What to Know About Managing Parkinson’s Disease

Parkinson’s disease often starts with a tremor in a finger, muscle stiffness, or slowness of movements, often on one side of the body. These are signs of an abnormality in a part of the brain that controls mobility, which will worsen over time. Nobody knows how the disease will progress in an individual—some people will have mild symptoms that worsen very slowly but never become severe, while many others will develop difficulties with walking and speaking, cognitive issues, and other life-changing problems.

“The problem with Parkinson’s disease is that it alters how people interact with the world around them—and the confidence they have in being themselves,” says Veronica Santini, MD, MA, director of the Adams Comprehensive Parkinson’s Disease Care Center at Yale, who works with the disease both as a clinician and a researcher. “Our definitive goal for this disease is, eventually, to be able to stop or slow down its progression. We want to help patients go back to feeling comfortable in the world that they love and be the people they want to be.”

Although promising research is expected to have an impact on patients’ lives in the years to come, there is currently no cure for Parkinson’s disease. Newly diagnosed patients, however, want to know how to manage their condition now.

“People should think about what type of life they want to try to lead within the limitations presented by the disease and work with their doctor to try to alleviate their Parkinson’s symptoms to allow them to do that,” says Amar Patel, MD, a Yale Medicine neurologist.

There are tools, strategies, and treatments to help patients manage their symptoms, Dr. Patel adds. These can be as basic as occupational therapy and exercise, or as complex as deep brain stimulation, a procedure that involves the surgical implantation of a device used to quiet the brain and tone down Parkinson’s symptoms when they are severe.

Dr. Patel and other Yale Medicine specialists who care for patients with Parkinson’s disease spoke to us about various approaches to managing the condition.

Parkinson’s disease is a degenerative brain condition that causes a variety of symptoms, notably uncontrollable movements, including shaking, stiffness, trouble with coordination and balance, and cognitive difficulties. It’s a progressive condition affecting nearly 1 million Americans that worsens over time, although this can vary from one person to another. And although Parkinson’s alone is not a fatal condition, it can lead, over time, to conditions or issues that are life-threatening and/or fatal.

The condition predominantly affects a small structure of the brain called the substantia nigra. This paired structure (with two identical halves) is part of the basal ganglia, a circuitry of cell bodies located deep within the brain that helps drive bodily movements and other behaviors.

The substantia nigra is critical because it is the production center for dopamine, a chemical messenger that plays a key role in motor control and muscle movement. When a person has Parkinson’s disease, nerve cells (or neurons) in the substantia nigra weaken and die or become damaged, and dopamine production is depleted.

Scientists don’t know what initially triggers Parkinson’s—or why cells in the substantia nigra start to weaken in one person and not another. The disease does not tend to run in families, although some cases appear to be hereditary. Many experts believe the condition results from a combination of genetics and exposure to environmental factors, such as pesticides or other toxins.

One thing experts do know is that Parkinson’s disease starts well before symptoms surface—patients typically only notice motor symptoms after 60% to 80% of the substantia nigra neurons are lost or impaired, according to the Parkinson’s Foundation. “We know that those changes have been happening for a year or two, potentially even longer,” Dr. Patel says.

In addition to early symptoms, such as tremors and stiffness, people might notice they are taking smaller steps or shuffling, or even “freezing,” temporarily unable to move at all. The problems start gradually on one side of the body and eventually affect both sides. The disease can take 20 years or more to progress, or it can develop much more quickly.

“There might be muscle stiffness in a particular arm or leg, then later a tremor in that same arm or leg,” Dr. Patel says. “A person may feel they are moving more slowly than usual, they can’t make full facial expressions, their posture is stooped, or they are shuffling when they walk.”

There are four primary Parkinson’s motor symptoms, although they can vary from one person to another. They include:

• Tremor: As many as 80% of people with Parkinson’s develop a tremor, an involuntary twitching that usually occurs at rest. It can also affect the jaw area. This usually starts on one side of the body and may or may not progress to the other side.

• Rigidity: Stiffness in the arms and legs or torso beyond that of normal aging.

• Bradykinesia: Slowness of movement. This can include a decrease in blinking, as well as in smiling and other facial expressions.

• Postural instability: This includes gait and balance problems that are associated with a tendency to fall backwards.

Other symptoms are not movement-related. Among these are changes in the voice such as a decrease in volume, drooling and swallowing problems, depression and anxiety, hallucinations, constipation, sleep disorders, and cognitive impairment.

Age is a major risk factor. The incidence of Parkinson’s disease rises starting at age 65, and it is most prevalent in adults who are 80 or older. But adults can develop it at any age, even in their 20s. (Michael J. Fox, the actor and founder of the Michael J. Fox Foundation for Parkinson’s Research, was diagnosed at age 29.) The disease affects slightly more men than women.

While Parkinson’s disease doesn’t tend to run in families, a person’s risk is higher if they have a first-degree family member, such as a parent or sibling, with the condition. “That might mean you're more susceptible to developing it than somebody without a family member who has the disease. But none of that makes one person’s risk easier to determine,” Dr. Patel says. “We still don’t know why a particular individual develops it.”

There is no blood test or X-ray that can provide a conclusive diagnosis of Parkinson’s disease.

In fact, the “gold standard” for diagnosis is a person’s medical history combined with an examination in the doctor’s office, Dr. Patel says. The latter includes an assessment of the patient’s muscle strength and how quickly they are able to move, along with an evaluation of such symptoms as rapid movements and tremors, including the types of tremors and what activities bring them on.

“For instance, we analyze how patients walk up and down a hallway—even multiple times—to look for patterns,” Dr. Patel says.

Imaging tests, such as an MRI of the brain, may support the diagnosis or rule out conditions that have similarities to Parkinson’s disease, Dr. Patel says. “For instance, a stroke in a certain part of the brain can cause walking difficulties, or a condition called normal pressure hydrocephalus [NPH], an abnormal buildup of cerebrospinal fluid, sometimes mimics the symptoms of Parkinson’s disease.”

A DaTscan (dopamine transporter scan), a type of imaging that focuses on the dopamine-producing cells, can also help support a Parkinson’s diagnosis. DaTscan involves an injection of small amounts of radioactive dye to mark dopamine receptors in the brain. Once administered, doctors can use an imaging device called a single-photon emission computed tomography (SPECT) to identify reduced dopamine levels in the brain.

Managing Parkinson’s disease involves a variety of considerations, including the person’s symptoms, lifestyle, day-to-day challenges, and the extent to which the disease has progressed.

It’s important to note that people with Parkinson’s aren’t always treated with medication right away. Instead, they may be encouraged to stay active. Research shows that exercise can help control symptoms and might even slow the disease's progression (more on that below). Other beneficial lifestyle changes include following the Mediterranean diet, getting enough sleep, and engaging in intellectually stimulating activities.

When symptoms begin to significantly impact daily life, however, medications are usually prescribed to help increase dopamine levels, which decrease as the disease progresses.

One of the most effective medications is levodopa, which the body converts into dopamine. It comes in several forms, including pills, dissolvable tablets, and liquid. For advanced cases, a surgeon can insert a small tube into the small intestine to deliver levodopa continuously, providing better symptom control.

“While there are other medications, levodopa, which may be given with another drug called carbidopa, has been the primary treatment for people in severe stages of Parkinson’s disease for decades,” says Dr. Patel.

Another group of drugs, called dopamine agonists, mimic dopamine's effects in the brain but are generally less effective and can cause side effects like nausea and vomiting. MAO-B inhibitors and COMT inhibitors can also enhance the effectiveness of dopamine, though they are typically used alongside other medications.

It's important to note that the effectiveness of these medications can diminish over time. For instance, levodopa might become less reliable, leading to "off periods" where symptoms, such as tremors and muscle issues, reappear unexpectedly.

For very severe symptoms, such as intense tremors or frequent "off periods," a surgical option called deep brain stimulation (DBS) may be recommended. This procedure involves implanting small electrodes in specific areas of the brain. Those electrodes are connected to a battery placed under the skin in the chest. The battery sends electrical signals to the electrodes, helping to block problematic brain activity without harming healthy tissue.

“When the disease progresses and the medication effect becomes more variable, DBS can have a clinically meaningful benefit in 90% of cases, often making tremors resolve completely,” Dr. Patel says. “While DBS is not a cure, the results can sometimes be dramatic and life-changing.”

Basic lifestyle changes can have a beneficial impact on quality of life for people with Parkinson’s disease. In addition to medical care, people may consult with specialists to help with sleep, nutrition, and gastrointestinal symptoms—constipation is a “hallmark symptom” of Parkinson’s, Dr. Patel says. They may also consult a therapist to help with mood disorders, such as anxiety and depression.

Research shows that exercise can help with maintaining balance, flexibility, and mobility, and may even help slow the progression of the disease. The Parkinson’s Outcomes Project, a clinical study spearheaded by the Parkinson’s Foundation, showed that the decline in quality of life slowed for people with Parkinson’s disease who started exercising for at least 2.5 hours a week early in their disease compared to those who started later.

“We’re starting to understand how exercise can help change the plasticity of the brain,” says Sule Tinaz, MD, PhD, a Yale Medicine neurologist. “That can strengthen pathways in the brain and even create new ones, which can improve brain function.”

Dr. Tinaz and her colleagues at Yale conducted a small research study to understand how high-intensity exercise (reaching 80% of a person’s age-appropriate maximum heart rate) would impact the progression of Parkinson’s disease. They found that not only could it slow disease progression, but it also improved neuron function in the brains of participants with Parkinson’s disease.

The Parkinson’s Foundation provides an infographic and one-sheet with recommended exercises for those with the disease.

“Progress is slow in learning about and finding new approaches to Parkinson’s disease, and many changes researchers hope to see in the clinic may still be years away,” says Dr. Patel. “But today, many people live very long, full lives managing their Parkinson’s in ways that allow them to do the things they want to.”