Diann Shaddox Foundation for Essential Tremor
Essential tremor: Aiken resident lives with, raises awareness of disease
Stephanie Turner Email stephaniedturnerAS
Oct 11 2015 3:47 pm
Staff Photo by Stephanie Turner
Diann Shaddox was diagnosed with essential tremor in her early 20s. Today, she is the founder of the Diann Shaddox Foundation, which raises money and awareness of essential tremor, and is an author, with her first book “A Faded Cottage” also featuring the main character with the disease.
You’re out enjoying a meal with your friends, when you hear a clattering behind you.
Curious, you look over your shoulder to see another patron trying to grasp his fork with a trembling hand.
“Essential tremor (ET) is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk."
It is said to affect at least seven million Americans, according to a 2014 “Tremor and Other Hyperkinetic Movements” journal article.
“Everyone has some ... tremor. But these movements usually can’t be seen or felt. It’s Hopkins Medicine.
Diann Shaddox, an Aiken resident in her late 50s, discovered she had ET in her early 20s.
Her hands would start to shake while she was just doing normal tasks, she said in her biography.
“In the beginning, doctors told me to go home, (that) I was nervous,” she said.
Shaddox knew that wasn’t true, so she bypassed the doctors and went straight to a neurologist, who immediately knew she had ET.
Last year, Shaddox began the Diann Shaddox Foundation with Randy Miles as the executive director; Quaid Witherspoon, the protagonist of her 2013, debut book, “A Faded Cottage: A South Carolina Love Story,” also has ET.
“Essential tremor (ET) is the most common movement disorder. It is a progressive, often inherited disorder that usually begins in later adulthood,” according to John Hopkins. “Essential tremor is thought to be caused by electrical fluctuations in the brain that send abnormal signals out to the muscles.”
The gene that causes ET has not been identified, and how it’s inherited, if the person does inherit it, differs among patients, according the National Library of Medicine’s Genetics Home Reference.
In some causes, “they almost know it’s coming, because generation after generation have a pretty pronounced tremor,” said Dr. Michelle Lyon, Carolina Musculoskeletal Institute’s neurologist.
Staff Photo by Stephanie Turner Dr. Michelle Lyon is the neurologist at Carolina Musculoskeletal Institute
Since Shaddox’s father passed away before she was born and her mother died when Shaddox was a toddler, she isn’t completely sure how she got her ET, though she suspects it’s from a great aunt whose hands would shake.
“In most affected families, essential tremor appears to be inherited in an autosomal dominant pattern, which means one copy of an altered gene in each cell is sufficient to cause the disorder, although no genes that cause essential tremor have been identified,” according to the National Library. “Essential tremor may also appear in people with no history of the disorder in their family.”
There is no genetic test to detect whether or not you will get ET, Lyon said.
“Your health care provider will ask you questions about your health history and family history. He or she will also look at your trembling symptoms. Your provider will probably need to rule out other conditions that could cause the shaking or trembling,” according to John Hopkins.
ET is often confused with Parkinson’s disease, which affects less people and is more detailed in its symptoms than ET, according to Lyon.
Parkinson’s, for example, “generally involves slow movements (bradykinesia), rigidity (stiffness) and problems with walking or balance,” whereas those symptoms are abnormal in people with ET, according to the International Essential Tremor Foundation.
Living with ET
“This (condition) affects all nationalities, all sexes, all ages – all everybody,” Shaddox said.
In addition to running the Diann Shaddox Foundation and publishing “A Faded Cottage,” Shaddox has written time-traveling romance “Whispering Fog” and the historical “Miranda: Her Life’s Story,” with proceeds from her books benefiting her foundation.
The condition first affected her right hand before progressing to her left.
Shaddox can no longer write for extended periods; when she does write, the words are often scribbled.
“If you are right handed, don’t use your right hand; (then) write your name when you are tired, and just keep writing your name, until your hand gets tired. That’s kind of like ET,” she said. “Really simple acts can be horrifying.”
Trouble with writing and eating are often when people come in to get examined, according to Lyon.
“They are embarrassed to go out to eat at a restaurant because they are unable to hold the fork and cut the food,” she said. “I think a lot of people ignore it, until they get to that social situation.”
Shaddox often has to use her opposite hand to steady the one cutting food or putting on make-up and can no longer cross-stitch or play the piano.
Though her hands trembling are the more noticeable symptom, Shaddox’s head shakes back and forth, and she can feel her voice starting to tremor.
“I’ll take two (words) and make up a whole new word while I’m talking,” she said, adding that she also mixes up and forgets words.
The tremors tire her hands but do settle when the limbs are resting, and Shaddox can drive.
“My case is mild,” she said.
Stress, hunger, fatigue and anger can aggravate the tremors, according to the National Institute.
“My hands look like a bird’s wings flapping, when I get stressed,” Shaddox said. “It’s so embarrassing when you are sitting there, and people are staring at you when you are trying to write. You want to scream, walk out, because it’s embarrassing.”
ET has no cure but can be treated, according to Lyon.
Medicines prescribed can include tranquilizers, ones that “affect how brain nerves work” or are anti-seizure, according to John Hopkins.
When the condition is so severe and medicine doesn’t help, there are surgical options, Lyon added. Two are deep brain stimulation and thalamotomy, with the main difference is thalamotomy, which, according to the American Academy of Neurology, actor Micheal J. Fox underwent for his Parkinson’s, involves destroying a piece of the brain while deep brain stimulation does not, according to the International Essential Tremor Foundation.
MCT Graphic/”Minneapolis Star Tribune,” 2009 This graphic explains how deep brain stimulation, using a device similar to a heart pacemaker, can improve the quality of life for people suffering from Parkinson’s disease. The procedure is also used in more severe cases of essential tremor.
Shaddox no longer takes medication but does lift weights and tries to stay healthy.
When she does her public appearances, she might have some wine nearby, as the drink temporarily calms her, she said.
Shaddox has 16 more books she wants to publish and would like to see her foundation match the The Michael J. Fox Foundation for Parkinson’s Research’s scale.
Shaddox said the foundation’s An Evening in the 1800s with Kim Peevy that was scheduled for Saturday has been postponed but she will have a book signing in April.
“The foundation’s mission is to bring awareness, to educate,” Miles said.
If you are experiencing abnormal tremors, consult with a physician.
For more information on ET, visit www.diannshaddoxfoundation.org, www.aan.com, andwww.essential tremor.org.
Stephanie Turner graduated from Valdosta State University in 2012. She then signed on with the Aiken Standard, where she is now the arts and entertainment reporter.