Parkinson’s Scorched Earth: The Conclusion

Mike was living a real life horror tale with his disease.

You grab the good days when you can.

The conclusion happened January 29th at about 2:00 p.m. The scorched earth warfare waged by Parkinson’s and dementia against Mike prohibited his ability to swallow, and that was when he died. I should have seen it coming; he’d been losing weight and getting frequent infections. My Mylar balloons tried to warn me. Every time I browsed Amazon to order him fresh supplies, the balloons stayed my hand. “Wait,” they advised me quietly. “He’s not going to need those. Save your money.”

Speaking of balloons, it was Mike who introduced me to them. He brought me some when we got engaged, and after his hospital stay in 1996, he thanked me for his care with several Mylar balloon bouquets. He loved my cheesecake, and I told myself that as long as this continued, no worries. Denial can be a comforting place.

He often regaled people with tales of his years in the Navy during the Vietnam War. Later on, he added that the Navy gave him the happiest years of his life, and now I can see why. 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 don’t recall exactly when Michel’s war with Parkinson’s disease got ugly, but I know that dementia had imprisoned his talents. It whispered “scorched earth,” with gardening, driving, and activities of daily living becoming the first casualties. His frequent falls echoed “scorched earth,” necessitating admission to the Veterans home. The ability to swallow became dementia’s final target; yes, dementia can affect swallowing in its late stages. The patient’s cognitive function worsens until finally, his brain forgets how to swallow and sustain life. After his admission to the home, I learned that deep brain stimulation, when done in the subthalamic nucleus where Mike had it done can cause cognitive changes, including dementia.

I can sum up Michael’s fight with Parkinson’s by using an analogy about life. When I was ten, my mom sent me to a summer camp for three weeks. Other kids spent the summer; some stayed a week.  Some preferred sports; others leaned toward arts and crafts. One kid remained a loner and avoided most activities.

In many ways, life is like camp. God drops us off to “stay” for a while; some of us will remain here longer than others. Some people become writers or artists. Others go for medicine or law. Mike came to the camp of life with many talents, but as the years passed, he reminded me of the little girl who didn’t fit in.

His problems became apparent when his doctor attempted different medicines that resulted in intolerable side effects. At work, customers complained about his softening voice, accusing him of drinking (he was a teetotaler). Although surgery contained the tremor, it aggravated his cognitive changes and speech difficulties.

After Mike went on disability, he joined the neighborhood’s beautification committee. He had his horticulture skills behind him, and this seemed to give him purpose. Instead, after a few months, he came home, reporting that he’d been “ousted.” One of the other members who happened to be a nurse explained that Mike was exhibiting personality changes and none of them pleasant. Toward the end, he became a lone wolf like that little girl at camp.

Thankfully, the Veterans home nurses treated him like family. They appreciated the sense of humor and kindness still lingering under the dementia. He’d been supportive of my writing, and this continued on his good days. Up until a month ago, he giggled at my balloon adventures. I suspect that his relatives in Heaven will welcome him with love, balloons, and flowers. Whatever Mike saw upon passing must have been beautiful, for he had a look of awe on his face. His suffering is behind him, and I’d like to think that he’s filling up on cheesecake, picking balloons, and thinking of me. Heaven has surely gained an angel.

Balloons and Branding

Barbara Custer loves her Mylar balloons and horror tales.Jonathan Maberry, a wise author and mentor, once told me that the best way to get readers is not by pushing your book but by “branding” yourself. Perhaps you have a favorite shirt you might wear to signings. Perhaps everything you live and breathe resonates with Star Trek. I’ve been doing mine via Mylar balloons. Why balloons? I can’t say why, but I find it impossible to shop at most supermarkets without being waylaid by the balloons at the floral aisle. How many balloons do I have? A lot. If you’d like to guess how many, there’s a giveaway involved.

Barbara Custer wrote Close Liaisons, a science fiction book featuring aliens and Mylar balloons.Any time you blog or go to a writing venue you’re “on,” meaning that the way you carry yourself will become part of your brand. So whenever you blog, you’ll want to keep it positive. If you had a quarrel at home, leave it there. Give yourself plenty of time to get to an event because if you show up late, people might associate lateness with your brand. “Oh, yeah, that’s Barbara of the Balloons – she takes her time,” and so forth. When I’m with writer buddies, doing the editor letter for Night to Dawn, or blogging, I usually open the top with my latest balloon escapade at the Giant, Acme, or other market. And I find that balloon analogies have a way of getting the point across.

Michael DeStefano wrote this coming of age novel.Sometimes your brand can creep into your books. NTD author Michael De Stefano, for one, loves baseball, and you’ll find a lot of scenes involving baseball in In the Times of Their Restlessness and his other two books. Tom Johnson’s bouquet of balloons is his life in the military, and his experiences and love of science fiction creep into his Jur novels. Rod Marsden brands himself with his love of history in Ghost Dance, among his other books.

So … I guess you’re wondering if Mylar balloons have crept into my books. Well, let me put it to you this way. Did God make little green apples? Does it snow in Pennsylvania during the wintertime?  Heroine Alexis of Steel Rose kept a squadron of Mylar balloons in her hospital room because she felt that the helium in them, being especially poisonous for Kryszka aliens, might protect her from the renegades. You will also meet balloon queens in Close Liaisons and City of Brotherly Death.

The most important part of branding though is having fun. Why is it so important? Because the branding tool enables people to get to know you in a good way. When that happens, good reviews, if not sales, are likely to follow.

So … how do you go about branding yourself and your work? Do you have a special interest in something that works? I’d love to hear about your experiences.

I’m offering two giveaways: A signed copy of Steel Rose and a copy of Night to Dawn 28, to be given to a random commenter during this blog hop. And if you can guess how many Mylar balloons I have, the person with the closest guess will get an eBook copy of Close Liaisons and City of Brotherly Death.

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Which Compound Words Confound You?

Barbara Custer writes horror and science fiction tales. She collects Mylar balloons, too.During my NTD edits, I find that about fifty percent of them involve compound words. This doesn’t surprise me because I, too, struggle with the proper spelling of compound and hyphenated words. Sometimes I check Google’s dictionary to get the correct spelling. I got to thinking that other writers might have issues with this, so I decided to take a closer look.

Chicago of Manual Style has rules to guide you, but alas, exceptions, too. It’s the exceptions that cause the most problems with the English language. For example, you should hyphenate adjectival phrases used before a noun. Examples: The distance to the hospital is a six-mile drive. The doctors made last-ditch efforts to save the patient.

But we’ve got an exception: I’ve had a 10 percent increase in balloons. “Percent” should be spelled out and not hyphenated.

Hyphenate compounds using “all” when they follow or precede a noun, says Chicago’s Manual. Example: The balloons that watch over me are all-knowing. But compounds with the word “fold” get spelled as one word, as in: My balloon collection has increased threefold during the last five years.

Exception: If the adjective using “fold” involves a figure, hyphenate. Example: The business realized a 20-fold increase in sales.

Words with “like” can be spelled solid. No exceptions. Examples: He’s got a childlike innocence. The balloons are lifelike figures.

Words beginning with “self” get hyphenated at all times. Example: She’s self-sufficient. He’s a self-serving man.

Proper nouns with “wide” get hyphenated. Other nouns do not. Example: The zombie infection spread Hospital-wide. But: The zombie infection also spread citywide.

“Light-headed” and “lighthearted” will get you every time. The first refers to a physical sensation (dizziness) and the second pertains to an emotion. Most other words involving “light” are open, as in “light pen;” the exceptions are “light-headed” and “light-rail.” When the word “light” is the last element in a compound, it’s spelled solid. Examples: flashlight, candlelight, etc.

Certain compounds can be spelled open or closed depending on the meaning. “Long distance” as a noun makes two words, but as an adjective gets spelled with a hyphen. Example: The balloon soared a long distance during the long-distance flight. “Back up” as a verb is two words, as in: I look carefully before I back up my car. As a noun, it’s one word, as in: I called for backup before I saw my patient.

Other compound words, having been used together for a long time, became spelled as one word, such as bloodstains, windowsill, fireman, postman, droplet, etc. I’m hoping one day that “balloon bed” will become a common enough term to be spelled as one word. Because there are so many exceptions, your best friends when it comes to spelling compound words are the Chicago of Manual Style and the dictionary.

So what compound words give you a challenge? I look forward to hearing your thoughts.

This futuristic Science Fiction novella was written by Barbara Custer.The Prodigy of St. Pete's is Michael De Stefano's coming of age novel.

 

Coffee, the Writer’s Best Friend

Yesterday, I took advantage of Ocean City Coffee’s sale and ordered a healthy supply. I heaved a sigh after the order went through. Sometimes if the server is down or my laptop acts cantankerous, this doesn’t always happen. You must wonder what on earth coffee has to do with writing, or even the Mylar balloons that I like so much.

As most writers and editors know, coffee is our best friend. It helps keeps us alert when we have to revise, rework a difficult scene, or find a tactful way to explain to your client why a given scene won’t work. I suspect Jonathan Maberry owns stock in Starbuck’s, just as I should consider some in Ocean City. I want coffee that tastes good.

I first became acquainted with this brand about two summers before Mike went into the nursing home. We went on our last vacation together, a trip to Ocean City. One evening he felt particularly strong; we walked a ways down the boardwalk and happened upon the Ocean City Coffee store. I enjoy flavored coffees—cinnamon, coconut, and the like, so I stock up when I get a chance. Trouble was, every time I found a great store, they closed. So I stocked up over at the coffee shop and chatted with the owners. I promptly fell in love with their coffee flavors, and every few months I stopped by the website to reorder.

Horror fiction by Kevin Doyle involving feral children

Preparation of this book required a lot of coffee drinking. 🙂

Years later, coffee prices went up – coffee prices are going up everywhere, along with the price of balloons. So I thought I’d try cheaper brands, and found a decent coffee in Coffee Beanery. However, Ocean City had many more decaf flavors. I moved onto other brands, thinking I was getting good coffee. Instead, I got something that tasted like brine. I struggled to get it down, and listened to my Mylar balloons chant behind me: We warned you, Bar-ba-ra. When you buy cheap, you get cheap.

I won’t mention the name of the other brands here—not the kind of thing to post on a blog. But if you’re looking for great coffee, you’ll find it in Ocean City Coffee Company or Coffee Beanery. And if you need something really strong, go to Starbucks. My Mylar balloons would agree.

Your thoughts?

 

What Constitutes Negative Publicity?

We see no evil, hear no evil, and say no evil.

We see no evil, hear no evil, and say no evil.

Lately, I’ve been reading posts from folks who complain about “negativity” on Facebook and Twitter. That surprised me because I haven’t seen anything that reeks of flaming, my idea of negativity, so I began speculating as to what constitutes bad publicity. My balloons and I had a long discussion about this, and basically, their philosophy is, “See no evil, hear no evil, say no evil.”

They had a point.

For starters, I listened to Jonathan Maberry, Don Lafferty, and other greats discuss the technique for posting and branding, and their message was clear: avoid negativity in your posts at all costs. I thought about the time I posted when Mike or I was in the hospital or having surgery, wondering if sickness counted as an offensive post. Don assured me not to worry, that people friendly with me would want to know that I’m okay. For that matter, friends would also sympathize with the death of someone close or the loss of a job. So…what constitutes a “bad boy” post?

Political discussions seemed to top the list. Many of our Congressmen create controversial images; people either love or hate them. My thoughts? I keep my opinions out of Facebook and other social media. It’s easy to stay out of discussions about politics on-line and in real life.

Persistent “buy my book, shoes, blah, blah, blah” posts turn people off. Not sure about Twitter, but Facebook polices this one pretty good. Of course, when your book is released, you want to tell people where it’s available. People who know and love your genre will want to buy or at least consider buying. But most of your posts should be about general topics. The experts recommended a ratio of general to “sell” posts of about six to one. This is meant as a guideline, not an exercise in math. The general posts should include topics that other people would find useful and/or interesting.

Bashing a book or company generates bad publicity for everyone involved, including the person who writes the post. My mom once said if you can’t find anything good to say about someone, don’t mention them at all. She had it right. If I read a book I dislike, I won’t review it. There are few stores I avoid, given the balloon factor, but if a place truly gives me the creeps, I just don’t go there. If I had true concerns about a book or store, I’d rather communicate my thoughts in a private email.

Most people don’t set out to hurt anyone. Their intentions may be good, but they might not realize the impact their words have on others. I learned about intent versus impact when I had diversity training at work.

So…what might people consider useful topics? Human interest stories, such as what you see on the news. Example: CVS started marketing Somnapure, an herbal sleep-aid (it works – I use it myself). Lots of folks would give their eye teeth for a decent night’s sleep, but dread the thought of addictive prescriptions, so they would appreciate hearing that they could buy a good sleep aid without any dangers of addiction at their local pharmacy. It never hurts to wish someone a happy birthday. Facebook makes this easy by listing people’s birthdays on your right column under “events” on a given day. Perhaps a good joke would bring a smile. My balloons gave me more good advice: consider how I’d want to treated when I post. Dang, I knew they were smart!

So…have you found a lot of negativity on social media? What kind of posts do you find unpleasant? What kind would you like to see? I’d love to hear your thoughts on this.

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.

 

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