Diann Shaddox Foundation for Essential Tremor
Specialized Care Urged for Treating Parkinson's Disease
Advocacy Groups Urge Patients to See Specialists for Movement Diseases
By LAURA LANDRO
Beth Hochstein (center) gave up a career as a podiatrist several years after a diagnosis of young-onset Parkinson's disease.. She now is a Zumba instructor and leads classes for people with Parkinson's near her home in Great Neck, N.Y. Zumba Fitness
A new push is on to provide more specialized care for millions of people with Parkinson's disease and related conditions that impair control of body movement.
Advocacy groups say many doctors aren't extensively trained in treating these conditions, yet studies have shown that only some 40% to 60% of patients ever seek care from a specialist.
Patients benefit most under the care of a neurologist with extra training in movement disorders, backed up by a team including mental health professionals and physical and occupational therapists who can help with the diseases' physical and emotional toll, advocates say.
World-wide, the number of Parkinson's patients alone is projected to double by 2030. The aging population accounts for much of the rise in movement disorders, but they are also being diagnosed in younger patients and can be inherited. Parkinson's affects an estimated 1 million to 1.5 million people in the U.S.
For unknown reasons, Parkinson's leads to degeneration in brain structures called basal ganglia, as well as a loss of chemicals, especially dopamine. The loss causes nerve cells to go haywire and can result in tremors, stiffness and loss of motor control, as well as depression and thinking problems. Dystonia, or involuntary, prolonged and often painful muscle contractions, is caused by dysfunction in similar brain regions and affects about 500,000 people, including some Parkinson's patients. Another condition known as essential tremor, which affected the actress Katharine Hepburn, occurs in as many as 10 million people, and some will develop Parkinson's or dystonia.
Movement disorders often progress slowly and can be controlled with drugs including the central nervous system agent levodopa. There are side effects, such as fluctuations in the ability to control movements, low blood pressure and confusion.
Some patients are candidates for surgical procedures such as deep brain stimulation, in which abnormal movements are regulated with electrical impulses from electrodes implanted in the brain. Side effects can include seizure and mood changes and there can be problems with hardware or poor placement of electrodes, among other issues.
New drugs are in the pipeline, and genetic research is yielding promising clues for future treatment. But the least expensive and most accessible treatment often isn't stressed by doctors unaware of its benefits: Exercise, including dance, has been shown to lead to sharp improvements in some symptoms and may even delay progression of Parkinson's.
Beth Hochstein, who was diagnosed with young-onset Parkinson's in 2007 at age 36, was on medication to control tremors. In 2010, she had to give up her career as a podiatrist in Great Neck, N.Y., because of side effects from medication to control her hands during surgery.
A movement-disorder specialist she consulted early on had advised her that exercise "was the best nonmedical help I could get."
Dr. Hochstein had grown up dancing and took it up again, starting with hip-hop and then popular Zumba classes. She trained with a program called Dance for PD led by the Brooklyn, N.Y.-based Mark Morris Dance Company and now teaches a class affiliated with a hospital near her home.
She starts by telling participants how dance helped her control her symptoms.
Treatment centers specializing in movement disorders have expanded around the country in recent years, with funding from the federal government and nonprofits including the National Parkinson Foundation and the Bachmann-Strauss Dystonia & Parkinson Foundation.
A survey by Harris Poll that included more than 500 patients for the Michael J. Fox Foundation, named for its founder, the actor who has the disease, found that fewer than half were aware of movement-disorder specialists.
Only about 28% of Parkinson's patients surveyed were currently seeing one, and only about half felt "informed" or "very informed" about how to control their symptoms, the survey found.
Conventional treatment may not give proper weight to the link between movement disorders and mental health. Patients may experience anxiety and embarrassment caused by uncontrollable movements and tics, as well as a social stigma.
According to the National Parkinson Foundation, most physicians, especially those who lack training in movement disorders, don't know how to deliver a diagnosis of Parkinson's and often leave the patient feeling lost and alone.
Dennis Ploszaj, 65, exercises and volunteers to help patients at the University of Toledo's Gardner-McMaster Parkinson Center. Dennis Ploszjad
Partners in Parkinson's, a new initiative from the Michael J. Fox Foundation, offers on online tool to help patients locate a movement-disorder specialist, in collaboration with the International Parkinson and Movement Disorder Society, whose members include medical specialists. With funding from pharmaceutical company AbbVie Inc., which has a Parkinson's drug in development, the Fox foundation is holding patient and family events where specialists from local clinics demonstrate a comprehensive evaluation.
Patients visiting the University of Florida Center for Movement Disorders and Neurorestoration, in Gainesville, are screened for depression, which can be caused by changes in the brain as well as by sadness about the disease's effects, said Michael Okun, the center's co-director and author of the book "Parkinson's Treatment: 10 Secrets to a Happier Life." Patients receive a neurologist's evaluation of motor function, including their gait and balance, as well as their lung function.
Dr. Okun says the aim is to prevent falls, fractures and a respiratory ailment called aspiration pneumonia, which are the leading causes of injury and death in Parkinson's patients. They can see several specialists in a single day, including mental-health and speech and communication therapists, who can help with issues like swallowing.
A study led by Peter Schmidt, vice president of research at the National Parkinson Foundation, estimates that neurologist care prevents more than 4,500 deaths a year in Parkinson's patients. The foundation trains medical teams and is conducting a large study at 20 clinics in its Centers of Excellence network to identify factors that result in longer and more active lives for Parkinson's patients.
Dennis Ploszaj, 65, of Findlay, Ohio, was diagnosed with Parkinson's in 2005 at age 56, after experiencing shakiness and balance issues while volunteering as a high-school sports referee. He says his doctor told him he might have a decade or so to live and provided little information about lifestyle changes that could help.
"Movement disorder specialist wasn't in my vocabulary," Mr. Ploszaj says. A year later, he attended a seminar held by Lawrence Elmer, director of the University of Toledo's Gardner-McMaster Parkinson Center, and signed on as a new patient.
"There is so much more to offer patients now than just, 'Here, take a pill,' " says Dr. Elmer. He told Mr. Ploszaj that it would be possible for him to delay the disease's progression and lead a good life. Dr. Elmer advised regular exercise.
Mr. Ploszaj signed up for clinical drug trials and hearing and speech therapy. With his disease under control, Mr. Ploszaj now volunteers to help other patients. "A lot of people come in very down and don't yet understand the disease, so I try to pick up their spirits." he says.
Write to Laura Landro at firstname.lastname@example.org
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