for him and other residents. The staff has come to know me as “Balloon Lady.” When Mike embraces and hugs me, I know I’m in for a great visit. Sometimes though, the good visits can be tough because then I realize what we lost. Parkinson’s can’t destroy his spirit and his smile has endeared him to the aides and nurses. I’m hoping that a research scientist is reading this blog and works harder at coming up with effective treatment.

I’ve wish to thank my family and buddies who’ve supported me with Mike’s illness. My writing projects continue, and in my next book, I might introduce a character with Parkinson’s. I’m taking it one day at a time.

Barbara will be awarding an eBooks to a randomly drawn commenter.

1st prize Night to Dawn 25 PDF

2nd prize Steel Rose PDF

3rd prize Close Liaisons PDF

Mike Custer is husband of fiction writer Barbara Custer.


Scorched Earth Warfare

My home was a forest. Balloon trees grew in every room. Butterflies, Disney characters, flowers, and glittering stars. Before Parkinson’s disease consigned Mike to a nursing home, we danced to classical music under the Mylar fruit that blossomed on those trees. When we weren’t dancing, he worked outside in his tomato garden or with our development’s grounds beautification group. He served in the Viet Nam war on the USS Wasp. His deep throaty laugh concealed his secret fears about the Viet Cong capturing him. His musical voice rang through the church during choir practice until his right hand began to shake.

About fifteen years ago, Mike’s war with Parkinson’s began, and he became a prisoner of war. When he received his diagnosis in 1996, his neurologist Dr. Miller assured us that medicine would control the symptoms. He called it “tremor-predominant Parkinson’s,” because Mike’s most terrifying symptom was tremor. Later on, I found out about the disease’s scorched earth strategy.

There were six classes of medicines to fight this beast. The ones Mike had to take caused agitation and mood swings. Tremor notwithstanding, he continued his day job and worked in his garden. The tremor accompanied him on our yearly journeys to the islands. The symptom spread to both sides, but we continued hoping that a magic treatment would come along and restore his life.

Our dream seemed to come true in 2003 when a neurosurgeon performed deep brain stimulation. He implanted rods in Mike’s brain, and in his chest, pacemakers called impulse generators. These generators caused the rods to release dopamine into key areas of his brain to stave off the motor symptoms. The shaking stopped, but his voice softened, and he began to splutter every time he drank his coffee. At work, his clients thought he was drunk. Because of his worsening fatigue, Mike struggled to keep his eyes open. Rather than lose his benefits, he retired on disability. That was the first time I heard the disease whisper “scorched earth.”

By 2005, his worsening cough raised concerns about aspiration, so I began to mix thickening powder into all his liquids. The memory impairment came next, causing him to miss traffic lights. At the doctor’s orders, I took away his car keys. The grounds beautification group he belonged to asked him to resign, citing “personality changes,” which came with Parkinson’s destruction. Each morning I had to list everything he needed to do before I headed out to work. We waded through the health insurance quagmire in between 2007 and 2009. Amid the balloons lay calculators, spreadsheets, exercise programs, weights, and other paraphernalia needed for his care. Worst was giving up his job and driver’s license. Even now, when I visit him, tears roll down his face when he talks about not being able to work or drive.

Through it all, he continued to garden. Raking and planting limbered his muscles, but he started returning from his excursions with scratches and bruises. I learned that his worsening balance caused occasional falls. That and his judgment lapses necessitated hiring a caregiver during the day. Gardening had become another casualty of Parkinson’s destruction. By 2009, the doctor’s label graduated from “mild memory impairment” to “Parkinson’s dementia.”

Now I worked 12-hour workdays; eight at my day job and four more at night providing care. He kept walking albeit with a caregiver’s help. Instead of napalm, Parkinson’s had gotten him. His military service entitled him to benefits; my sister and I arranged his admission to the Veterans’ nursing home in 2010.

The nursing home was a godsend. Bingo, movies, and baseball games keep him engaged, and for a few moments, he forgets about his poverty of visitors, another byproduct of his personality changes. During visits, he’ll ask me about work or about my balloon collection, but our dancing stopped. He still works with plants from a wheelchair. During the first year we laughed and cut up at the home’s holiday picnics. Since then, though, his voice has grown softer, and it’s hard to understand what he’s saying. He can’t walk any more, and his wheelchair dependence is permanent, for the doctors couldn’t stop Parkinson’s scorched earth strategy.

My hope is that some research scientist will read this blog, realize how devastating Parkinson’s Disease can be, and perhaps work harder at developing more effective treatment.

I still continue with my day job and writing projects. I’ve been blessed with a loving family and friends in the writing community. My next book will feature a protagonist who’s fighting rheumatoid arthritis, another disease that burns the earth. She must slay monsters to stay alive. She won’t know how strong she is until necessity demands it.

When I wrote the dedication for one of my books, I called Mike a survivor in his own right. Because he is. Parkinson’s may have scorched his soil, but it has not destroyed his spirit.

Barbara Custer, writer of horror fiction, learned true horror through Parkinson's Scorched Earth Warfare.

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