Parkinson’s disease is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time. Although some people become severely disabled, others experience only minor motor disruptions. Eventually the most basic daily routines may be affected—from socializing with friends and enjoying normal relationships with family members, to earning a living and taking care of a home. These changes can be difficult to accept.
Support groups can help people cope with the disease emotionally. These groups provide valuable information, advice, and experience to help people with PD, their families, and their caregivers deal with a wide range of issues, including locating doctors familiar with the disease and coping with physical limitations. There are national organizations that can help patients locate support groups in their communities. Individual or family counseling also may help people find ways to cope with Parkinson’s disease (FDA, 2010).
Tremor is the major symptom for some patients, while for others tremor is only a minor complaint and other symptoms are more troublesome. No one can predict which symptoms will affect an individual patient, and the intensity of the symptoms also varies from person to person. Most people respond to medications. How much the medications relieve symptoms, and for how long, varies with each person. The side effects of medications may be severe. Untreated, the disorder will get worse until a person is totally disabled. Parkinson’s may lead to a deterioration of all brain functions and an early death.
People with Parkinson’s disease can benefit from being proactive and finding out as much as possible about the disease in order to alleviate fear of the unknown and to take a positive role in maintaining their health. Many people with PD continue to work either full- or part-time, although eventually they may need to adjust their schedule and working environment to cope with the disease.
With appropriate treatment, most people with Parkinson’s disease can live productive lives for many years after diagnosis.
Palliative care is often required in the final stages of the disease when all other treatment strategies have become ineffective. The aim of palliative care is to maximize the quality of life for people who have the disease and for those surrounding them. Some central issues of palliative care are: reducing or withdrawing drug intake to reduce drug side effects, preventing pressure ulcers by management of pressure areas of inactive patients, and facilitating end-of-life decisions for the patient as well as involved friends and relatives.
The progression of symptoms in Parkinson’s disease may take twenty years or more. In some people, however, the disease progresses more quickly. There is no way to predict what course the disease will take for an individual person. One commonly used system for describing how the symptoms of Parkinson’s disease progress is called the Hoehn and Yahr scale.
Hoehn and Yahr Staging of Parkinson’s Disease
Hoehn and Yahr (1967) devised a system for describing the progression of Parkinson’s disease that comprises five stages:
- Stage one. Symptoms on one side of the body only.
- Stage two. Symptoms on both sides of the body. No impairment of balance.
- Stage three. Balance impairment. Mild to moderate disease. Physically independent.
- Stage four. Severe disability, but still able to walk or stand unassisted.
- Stage five. Wheelchair-bound or bedridden unless assisted.
Unified Parkinson’s Disease Rating Scale (UPDRS)
Another commonly used scale is the Unified Parkinson’s Disease Rating Scale (UPDRS). This much more complicated scale has multiple ratings that measure mental functioning, behavior, and mood, activities of daily living, and motor function. Both the Hoehn and Yahr scale and the UPDRS are used to measure how individuals are faring and how much any treatments are helping them.
The National Institute of Neurological Disorders and Stroke (NINDS) conducts PD research in laboratories at the National Institutes of Health (NIH) and also supports additional research through grants to major medical institutions across the country. Current research programs funded by the NINDS are using animal models to study how the disease progresses and to develop new drug therapies. Scientists looking for the cause of PD continue to search for possible environmental factors, such as toxins, that may trigger the disorder, and study genetic factors to determine how defective genes play a role. Other scientists are working to develop new protective drugs that can delay, prevent, or reverse the disease (NINDS, 2012).