Do You Need Help with Symptoms and Stress from Parkinson’s Disease?
By Andy Esch, MD
Parkinson’s disease is a slowly progressing and long-lasting condition that can cause many challenges to those diagnosed and their families. In addition to affecting muscle movement, it can impact mood and cognitive abilities; involve pain; cause sleep disturbances and other distressing symptoms. While it’s not curable, much can be done to manage the disease and its symptoms. For example, patients and families can ask for a referral to a palliative care team — a medical team that focuses on improving quality of life and relief of symptoms and stress caused by living with serious illnesses.
An Extra Layer of Medical Support for the Long Term
Palliative (pronounced “pal-lee-uh-tiv”) care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with treatment geared to the Parkinson’s disease (PD). The team will work with you and your family for as long as you want.
When to Consider a Medical Referral to a Palliative Care Team?
The short answer about when to seek a palliative care referral is the sooner the better. Although living with PD is difficult, your burden may be easier with palliative care involved.
Palliative care teams start by getting an in-depth understanding of what matters most to you and learning about your goals of care. They help you match your treatment choices to your personal needs and goals. They will check to see if your goals or needs have changed over time. This allows you more control over your life.
In addition to being your first line of defense against symptoms, the team focuses on your emotional and spiritual well-being to help you better cope with the challenges of PD. They will help with communication among all medical providers involved in your care and connect you to resources geared to improving your quality of life.
Palliative Care Shows Benefits Specific to Those with Parkinson’s and Their Caregivers
An important new study of palliative care plus standard care among people with PD and related disorders found benefits to both patients and their caregivers. The study included patients with a range of disease severity, and the benefit occurred in every group. Quality of life improved and symptom relief was reported for patients. Caregivers reported less anxiety and grief. Patients who received palliative care along with standard care also had improvements in motor symptoms, which was unexpected. The outpatient study was done at three academic centers with specialized Parkinson’s clinics.
How to Find Palliative Care
Palliative care is a medical specialty that requires a referral from your doctor. This could be your neurologist or your primary care doctor. You can receive palliative care in the hospital, at an outpatient clinic and sometimes at home.
Reminder: Stay Safe from COVID-19
As someone with a serious illness, it’s important to keep following health and safety guidelines related to COVID-19. The virus is still circulating and you may have more than one risk factor that could lead to severe complications if you catch this infection. The virus is spread through person-to-person contact, via respiratory droplets produced when an infected person coughs, sneezes or even simply talks. It’s not always clear if someone is infected, so the U.S. Centers for Disease Control advises that individuals in higher risk groups maintain health and safety practices. These include proper and frequent handwashing or use of hand sanitizer, wearing face coverings in public, and physical distancing with anyone outside of your immediate household. Visit the COVID-19 information pages at GetPalliativeCare.org to learn more.
Dr. Esch is acting vice president of education at the Center to Advance Palliative Care. A palliative care specialist, Dr. Esch focuses on improving quality of life for patients and their families as they face serious illness. Dr. Esch earned his medical degree from the University of Buffalo.