Your Life—Living with Parkinson's
Parkinson’s disease (PD) is challenging to live with, as it causes progressive changes to motor function as well as many other non-motor symptoms, including depression, sleep problems, pain, and cognitive dysfunction. The disease greatly impacts the quality of life of both the person with PD, and the caregiver or care partner. Although there is much about PD that is uncontrollable, taking an active role in treatment, including adhering to a medication schedule and making healthy lifestyle choices, can provide a sense of control and help people with PD live their lives to the fullest.
When you’re first diagnosed
When you first learn about PD, it can be overwhelming. There is much to learn about the disease, its symptoms, and the different treatment options. However, learning about the disease can help you take back control and shed light on the unknown aspects.
Assistance and modifications
The symptoms of PD can make daily activities challenging, but there are many assistive devices and adaptations that can be made to your home that make it easier to cope with the symptoms. Assistive devices are available that can help with walking, eating, getting dressed, and making writing easier. Home adaptations range from small, easy to incorporate changes to major building changes that require construction. Making the necessary home adaptations can make it easier for someone with PD to continue to engage in their daily life, and some of the modifications are beneficial to reducing the risk of falls, which are common among people with PD.
Working with Parkinson’s disease
Many people who work before their diagnosis continue working, although some modifications may need to be made to the workplace or the job duties to enable someone with PD to continue contributing.
Driving and Parkinson’s disease
The ability to drive safely can be impaired by PD, as the disease has multiple effects on motor, cognitive (thinking), and visual functioning. However, giving up driving can be difficult, as driving is connected to an individual’s sense of independence, personal control and self-reliance. It’s important to evaluate how the symptoms of PD might be impairing the ability to drive. Drivers can also get an on-road assessment of their abilities at their local Department of Motor Vehicles.
Coping with the symptoms of Parkinson’s disease
In addition to medication, there are steps you can take to help manage the symptoms. For example, there are several techniques you can learn that can be useful in overcoming “freezing,” a sudden, but temporary, inability to move. If you experience changes to your voice, there are voice exercises that can help.
Coping with the side effects of medications
Levodopa-carbidopa therapy is the most effective treatment for alleviating the motor symptoms of PD, however, long-term treatment with levodopa may cause dyskinesia (spontaneous, involuntary movements). Dyskinesia can greatly impact a person’s quality of life, and some people find it very disturbing. While there are currently no treatments for dyskinesia, it is an ongoing area of research. For those people who experience dyskinesia, medications may be adjusted or deep brain stimulation may be an option.2,3
Some medications used to treat PD can cause impulse control disorders, behavioral disorders in which the person acts out repetitively, excessively, and compulsively in ways that interfere with major areas of life functioning. The most common impulse control disorders seen in people with PD are excessive shopping, unusual or increased sexual behavior, compulsive gambling, and compulsive eating. Identification and treatment of these behaviors is critical as they can have devastating effects on the patient’s and caregiver’s lives.1
Other health conditions that are linked to Parkinson’s disease
People with PD have a higher incidence of some other diseases, including diabetes, melanoma (a type of skin cancer), osteoarthritis, gastrointestinal diseases, genitourinary dysfunction, and cardiovascular disease. Many people with PD also have a vitamin D deficiency.4-8