Parkinson’s Disease and Palliative Care
Understanding Parkinson’s Disease
Parkinson’s disease is a progressive illness of the central nervous system that affects muscles and movement. It develops gradually, sometimes starting with a barely noticeable tremor in one hand. While hand tremors are the best-known sign of Parkinson’s disease, the disorder also causes muscle stiffness, slowing and jerking.
Parkinson’s disease is one of the most common disorders of the nervous system. It damages the system of nerves that the brain uses to tell the body’s muscles what to do. Brain activity is also affected by the loss of dopamine, an important chemical messenger that helps the neurons in the brain do their work.
Parkinson’s disease symptoms get worse as the condition progresses over time. Although the disease cannot be cured, medications can improve the symptoms. So can palliative care.
Understanding Palliative Care
Palliative (pronounced “pal-lee-uh-tiv”) care is specialized medical care for people with serious illness. It focuses on providing you with relief from the symptoms, pain and stress of a serious illness like Parkinson’s disease. The goal is to improve quality of life for both you and your family.
Palliative care is provided by a team of doctors, nurses, social workers and other specialists who work alongside your other doctors to provide an extra layer of support. It is appropriate at any age and at any stage of your illness. You can have it together with curative treatment.
Your palliative care team will help you to match your treatment choices to your personal needs and goals. That will allow you to have more control over your life. In all ways, the palliative care team helps you to better cope with the challenges of living with Parkinson’s disease.
Treating the Symptoms of Parkinson’s Disease—How Palliative Care Can Help
While there is no cure for Parkinson’s disease, there are a growing number of treatments that can provide you with relief from its symptoms. People with Parkinson’s disease are often prescribed a combination of levodopa and carbidopa, which helps replenish the brain’s shrinking supply of dopamine.
A new therapy uses electrodes surgically implanted inside the brain, and a small electrical device called a pulse generator to provide electrical deep brain stimulation (DBS). Parkinson’s patients also benefit from the expertise of physical, occupational and speech therapists to help them manage practical issues in their daily lives.
Other symptoms of Parkinson’s disease include a variety of motion-related issues, as well as sleep disturbances, fatigue (feeling weak or tired), constipation and other gastrointestinal problems, and low blood pressure.
Decisions about nutrition and feeding tubes eventually may become an issue, but the palliative care team will be able to provide guidance on this difficult subject. The social worker on your palliative care team can work closely with you to help you cope with the changes in your health. Sometimes just talking with an expert about what’s happening can be a great relief.
Another whole area of Parkinson’s symptoms is called cognitive decline, whereby ravages of the disease affect thinking and other uses of the brain. These include troubling mood disorders like depression and anxiety, unclear thinking, difficulty concentrating on a task and the potential emergence of dementia.
Some people become more disabled and dependent over time despite the best treatments. They may come to need so much help with the routine tasks of living that they require 24-hour care. This care may be provided at home or in a setting like assisted living, where they get the personal care they need.
Your palliative care team will talk with you about your hopes and preferences, and what may be possible for you to get the support you need to continue living life to the fullest. Because of the long course of Parkinson’s disease, the palliative care team can help you to clarify your goals and set up treatment plans far in advance. There are personal decisions you can make about how to live the life that remains, no matter what direction the disease takes.
Your palliative care team can help you with all this and more. The team will be your sounding board and your first line of defense against any symptoms of pain, discomfort, depression or anxiety.
The team specialists will help you and your loved ones to make both large and small decisions. They will enhance communication between you, your family and your other doctors, and help you to clarify your goals for care.
How to Get Palliative Care
If you or a loved one is facing Parkinson’s disease, ask your doctor for a referral to palliative care—the earlier the better.
Although living with Parkinson’s disease is difficult, your burden may be easier when palliative care is involved. You can receive palliative care in the hospital, at an outpatient clinic and sometimes at home.
Be informed about your condition, its treatment and what you can expect. And if you have received a Parkinson’s diagnosis, or if the burden of illness is growing, don’t hesitate to ask for a palliative care referral to help you make sense of the situation. With the support of palliative care, you can help ensure that you achieve and sustain the highest quality of life possible.
For more information, visit GetPalliativeCare.org. Take our quiz to find out if palliative care is right for you. And find providers in your area by visiting our Palliative Care Provider Directory.