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Brain 'pacemaker' puts everyday tasks within woman's grasp
Standing in an art class, Patty DiCioccio lifted her pencil and extended her hand toward the easel. As others began to sketch, she felt her hand clench and begin to tremble.
The particular motion that triggered her essential tremor disorder had struck again, leaving her unable to make a steady mark on the page.
"I just stood in the middle of that class and cried," said the 64-year-old. "I guess, psychologically, I never got over that."
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Since high school, DiCioccio of Laguna Niguel had experienced trouble with her hands. Her writing began getting smaller, and she couldn't keep up in a class on shorthand. It wasn't until years later, though, when she was making a birthday cake for her toddler son that she really noticed something was wrong. She couldn't control the shaking of her hand.
At first, doctors said it was nothing. Finally, a neurologist diagnosed essential tremor, a disorder that causes shaking in a person's arms while performing certain actions. It made sense — she remembered her father had to stop playing the violin because his hands would shake.
DiCioccio went on medication, which managed many of tremors but left her with side effects. For the most part, she avoided the movements — any hand motion away from her body — that caused a tremor to set on. Once she felt them coming, she couldn't stop them. While holding a coffee cup, for example, she couldn't stop shaking long enough to drop the cup and avoid a burn.
She didn't like to let it slow her down, but about 15 years ago, family members began to notice.
"It just gets progressively worse the older you get," she said.
When it came to helping others, she wasn't one to sit back and accept limits. She patiently helped care for a grandchild with special needs. When a neighbor with young children needed advice, she was there.
With symptoms continuing, she felt like the medication wasn't working. After going off the pills, though, she saw they had actually been effectively masking severe tremors.
"I didn't realize how bad I was," she said.
And when she tried to go back on, her body rejected them — leaving her staggering and slurring her words.
Without the help of medication, DiCioccio had difficulty with everyday activities such as getting dressed, eating and drinking.
The only answer would be getting to the root of the problem — inside her brain.
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Deep-brain stimulation was approved by the Food and Drug Administration in 1997, but it's still an underused therapy, said Dr. Devin Binder, medical director of the deep-brain-stimulation program at Orange Coast Memorial Medical Center in Fountain Valley.
Electrodes inside the brain pinpoint areas to treat with electrical pulses. Wires connect the electrodes to a battery implanted into the chest, similar to a pacemaker. The treatment is approved for essential tremor and Parkinson's disease, though research is ongoing into applications for other conditions, from epilepsy to obesity.
"Neurologists and physicians are getting much more comfortable with this whole cybernetic new world," Binder said.
Because she was in good health aside from the severe tremors, DiCioccio was a perfect candidate to benefit from the procedure.
"The quality of life of people after they undergo this procedure is much better than with medication," Binder said.
DiCioccio's brain "pacemaker" involved four surgeries last spring to place the electrodes and batteries. Though the thought of brain surgery was a little unnerving, she said the hospital staff made her feel comfortable throughout the process.
"It wasn't easy, but it wasn't extremely difficult either," she said.
During the two-hour procedure of inserting the electrodes, DiCioccio remained conscious. Frankenstein-like screws braced her head, she said, and though she remembers talking to the doctor, she wasn't aware of fear or time.
"You don't feel anything," she said. "It just looks frightening."
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DiCioccio jokes that she's a bionic woman now, though one wouldn't know by looking at her. The bumps of the devices can only be felt, and wires in her neck are just faintly visible when she stretches. With the electrodes attuned to her, tremors stopped almost immediately. Complete recovery didn't come as quickly as she might have liked, though.
"I taught myself to hold things differently," she said. "Now I don't have to be so tense."
Though unlearning bad habits led to some jerky movements at first, DiCioccio marvels at being able to do the daily tasks that were once literally beyond her grasp. She flipped a pancake without making a mess. More notably, she made it through an entire art class, keeping her paintbrush on the paper and managing to produce some semblance of flowers.
"Even if I just did that one thing, I conquered it," she said.
To make things smooth for others undergoing the surgery, DiCioccio created a list of tips about what to expect and passed them on to Binder. For those coming out of the procedure, she's been making wool hats. The warmth seems to calm tingling nerves, and they also cover up the bald spot. She encourages potential patients not to be afraid.
"Why live like that anymore?" she said. "Everything in your life is going to change now."
Knowing that the procedure involves just moments of discomfort is reassuring to DiCioccio — her daughter also has been diagnosed with essential tremor. And the technology can only get better by the time her daughter might need surgery, DiCioccio said.
"I feel that there's hope for her now."