Parkinson's Disease: A Family Guide

What is Parkinson's disease?

Parkinson's disease affects not only the person diagnosed but also the family members and caregivers who support them every day. Learning about the condition can help families understand what to expect, navigate everyday challenges, and make informed decisions about care.

As part of our commitment to educating and supporting families, Kourion Home Care shares trusted resources from leading U.S. health organizations. The following guidance draws from educational materials published by the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH).

Parkinson's disease (PD) is a disorder of the nervous system that affects movement and gets worse over time. It causes nerve cells in parts of the brain to weaken, become damaged, and die. This can lead to problems with movement and balance, uncontrollable shaking of the hands or fingers (tremors), and stiffness. As symptoms get worse, people with PD may have difficulty walking, talking, or completing everyday tasks.

PD and the brain

Most PD symptoms happen when brain cells weaken, become damaged, and die in an area called the substantia nigra. The neurons in this area produce dopamine, a chemical messenger that helps produce smooth, purposeful movements. Research shows that by the time PD symptoms appear, most people have lost 60 to 80% or more of the dopamine-producing cells in the substantia nigra.

People with PD also have damage to brain cells that make norepinephrine, involved in automatic body functions like keeping the heart beating and blood pressure steady. Loss of norepinephrine is thought to help explain some non-movement symptoms, such as fatigue and blood pressure changes. Damaged brain cells in most people with PD also contain Lewy bodies — abnormal clumps of a protein called alpha-synuclein.

Common symptoms

PD affects people in different ways, including when symptoms appear and how fast they get worse. Although symptoms often begin on one side of the body, usually both sides are affected. Four common symptoms are tremors (often beginning in a hand, sometimes with a rhythmic “pill rolling” motion), rigidity (muscle tightening that can feel like steady resistance or short jerky movements), bradykinesia (slower movement, including reduced facial expression), and postural instability (balance problems that increase fall risk).

People with PD often develop a parkinsonian gait: stooping forward, less natural arm swing, and small shuffling steps. Some experience start hesitation or freezing, or festination — steps that get faster and harder to slow down. Other possible symptoms include mental and emotional health changes, swallowing and chewing difficulty, speech changes, urinary and digestive problems, sleep problems, cognitive changes, orthostatic hypotension, pain, fatigue, and more.

PD is the most common form of parkinsonism. Other disorders can cause similar symptoms — including multiple system atrophy, Lewy body dementia, progressive supranuclear palsy, and corticobasal degeneration — sometimes called atypical Parkinsonisms or Parkinson's-plus syndromes. These often do not respond as well to levodopa.

Who is more likely to get Parkinson's?

In most people with PD, the cause is unknown. Some cases are inherited and linked to specific genetic variations, but researchers think risk usually comes from both genes and environmental factors across a lifetime.

Non-genetic factors associated with increased risk include age (average onset in the early to mid-60s), biological sex (PD affects more men than women), family history, and environmental exposure to some pesticides and pollutants. Additional factors under study include other health conditions, gut bacteria, sleep, and stress. Genes linked to PD include DJ-1, GBA, LRRK2, PINK1, PRKN, and SNCA.

Diagnosis and treatment

There is not a single definitive test for PD. Doctors consider medical history and a neurological exam, laboratory tests to rule out other causes and look for biomarkers, and brain imaging such as SPECT, MRI, or a DaT scan. Newer tests that detect alpha-synuclein in skin or spinal fluid can support diagnosis but cannot always distinguish PD from related disorders. Genetic counseling can help families interpret inherited risk.

There is no cure for PD, but medicines or surgery can help people move more easily and improve other symptoms. Common medicine approaches include treatments that increase brain dopamine (often carbidopa-levodopa), medicines that change other brain chemicals to ease tremors, and medicines that address non-movement symptoms such as depression.

Movement symptoms may improve substantially after first starting medicine. Over time, medicines may work for shorter periods and side effects may develop. Other treatments can include deep brain stimulation, surgery, lifestyle changes, and supportive therapies. Getting the right dose and combination often takes time and close monitoring by a doctor.

Living with PD

Even though PD usually progresses slowly, day-to-day life changes in ways that affect work and relationships. Support groups can help people with PD, families, and caregivers find doctors familiar with the disease and strategies for living with physical and mood-related effects. Individual or family counseling may also help.

Many people with PD continue to work full- or part-time, though they may need to adjust schedules and environments. In later stages, medicines may no longer control symptoms well, and serious effects can include choking, pneumonia, and falls. Families should work closely with clinicians as needs change.