We’ve got the scoop on causes, symptoms, treatments, and a ton of other facts and tips that can make life with this condition easier.
IF YOU OR a loved one has been diagnosed with Parkinson’s disease, you’re likely wondering what comes next. The answer to that question is different for every person because the course of this neurological disorder isn’t possible to predict—not everyone experiences the same set of symptoms. You may have difficulty controlling and coordinating how you move your body. You may have issues with slurred speech or being able to write things easily by hand, or even face visual challenges. To answer your pressing questions about the disease, we talked to top experts who treat PD every day. Their insights will help you better understand this condition to help you or a family member live—and even thrive—with a PD diagnosis.
What Is Parkinson’s Disease, Anyway?
Parkinson’s disease is a slow-moving neurodegenerative disease. That means that it harms the neurons, or nerve cells, in your brain over time, causing them to die. The area of the brain that PD primarily affects, called the substantia nigra, helps control and coordinate your body’s movements. As PD gets worse, it causes increasing difficulty with muscle movement, control, and coordination.
The substantia nigra produces dopamine, a chemical that is known as a neurotransmitter, which helps the brain send signals to your central nervous system and, from there, to the muscles in your body. You might know dopamine as the “feel-good chemical” in your body, but it serves other important functions, as well. The messages that dopamine carries tell the body when and how to move properly. But as PD progresses, cells in the substantia nigra begin to die. The result: less and less dopamine gets produced. The brain can no longer send clear messages to control movement, and the things you used to be able to do with ease, such as walking, getting dressed, and other daily activities, become harder to perform. People with PD also will experience symptoms not related to movement. We’ll get into those below.
Every year, approximately 60,000 people are diagnosed with PD in the U.S, where about one million people currently live with the disease. That number is expected to rise by about a quarter million by 2030 because our population is aging disproportionately, and the average age of Parkinson’s onset is 60. Though far less common, PD can affect younger people, as well. Between 10% and 20% of people with PD develop the disease prior to age 50. This is called young-onset Parkinson’s disease, or YOPD. For example, actor Michael J. Fox, a long-time advocate for Parkinson’s research, was about 30 when he began to show symptoms of the disease in 1991. Now 60, he’s lived (very well, by all accounts) with PD for three decades, making him an inspiring example to others with condition. And while there is no cure—yet—for the disease, medication can help make it a more manageable condition. In fact, most people with Parkinson’s will live a normal lifespan, according to the Parkinson’s Foundation.
What Causes Parkinson’s Disease?
This question remains mostly unanswered, though some gene mutations are responsible for an estimated 10% to 15% of cases, according to all three of our panel’s experts. While it’s clear that PD progresses as your brain produces less and less dopamine, experts still don’t fully understand what triggers dopamine loss in the first place. However, it’s widely thought to be a combination of genetics and unknown environmental factors. There is likely no single cause.
However, experts do know that the brains of people with PD show a build-up of Lewy bodies, which are clumps of a protein called alpha synuclein. Why these Lewy bodies accumulate, or how they influence disease progression, are also unknowns, but some research suggests they damage or destroy nerve cells, hampering communication between parts of the brain involved in movement. Much more research needs to be done to determine their role in PD.
Young-Onset Parkinson’s Disease vs. Late-Onset Parkinson’s Disease
While the signs of PD typically don’t reveal themselves until age 60 or later, some people do develop the disease at a younger age. When it occurs before age 50, it’s called young-onset Parkinson’s disease, or YOPD.
YOPD is treated the same way as PD that develops at a more typical age, and the symptoms are largely the same. However, there are some distinct differences. They can include:
Diagnosis may take longer, primarily because doctors don’t expect to see PD in younger patients (so they don’t look for it).
Causes are more likely to be linked to gene mutations. For example, people with a mutation in their PRKN gene have a higher risk of YOPD.
Progression of PD tends to be slower in people who have YOPD.
People with YOPD are more likely to experience involuntary movements, or dyskinesia. This occurs because of the longer time they have PD and the longer time spent taking the commonly prescribed PD drug levodopa. Another more frequent symptom in YOPD: dystonia, or painful, prolonged muscle contractions.
Parkinson’s Disease Risk Factors
Several risk factors up your odds of developing Parkinson’s disease. A few, like your age, can’t be helped or prevented. You may have more control, however, over your exposure to other possible risk factors, like illicit drug use. Here’s how it breaks out:
Turns out, the accumulation of years is the biggest risk factor for PD—the average age the disease develops is about 60, and it becomes more common with advancing age. Why? It’s not clear, but it may be that normal age-related declines increase your vulnerability to PD if you already have a higher risk due to genes and/or environmental exposures.
Though it’s not understood why, men’s risk of PD is about 50% higher than that of women. The female sex hormone oestrogen may offer women some protection against PD, possibly because oestrogen has anti-inflammatory properties, though this remains speculation.
Traumatic brain injury, such as from repeated blows to the head, is also being investigated as a possible trigger; research suggests this may increase your risk.
Mutations in several genes have been conclusively linked to PD—the SNCA gene was the first PD gene identified in this regard. We all have this gene, which produces alpha synuclein. Experts don’t know exactly what this protein does, but they do know it’s involved in Lewy bodies. Other genes, such as LRRK2 and PARK7, have been linked to both late- and early-onset PD.
Illicit drugs, including cocaine, amphetamine, and methamphetamine, have been studied as possible risks, although the evidence remains inconclusive.
Exposure to heavy metals like lead, copper, and manganese may up your odds of developing PD. Manganese, for example, may damage the substantia nigra, the brain area where dopamine is produced.
Main Symptoms of Parkinson’s Disease
No two people will experience PD in exactly the same way. For example, the disease can progress faster in some people than in others. And, while there’s a long list of possible symptoms, some folks may experience fewer of them, and others may battle a greater number of symptoms that are more severe. Unfortunately, it’s not possible to predict how the disease will affect any specific individual.
That said, there are four primary movement symptoms of Parkinson’s disease that affect nearly everyone with this condition. They are:
Bradykinesia (Slowness of Movement)
Bradykinesia is an essential feature of the disease and the most prominent symptom. Due to the diminishing amount of dopamine produced in your brain, you may find yourself taking shorter steps, or even dragging your feet when you walk. You also may swing your arms less as you walk. Everyday tasks, like buttoning a shirt or typing on a keyboard may become more difficult. Your handwriting may become smaller, and you may find that your voice is softer and less able to project. Others may notice that you smile or blink less often as your face becomes less expressive due to less muscle movement in your face.
Stiffness or Rigidity
With PD, your muscles can’t always relax as they should because the brain signals that control them get confused due to the lower levels of dopamine. Instead, they remain tense and contracted, making it difficult to move with limited range of motion. Rigidity also causes aches and pains.
Often, a tremor—which is involuntary shaking or movement—begins in one hand. It may shake subtly at first or you may find yourself rubbing your thumb and forefinger together as if you’re rolling a pill between them. These tremors usually occur when you are at rest, such as sitting in a chair, and they go away when you move.
According to a 2018 study in the journal Frontiers in Neurology, about three quarters of people with PD will experience resting tremor, while approximately 60% will have tremor when moving, called action tremor. Though not entirely understood, movement may stop the tremor because of the way that voluntary movements activate the brain, according to a 2020 study in the journal Brain Communications. They also can begin in times of stress or fatigue.
Tremors can sometimes occur in one of your feet or along your jawline, as well. Typically, tremor occurs in only one side of your body rather than both, though it may begin to affect both sides as PD progresses.
Balance and Posture Difficulties
As PD progresses to a later stage, your posture may become stooped, and you may lean forward as you walk. This happens when the part of your brain that controls automatic movements, such as those that adjust your posture to keep you standing up straight, begin to falter as a result of PD. This affects your balance and can cause you to tumble forward or fall backward.
Non-Motor Symptoms of Parkinson’s Disease
Parkinson’s disease also causes symptoms that have nothing to do with movement. The list is long—but keep in mind you likely won’t experience all of them. These symptoms include:
Cognitive difficulties, including problems with attention, memory, and spatial awareness (like accurately judging distances). Mild cognitive impairment will affect about half of people with PD. Dementia, in which cognitive impairments interfere with daily life, develops in about a third of people with PD, most often in the later stages of the disease.
Constipation that is persistent
Hallucinations from Parkinson’s disease-related psychosis, which are mostly visual and usually occur in later stages of the disease
Loss of sense of smell or taste
Mood disorders, including depression and anxiety
Orthostatic hypotension, which is a sudden drop in blood pressure when standing
REM sleep behaviour disorder, in which your arms and legs move, sometimes violently, during sleep as you act out your dreams
Urinary problems, including incontinence
It should be noted: Before hallmark motor (movement) symptoms occur, sometimes people with PD first experience frequent constipation, loss of smell (and much less frequently, taste), and/or REM sleep behaviour disorder. But those symptoms can result from other, unrelated conditions. For example, loss of smell can be caused by COVID-19, diabetes, multiple sclerosis (MS), and a host of other conditions, while chronic constipation can be caused by bowel obstructions, certain cancers, multiple sclerosis, and more. This makes it tough to recognize and diagnose PD before motor symptoms set in.
How Is Parkinson’s Disease Diagnosed?
To get an accurate diagnosis, the ideal physician to consult is a neurologist who specializes in movement disorders like Parkinson’s. There are no definitive blood tests or other tests that doctors can use to diagnose PD. Instead, you’ll undergo any of the following:
You and your doctor will have a detailed discussion about any symptoms you’re experiencing, your current health, and any medications you are taking. You’ll also talk about your health history, which may offer your doctor some clues. Your doctor may also order tests for conditions unrelated to PD to rule out other diseases that could explain your symptoms.
Your doctor also will perform a neurological exam that involves observing you during your discussion. Your doctor will look for signs of PD, which include:
Fewer eye blinks than normal
Lack of facial expression
Trouble maintaining your posture
Speech difficulties, such as talking softly and/or slurring your speech
You will also be asked to perform certain tasks that will help demonstrate if you have the key PD symptoms: tremor, bradykinesia (slowness), rigidity, and balance/posture troubles. Here are a few of the many things you may be asked to do:
Demonstrate your handwriting. Very small handwriting is a sign of bradykinesia, or slow movement.
Repeatedly tap your index finger to your thumb, while keeping the two as wide apart as possible (like you’re making the “OK” hand gesture), which allows your doctor to see if your movements are slower than normal.
Get up from a chair, walk, and perform other movements to identify PD-related difficulties such as balance problems or reduced arm swings when walking.
Relax your hands on your thighs so your doctor can observe any resting tremors.
Additional Diagnostic Options for Parkinson’s Disease
Sometimes, the symptoms of PD are not as tell-tale as your doctor would like, making it hard to confirm that PD is what you have. In such cases, when your doctor suspects PD but can’t be certain, options exist to help confirm the diagnosis. They include:
Short for dopamine transporter scan, this test involves the injection of a small amount of a radioactive substance into your blood. It works its way into your brain and attaches to dopamine transporters, which are responsible for carrying dopamine. Because people with PD have less dopamine in their brains, it makes sense that they’d also have fewer dopamine transporters. A non-invasive scanner produces an image of your brain to give your neurologist these important clues to help confirm or reject a PD diagnosis.
This is the medication most commonly prescribed for PD, and we’ll describe it in more detail momentarily. It helps your brain produce more dopamine in order to reduce movement difficulties caused by the disease. If you have PD, your symptoms likely will improve on this drug. By the same token, you won’t see improvements if your symptoms are caused by another condition. So, levodopa can be prescribed to help doctors know either way.
Parkinson’s Disease Treatment
Everyone with PD experiences the disease in a different way, so treatment is also highly individualized. In general, the mainstay treatment is medication to reduce PD symptoms. However, in the disease’s earlier stages, you may not require medications at all. It all depends on your symptoms and how much they interfere with your daily life.
In a 2019 study in the journal PLOS One, more than a third of people with newly diagnosed PD did not receive medication. The study authors suggest that this could be because their symptoms had not become severe enough to require treatment, though it may also have been due to lack of access to care. Eventually, though, you will almost certainly need medication to manage the disease.
While PD medications won’t cure PD, they will help you live with it. Lifestyle improvements, especially exercise, also play a significant role in managing your PD.
Parkinson’s Disease Medications
There are a number of medications that have been shown to be effective for treating the many symptoms of PD. Not everyone needs the same mix of drugs, as PD symptoms vary, too. These medications can include:
This drug enters your brain, where nerve cells in the basal ganglia convert it into dopamine to replace dopamine lost to PD. It’s the most effective drug available to treat the movement symptoms of PD. Levodopa is usually combined with another drug called carbidopa. Without carbidopa, your body would convert levodopa into dopamine before it reached your brain, making it much less effective. Carbidopa, in other words, is the transporter, getting your medication to where it needs to go. Carbidopa also prevents or reduces some of levodopa’s side effects, such as nausea and vomiting and low blood pressure. This combo, levodopa/carbidopa, is the most prescribed medication for PD. It is sold as brand names such as Rytary and Sinemet.
For most people on levodopa, the drug will relieve symptoms effectively for several years. However, as the disease progresses, your dose may not be effective for as long as you’ve been used to, and your symptoms may worsen between doses. Your doctor may recommend more frequent, smaller doses of the drug to counter this. On unpredictable occasions, your medication suddenly may have no effect at all, only for it to start controlling your symptoms again following a later dose. These fluctuations are called “on-off” periods.
Levodopa can have significant side effects. You and your doctor will determine what dose works best to control your symptoms while minimizing such side effects as:
Blood pressure changes
Hallucinations and, more rarely, delusions
Involuntary movements called dyskinesia
Nausea and vomiting
If you have psychotic side effects from Parkinson’s disease, such as visual hallucinations, confusion, or delusions, you may benefit from adding an antipsychotic medication rather than discontinuing levodopa.
This is a class of drug that’s generally less effective than levodopa for most people, but they may be prescribed if you can’t tolerate levodopa or it doesn’t work well enough for you. Dopamine agonists imitate dopamine so that your brain acts like its dopamine needs are being met, thus reducing PD symptoms. Some doctors prescribe them before levodopa, depending on the severity of symptoms. Dopamine agonists include:
Many of the side effects of these drugs are similar to those of levodopa. You may also experience sleepiness, sudden onset of sleep, and oedema, or swelling, in your legs.
These drugs help prevent an enzyme called monoamine oxidase B from breaking down dopamine in your brain. That allows you to maintain a higher level of dopamine, relieving movement symptoms. Such drugs include Azilect (rasagiline) and Eldepryl (selegiline). These drugs may be prescribed on their own or with levodopa. Side effects may include:
Hallucinations (not common)
Other drugs may be used alone or in combination with some of the above to manage your symptoms. For example, if you or a loved one has been diagnosed with Parkinson’s disease-related psychosis, the antipsychotic drug Pimavanserin (Nuplazid) is sometimes prescribed for PD patients who experience frequent hallucinations or delusions.
Procedures, Including Surgery, for Parkinson’s Disease
Some procedures can help manage some of the symptoms of Parkinson’s disease, sometimes for years. They include:
Deep Brain Stimulation (DBS)
This is the most common surgery performed for PD. More than 150,000 procedures are performed worldwide each year. An implanted device painlessly stimulates parts of your brain in order to block the signals that cause movement symptoms. Electrodes are placed in your brain, and a device called an impulse generator is implanted either under your collarbone or in your abdomen. They are connected by wires placed under your skin.
You’re likely to benefit from DBS if your symptoms have been improved by levodopa but now suffer from disabling symptoms no longer controlled by that medication. While it can provide very substantial improvements in movement symptoms, it will not alleviate non-motor symptoms like speech problems, depression, or dementia.
Like medications, DBS neither cures PD nor slows its progression. Its benefits typically last at least five years, but eventually symptoms likely will return as the disease progresses.
This non-invasive surgery aims to reduce tremor by destroying a part of the brain involved in tremor. Guided by magnetic resonance imaging (MRI), ultrasound beams target trouble spots. The procedure is done while you are awake. Currently, focused ultrasound is FDA-approved only for the treatment of Parkinson’s tremor, but it eventually may prove useful for other PD symptoms, as well.
What’s Life Like with Parkinson’s Disease?
There’s plenty that you can do to live well despite your PD. Try some of these feel-good practices:
First and foremost is exercise, which could really be considered a treatment itself. Regular movement is good for everyone, but for people with Parkinson’s disease, exercise offers particular benefits. It may slow the progression of the disease and improve movement and other symptoms, including depression and cognitive impairments like memory problems. Put simply, it will improve your quality of life. And, it may be particularly beneficial for people who start exercising right after diagnosis rather than putting it off until the disease has progressed significantly. All types of exercise offer benefits:
Aerobic exercise. Great for people with PD, aerobic exercise is the kind that gets your heart pumping, like walking, running, dancing, cycling, and swimming. In addition to helping you maintain overall fitness, exercises like walking, for example, help improve your gait, or how you walk, while dancing can help with balance and movement speed. Cycling on a stationary bike has shown improvement in both motor function and coordination.
Balance, agility, and flexibility. All can help counter motor problems. Try yoga, tai chi, and/or dance.
Boxing. An aerobic exercise, boxing may have multiple benefits, including improved balance, coordination, and speed. Don’t worry. This is non-contact, so you won’t be trading punches in the ring. Instead, you’ll focus on punching bags and hitting targets, such as a trainer’s gloved hands, along with other exercises. (And even folks with mobility issues have been documented doing it, some from their wheelchairs.) A popular program is called Rock Steady Boxing. According to a 2019 study in the journal Frontiers in Neurology, there’s some positive research that suggests boxing can be effective for people with PD, the evidence that it truly helps remains limited, and it’s not yet known whether it’s safe.
Strength-training. According to 2019 study in the journal Geriatrics & Gerontology International, strength-training twice a week for six months improved both walking speed and balance in people 60 and older with PD. Think muscle-building exercises like weightlifting, body weight exercises (push-ups, squats, sit-ups), and resistance bands.
You and your doctor will have to determine what exercises—and how much exercise—suits you best. If you’re not accustomed to regular exercise, you should start slowly and build up your stamina. You may benefit from working with a physical therapist, who can identify challenges you may have and design exercises to overcome them or work around them.
Like exercise, a healthy diet’s a good thing no matter what. But people with PD benefit from a diet that’s high in fibre—think whole foods, fruits and veggies, plus whole-grain breads—as fibre can help ease the constipation that often accompanies the disease. Drinking plenty of fluids, especially water, throughout the day can help counter constipation, as well.
As mobility problems worsen, falls become a bigger risk. You can reduce that risk by carefully arranging your home. A physical therapist can help you determine what adjustments will make your home as safe for you as possible. Here are a few fall prevention measures to consider:
Add grab bars and non-skid tape in the bathtub/shower.
Install rails on both sides of your stairs.
Consider limiting activities to your first floor to avoid stairclimbing.
Keep things well-lit so you can see where you’re going.
From all you’ve read, you know now that Parkinson’s disease affects every person differently. The good news is that there are treatment options available that can help you manage your symptoms, no matter how varied they are, and often for many years. Talk to your doctor about additional help if you feel you might benefit from support groups in your community. Or check out these resources from the Parkinson’s Foundation.