Some people call it "the dark time," the period between when a person is diagnosed with Parkinson's disease and when treatment with medication begins.
Julie Carter, R.N., knows it all too well. The associate professor of neurology in the Oregon Health & Science University School of Medicine hosts workshops to help newly diagnosed Parkinson's patients and their families cope with the prospect of fighting a chronic, degenerative, incurable neurological disease the rest of their lives.
"Some people say it's like looking through a picture window and someone comes along and shatters it," said Carter, associate director of the OHSU Parkinson Center of Oregon, which runs the workshops. "Patients are told they're not ready for medication and to come back in six months. But in these early stages, what you're really dealing with is a diagnosis. You're dealing with a fear of what the future will hold."
And there is a lot that can be done to treat Parkinson's patients, in the early months and beyond. So says an article by John "Jay" G. Nutt, M.D., professor of neurology, and physiology and pharmacology, OHSU School of Medicine, and director of the Parkinson center. The article appearing in the Thursday, Sept. 8, edition of the New England Journal of Medicine outlines reliable, evidence-based strategies for general practitioners to effectively and confidently diagnose Parkinson's, and suggest ways patients and their caregivers can initially manage the disease.
"These are things the general practitioner might not be as aware of," said Nutt, who co-authored the paper with G. Frederick Wooten Jr., M.D., of the University of Virginia Medical Center in Charlottesville. "This is really looking at what is the clinical evidence right now. It gives clinicians an unbiased view of what they might do. It captures the essence of diagnosis and management, and points out where issues exist."
Among these issues is a debate over dopamine agonists. These drugs mimic the effects of dopamine by stimulating dopamine receptors directly and are associated with a two- to three-fold risk of developing dyskinesia and other motor function fluctuations are generally in the first four to five years of therapy. However, they frequently need to be used in combination with levodopa, the drug converted to dopamine in the brain and considered the most common and effective treatment for fighting Parkinson's symptoms.
"One of the biggest controversies now is whether a doctor should start by putting patients on a dopamine agonist or start them on levodopa," Nutt explained. "Starting them on a dopamine agonist means they're less likely to develop dyskinesia," or the "on-off" fluctuations in motor function experienced by many Parkinson's sufferers.
But levodopa is generally more effective. "You get more anti-Parkinson's effects from levodopa," Nutt added. Further, there are fewer side effects, such as sleepiness, hallucinations or ankle swelling, with levdodopa.
There are other drugs for treating motor symptoms, such as anticholinergics, which are antispasmodic agents used to treat trembling; amantadine, which are used to improve muscle control and reduce stiffness; and selective MAO-B inhibitors, which increase the potency of dopamine in the brain and serve as antioxidants to clean out neurotoxins resulting from other treatments. But while they have fewer side effects, they provide only modest relief from many symptoms.
Support and education are critical when informing patients of a diagnosis of Parkinson's disease, the NEJM article points out. Patients should understand that Parkinson's disease often has a course over decades, the rate of progression varies greatly among patients and there are many treatments available for reducing symptoms. Patients also should be counseled about exercise, including stretching, strengthening, cardiovascular fitness and balance.
"Exercise is thought, although not proven, to be really important," Nutt said. "A person can do a lot for themselves to keep many early-stage Parkinson's symptoms at bay."
And support groups, such as those organized by Parkinson Resources of Oregon for newly diagnosed patients, offer ongoing support.
"That dark period can be minimized or alleviated with the right kind of care," Carter said. "The beauty of Parkinson's disease is there are a lot of exciting pharmacological therapies, but people really require the non-pharmacological therapies to live, especially in the early period before drugs are needed. Exercise, nutrition and emotional health are all things that are needed in addition to pharmacological care."
Instilling hope in newly diagnosed patients is part of the treatment process, Carter added. "They're looking for information that can generate hope, and that it doesn't mean an end to a meaningful life. There are a lot of reasons to be optimistic about the future."