Jill Trudeau knew something was wrong when her left hand began shaking as she did some routine typing at work. The neurologist she consulted said she had essential tremors, a neurological disorder that causes rhythmic shaking. She still recalls his advice: “Relax, have a glass of wine and don’t worry.”
The problem is, he was wrong. It would take two more years for her to get an accurate diagnosis.
By then, in June 2010, her shaking was more noticeable. She attended a seminar at Eisenhower Health in Rancho Mirage, where a specialist outlined the differences between essential tremors and Parkinson’s disease (PD). “That difference was what I saw in me,” she says. She was 58.
David Roberts was 53 when he noticed he wasn’t as fast as he’d once been in his regular cycling group. “I had trouble keeping up,” he says. Then his left arm became stiff, and he sometimes had trouble putting on his coat. David’s wife, Karin, got scared the day she spoke to him and “his facial expression was frozen — vacant,” she says. “It never occurred to us this was Parkinson’s.”
Like Trudeau, the Roberts found the expert help they needed in the Parkinson’s and Movement Disorders Clinic at Eisenhower Health, specifically with Neal Hermanowicz, MD, FAAN, who is Board Certified in Neurology and fellowship-trained in Movement Disorders.
Zeroing in on the issues
The term “movement disorders” refers to a group of neurological conditions that cause abnormal movement. Depending on the specific disorder, that can mean abnormally rapid, slowed down or involuntary.
Dr. Hermanowicz sees patients with a wide range of movement disorders, including dystonia, marked by often painful muscle contractions; ataxia, a loss of muscle coordination; and Tourette syndrome, known for sudden movements, twitching and verbal outbursts. By far, the most common disorder he sees is Parkinson’s, the fastest-growing neurological diagnosis worldwide.
The brain changes result in the gradual alteration of brain circuitry central to movement, thinking and behavior. People with PD may endure what Dr. Hermanowicz calls “a range of torments,” such as slowness of movement, stiffness, tremor, impairment of balance, changes in speech, sleep disruption, bladder and bowel problems, cognitive changes, sometimes hallucinations and dyskinesia (involuntary movements sometimes caused by levodopa, a mainstay of Parkinson’s disease treatment).
“Current thinking is that Parkinson’s in some people is caused by a combination of environmental factors such as chemicals, toxins or head trauma, along with genetics,” says Dr. Hermanowicz. “However, the cause or causes for most people are still not known with certainty.”
Research suggests that Parkinson’s may actually start “a decade or more before people show up in medical offices to see doctors like me,” he adds. Early predictors may include impaired sense of smell and a phenomenon called REM Sleep Behavior, where people act out their dreams while sleeping, talking or shouting, or moving their arms and legs as though they are running, or struggling, as in a fight. Another clue may be infrequent bowel movements. “For some people, this disease may begin in the gut.”
Optimizing quality of life
Dr. Hermanowicz has seen public awareness increase dramatically over the last few decades, largely due to celebrities diagnosed with PD, including actors Michael J. Fox and Alan Alda, boxer Muhammad Ali, Rev. Jesse Jackson, singer Neil Diamond and diplomat Colin Powell.
Incidence of PD generally increases with age beginning at the 50s to 60s. So far, research has failed to find a cure. “We don’t have any reliable way to change the course of Parkinson’s,” says Dr. Hermanowicz, “but we can change the course of the symptoms. Our goal is to optimize quality of life for every patient.”
The tools that PD specialists currently have include medications that improve symptoms, and for some people, deep-brain stimulation (DBS), which alleviates symptoms by implanting electrodes in certain areas of the brain.
A PD diagnosis can be “a bomb going off in a household,” says Dr. Hermanowicz, often casting the patient’s partner into the role of instant caregiver.
Diagnosed in 2011, David Roberts was a systems engineer for over three decades at the Department of Defense’s Naval Systems Warfare Center in Corona, CA. His early symptoms didn’t impact his work, but he opted to retire three years later.
Karin resigned her position as executive director for Habitat for Humanity in Riverside. She had no doubts about taking on a caregiver role — “For better or worse,” she says. Her toughest challenge is not offering immediate help, instead waiting until her husband asks. “This is tougher than it sounds,” she admits.
Roberts loves tinkering on his two vintage cars — a 1975 Porsche 911 and a 1965 Mustang Fastback. “I can do most things,” he says. “I sometimes have to ask for help with small tasks like buttoning my shirt sleeves.”
In 2014, Dr. Hermanowicz connected the Roberts to a clinical trial in Europe studying a possible new medication. They moved for a year to Vienna, Austria, and credit the treatment with helping to slow David’s PD.
With exercise key for anyone with Parkinson’s, the Roberts take twice-daily walks. “We lead almost the same lives,” says Karin. “We travel, attend opera, theater and film festivals, hike —just much slower.” Her husband quickly interjects, “Not much!”
Standing up to the disease
Trudeau doesn’t have a regular caregiver or need to rely on one yet. “But even if I had a partner, not all spouses are cut out to take on that role,” she says.
A native of Los Angeles, Trudeau built her career as an executive at a national TV production and post-production company in New York City, before returning to her home state. At the time of her initial diagnosis, she was human resources manager at The Desert Sun newspaper and wrote a weekly column, Queen of Hearts, about her lifelong passion — poker.
Now 70, a dozen years after her diagnosis, she calls the disease “inexorable” but says she’s functioning well. “I’ve been lucky because my symptoms have progressed slowly.” She is grateful for Dr. Hermanowicz’s knowledge, empathy and compassion and refers to him and his program manager, Terry Randall, as “the best possible cheerleaders.”
What bothers Trudeau most is the loss of her ability “to do certain ‘executive functions,’” she says, such as multi-tasking or playing poker at her once-championship level. She keeps active walking with her Chihuahua, Tinkerbell. “It takes more time to get things done,” says Trudeau, “but I get them done.”
Dr. Hermanowicz is actively seeking clinical trials into Parkinson’s to bring to Eisenhower Health. With so much still to learn, he is clear about the discovery he’d like to see happen. “The increasing numbers of people diagnosed with Parkinson’s disease has led to an increased effort around the world to develop better treatments, and treatments that address not just the symptoms, but the disease itself,” he explains. “I want to know what my patients and their families want to know — why did they get this and how do we stop it?”
For more information or to contact the Parkinson’s and Movement Disorder Clinic, call 760.837-8785 or visit EisenhowerHealth/Neuro.
In addition to Dr. Hermanowicz, John Legge, MD, Board Certified in Neurology with fellowship training in Movement Disorders, is located in Palm Springs at the Eisenhower Health Center at South Palm Canyon. For more information, call 760.773.4560.