Shake, Rattle and Roll

Coping with the Challenges of Chronic Illness

For the past month, I felt sorry for myself living with Parkinson’s. I was weary from putting on a smiley face and being positive.

Then I got inspired.

Thankfully, what got me out of my funk was reading the article about Meredith Vieira and Richard M. Cohen’s thriving as parents and partners while managing his chronic disease, multiple sclerosis (MS). MS is a chronic, progressive, nerve-destroying condition that frequently results in poor balance, limited strength and blindness.

The following tidbits from the article motivated me:

While chronic illness affects the couple’s life, it doesn’t define their life.

The couple adjusts to Cohen’s increasingly uncooperative body with a mix of realism and denial.

Cohen’s favorite coping mechanism is denial –not necessarily of the present condition but of his future.

There’s no point of losing a good day today, over the possibility of a bad day tomorrow. Cohen says, “I deny the certainty of possible outcomes.”

Chronic disease can challenge one’s faith in the future as well as one’s sense of self-worth.

It is important to keep pain and frustrations from poisoning relationships in the family.

Adapting to a chronic disease is a lifelong process. With each new loss of function, the patient and his or her family must adjust to the new limitations.

Families must learn to function without chronic disease monopolizing everyone’s attention. It is important that the family openly discuss the chronic disease but not be obsessed by it.

The course of chronic disease often parallels the indignities of aging. But with chronic disease, the process is accelerated and tinged with cruelty.

Cohen says: “People feel oddly responsible for their illnesses…It makes no sense…”

It is important to focus on what can be changed and controlled in one’s illness, not aspects which are beyond control.

Cohen’s family doesn’t consider MS to be a blessing. However, as a result of growing up around a chronic disease, his children have learned to be empathetic and patient human beings.

I encourage you to read the entire article and also get inspired at:

Stronger Together

By Margaret Guroff | from: AARP The Magazine | Dec. 2011/Jan. 2012 issue

http://www.aarp.org/relationships/friends-family/info-11-2011/vieira.html

 

 

Shake, Spasm and Stutter

Joel Goldman and I have several things in common: both born and raised in Kansas City, both forced to resign from our careers because of health issues in 2006, and both have a movement disorder. Goldman has tics, and I have Parkinson’s Disease. Although we both appreciate crime novels, Goldman actually writes them, the latest of which, No Way Out, will be released on September 7, 2010.

I was curious about Goldman and his book's main character, Jack, sharing the same movement disorder: tics. My questions were answered in the interview on his website at:

http://www.joelgoldman.com/interview.php

Question: You and Jack have the same movement disorder. What is it and how does it affect your lives?

The disorder is called tics and it is similar to Tourette's. It's not life threatening or life shortening, but it is life annoying. It makes us shake and the more we do, the more we shake, spasm and stutter. The cause and cure are unknown. There are medications that help some people but didn't work for Jack or me and caused unacceptable side effects. We manage our symptoms by balancing our lifestyle, doing as much as we can without becoming walking mini-earthquakes. I spend my days writing. I also work out regularly so that my body can more easily tolerate the disorder. Jack isn't so fortunate. He's drawn into cases that threaten his balance and his life.

Question: Why did you give Jack your movement disorder?

Tics forced me to quit practicing law after twenty-eight years as a successful trial lawyer. Writing Jack's character gives me an invaluable opportunity to explore that experience. Many of us define and validate ourselves through our work. When that is taken away from us, we are forced to dig deeper and find out whom we really are. Jack and I are doing that together.

Flawed characters make the most interesting subjects because authors and readers can identify with them, recognizing our own shortcomings and wondering what we would do in their place without having to bear any of the consequences. Creating Jack Davis allowed me to take this process one step further and learn more about myself as I asked what happens when the same thing goes wrong in my life and my protagonist's life.

Question: How were you diagnosed with this movement disorder?

http://www.joelgoldman.com/shaking.php

I practiced law for twenty-eight years, trying lawsuits all across the United States. In March 2004, I was in trial in San Francisco. I awoke one morning and, while shaving, began to shake uncontrollably. As Perry Mason and Denny Crain proved, you can get away with a lot in the courtroom but uncontrollable shaking is not one of them.

It took over a year and a half and examinations by doctors in New York, New Orleans and Phoenix to get a definitive diagnosis of my condition. I have tics, a neurological disorder with no known cause or cure and a name so totally unimpressive that no self-respecting telethon would ask it out on a date. It occurs so rarely in mid-life adults, that little is known about it. Its closest living neurological relative is Tourette's Syndrome.

Tics is very idiosyncratic, meaning that there is no set pattern or typical course. The more I do, the more I shake, spasm and stutter. My symptoms vary over time, familiar shaking patterns fading into the background, replaced by spasms that hyperextend my neck, arch my back and twist my torso in ways that makes Cirque du Soleil jealous. Tics is not life threatening or life shortening but it is life annoying and it forced me to give up my law practice.

Fortunately, I already had a second life - crime writer. My first series, four books featuring trial lawyer Lou Mason, allowed me to channel the legal career I'd only imagined. Tics gave me the chance to explore the life I'd won in the be-careful-what-you-ask-for sweepstakes by creating a new character, Jack Davis, an FBI Special Agent, forced to give up his career by a movement disorder that makes him shake when he should shoot.

***

In addition to thrill of reading this page-turner, I appreciated Goldman’s language in describing his main character’s thoughts and behavior about living with tics.

From: No Way Out

Page 106-107: “My movement disorder does more than put me through impromptu and involuntary gymnastic routines. It stresses the rest of my brain, sometimes gumming up the gears and making it impossible to concentrate, other times giving me jelly legs. When that happens, I’m no good to anybody.”

Page 115: “My body can be like a teenage girl living on the margins where everything is either the best or worst that ever happened. The ordinary ups and downs of daily existence may pass me by, water off a duck’s back or unleash the demons. There’s little predictability to what will flip my switch except that, when it happens, it happens without warning or opportunity to steel myself. Mine is an erratic vulnerability that drives me crazy, leaving me weak when I have to be strong and causing me to lose control when I have to be in control.”

Page 116: “I corkscrewed into my chair, ignoring my spasms as if everyone’s chin was supposed to be pinned to their shoulder…”

Page 125: “The words tripped out as unexpected and involuntary as the stutter that accompanied them, a guilt-laden tremor rippling through my torso for punctuation.”

Page 135: “My head and neck whip lashed against the head-rest, my right shoulder dipping as my left twisted until it was perpendicular to my sternum, the spasm holding me for a five count.”

Page 152: “The day was wearing on me, twitches and shakes coming and going like wind changing directions…”

Page 169: “A spasm squeezed me from the inside out, clenching my eyes, tugging my chin to my chest and pulling it up and past my left shoulder.

Page 178: “My vocal cords seized, my answer escaping in short staccato bursts.”

Page 179: “…a flurry of tremors ripping from my waist to my neck.”

Page 203: “…a round of shakes rocketed from my belt to my chin, buckling my knees.”

Page 204: “I was still twitching, my left shoulder jerking up and down, alternating with my bobbing chin.”

Page 205: “I shook my head, stuttering as another round of shakes twisted my vocal cords.”

Page 260: “…a full torso, neck, and head, knee-bending twister, putting me on the ground, my hands grasping the soft earth.”

Page 301: “My legs were still equal parts jelly and jam, and the rest of me was doing a slow-motion version of twist and shout.”

Page 351: “The tics arrive on cue, a quick flurry ricocheting from my sternum to my chin and back again.”

Page 353: “One of the curious things about my disorder was that talking about it, especially with someone I didn’t know well, could trigger the symptoms.”

Page 389: “A powerful spasm jerked me forward, bending me at the waist, twisting me clockwise.”

Page 397: “The first-round tremors, the little ones, were flickering through me like internal static electricity not yet rippling along the surface.”

To learn more about:

Tics: http://www.wemove.org/tics/

Joel Goldman: http://www.joelgoldman.com

Your Smirk Did Not Go Unnoticed

“His talking days are over,” she says sadly when describing her husband with Primary Progressive Aphasia (PPA). I try to imagine how this could have happened to a formerly eloquent, quick-witted southern gentleman. About six years ago when he was in his mid-sixties, he was diagnosed with PPA, a rare neurological syndrome that impairs language capabilities.

She elaborates by describing a wintery day in January on their trip to the state motor vehicle department. She and her husband leave their home, navigate the icy sidewalks, and she squeezes her husband into the car. She cautiously drives to their destination.

 

When they arrive, she carefully gets him out of the car, they shuffle in and she props him up near the motor vehicle counter. He becomes mute which by then has become his new normal, and she does all the talking. Not only are his talking days, but also his driving days are over.

 

She explains that her husband no longer can drive, but he does need a state ID. They somehow manage to get his picture taken. When she compares his driver’s license with his photo ID, she can see only a slight resemblance in the two photos. He now has an old face, and he has lost 25 pounds that he didn’t need to lose. He looks more like 93 instead of his current age of 73. She reluctantly turns in his driver’s license, realizing the passing of another stage of life toward death.

As they leave, she notices a man who was staring at them with a smirk on his face. She puts her husband in the car, says to him “I’ll be right back,” and locks the car doors. With purpose to her stride, she marches in to the motor vehicle center, and walks up to the staring, smirking man.

 

She modulates her naturally expressive Italian voice and calmly says “Your smirk did not go unnoticed.”

 

She turns around, leaves and he runs after her. He is no longer smirking.

He says, “I was nervous. I didn’t know how to act,” never denying his smirking.

 

With a sense of pride, she says, “When my husband was working, he had 500 people reporting to him.”

 

He pleas, “I didn’t know. I didn’t know. I am SO SORRY.”

 

She smiles to herself, walks back to the car, opens the car door and drives away, satisfied that that she has taught a valuable lesson.