Parkinson’s Disease Stages

Understanding Parkinson's disease stages can help you prepare for what's ahead and ensure you've got all bases covered for symptom management and quality of life, whether it's you or your loved one who's been diagnosed with this progressive neurological condition. But information about the five stages of Parkinson's disease should be taken with a grain of salt, experts say.

"The rate of Parkinson's progression varies considerably from person to person and there is no reliable timetable that tells us when a particular individual will develop specific symptoms," says neurologist Daniel Truong, M.D., medical director of the Truong Neuroscience Institute at MemorialCare Orange Coast Medical Center in Fountain Valley, CA, and editor in chief of the Journal of Clinical Parkinsonism and Related Disorders.

So while understanding the characteristics of each stage can be useful for getting a big picture of the disease and its progression, keep in mind that symptoms don't always appear in the same order and many people with Parkinson's disease remain active and independent for years after their diagnosis, Dr. Truong adds.

What Are the Five Stages of Parkinson's Disease?

The Hoehn and Yahr scale was first published in 1967 to differentiate five stages of Parkinson's disease according to motor symptoms and functional disability. "Early-stage Parkinson's disease, or stages 1 and 2, generally involves symptoms on one or both sides of the body while balance remains relatively preserved," explains Dr. Truong. "Stage 3 is characterized by clinically apparent balance problems, while stages 4 and 5 represent increasingly severe limitations in independent mobility."

Stage 1 Parkinson's Disease: Mild Symptoms on One Side

Stage 1 Parkinson's symptoms can be subtle and may initially look like ordinary changes associated with aging. "A person might move a little more slowly, feel somewhat stiff, have smaller handwriting, or notice that one arm does not swing as much while walking," says Dr. Truong. "These changes can easily be attributed to aging, arthritis, fatigue, or simply 'slowing down.' What raises suspicion for Parkinson's is that symptoms are often asymmetric (more noticeable on one side) and gradually progressive."

Other possible non-motor symptoms during this stage include:

• A resting tremor
• Constipation
• Handwriting changes
• Loss of smell
• Reduced facial expression
• Sleep disturbance
• Softer voice

Mobility Support During Stage 1

Some studies suggest that intensive physical activity during the early stages of Parkinson's disease can improve motor functions and delay symptom progression. A physical therapist (PT) can help you get started on the most appropriate exercise regimen for you—before significant mobility loss occurs.

"Regular exercise should always be part of a Parkinson's treatment plan," says Dr. Truong. "This may include walking when safe, strength training, balance exercises, stretching, or aerobic exercise appropriate to the person's abilities. Physical therapy can help modify the program as Parkinson's progresses."

Stage 2 Parkinson's Disease: Symptoms Affect Both Sides

By stage 2, symptoms affect both sides of the body, so movement and everyday activities may become more difficult. However, Dr. Truong notes that people in this stage generally still have enough balance and mobility to remain independently mobile.

You may notice the following symptoms during this stage:

• Bradykinesia (slowness of movement) on both sides of the body
• More noticeable changes in posture and walking (e.g. shuffling)
• More noticeable facial expression and speech changes
• Reduced arm swing
• Rigidity
• Tremor

Making Movement Easier in Stage 2

While individual circumstances vary, Dr. Truong says most people at stage 2 can still live independently. "Significant postural instability has not yet developed, which is an important distinction from stage 3," he says. Working with a physical therapist who has experience helping people with Parkinson's disease can delay symptom progression and support your ability to maintain independence.

Stage 3 Parkinson's Disease: Balance Problems Become More Noticeable

Postural instability becomes clinically apparent at stage 3, which increases fall risk. "The automatic reflexes that normally help a person correct their balance after a stumble, turn, or unexpected movement become less effective," says Dr. Truong. "At the same time, Parkinson's disease can cause shorter steps, stiffness, slower reactions, difficulty turning, and freezing of gait. These problems can combine to make falls more likely."

Someone with Parkinson's disease may find the following everyday tasks more difficult during stage 3:

• Bathing
• Cooking
• Dressing
• Eating
• Leaving the home

When to Consider a Walker or Rollator

Although stage 3 Parkinson's is often a time when people look for additional mobility support, stage alone should not be used to determine the purchase of a mobility aid, says Melissa Werz, OTD, OTR/L, an occupational therapy doctorate program instructor at Duke University School of Medicine, Durham, NC, who regularly works with Parkinson's disease patients.

If you're thinking about a walker or rollator for yourself or your loved one, the first step is to have a mobility assessment. "An occupational therapist completes a thorough evaluation with every client which is what helps inform their clinical reasoning far more than stage number," Werz says. "No matter where the client is in the disease process, an occupational therapist will meet them where they are at and tailor their approach to their specific needs. For instance, someone in stage 1 may need less equipment or movement cues than someone in stage 3."

In general, if walking ability has been affected to the point where balance and fall risk are significant concerns, a device like a rollator may help someone with Parkinson's maintain a more fluid gait.

Stage 4 Parkinson's Disease: Significant Mobility and Daily Living Challenges

Stage 4 of Parkinson's disease indicates severe motor disability. According to Dr. Truong, significant bradykinesia, rigidity, freezing, and balance impairment in this stage can make the following daily tasks more challenging:

• Bathing
• Cooking
• Eating
• Getting dressed
• Getting in and out of a bed or a chair
• Moving safely around the home
• Using utensils
• Writing

Despite these challenges, whether someone can live independently depends on much more than Parkinson's disease stage. "Cognition, frequency of falls, ability to manage medications, swallowing problems, blood-pressure issues, home layout, and access to family or other support are all important considerations," says Dr. Truong.

Home and Mobility Equipment that May Help

Dr. Truong points out that while stage 4 means severe motor disability, it doesn't necessarily mean not being able to walk without support. "Many people can still stand and walk, even though doing so may be slower, harder, and less safe," he says.

For people with stage 4 Parkinson's disease, mobility aids can make a difference. The right mobility option depends entirely on your particular challenges; someone struggling with freezing or balance problems may benefit from different mobility devices than someone facing muscle weakness, difficulty transferring, or trouble with everyday activities. "The goal is to make the home safer without unnecessarily limiting activity or independence," says Dr. Truong.

Mobility equipment that may be helpful inside the home includes:

• Bedrails or transfer aids
• Grab bars and handrails, particularly in bathrooms and on stairs
• Raised toilet seats
• Shower chairs or benches
• Adjustable lift chairs with arm rests

Additionally, a rollator or other mobility aid may provide greater stability and help preserve independence while a wheelchair or transport chair may be useful for longer distances or situations in which walking becomes too difficult or exhausting.

"Removing loose rugs and clutter and improving lighting can be just as important as adding equipment," adds Dr. Truong.

Stage 5 Parkinson's Disease: Advanced Mobility and Care Needs

Stage 5 is the most advanced Parkinson's disease stage, also referred to as end-stage Parkinson's and characterized by physical impairment that can be extremely challenging and the need for around-the-clock nursing care. It may be impossible to stand or walk due to severe stiffness in the legs, meaning it's common to be bedridden or confined to a wheelchair.

Planning Care in Advanced Parkinson's

Someone with advanced Parkinson's can find sitting, standing, and walking challenging, meaning they have very different care needs than someone in the early stages of the disease. Round-the-clock care may be required, either in the home, an assisted living facility, or a nursing home.

Someone living with stage 5 Parkinson's disease should have a discussion with loved ones and healthcare providers to ensure all decisions regarding legal arrangements, goals of care, and preferred treatment settings are clear.

Are There Parkinson's Symptoms Before Stage 1?

Sometimes, there are signs of Parkinson's disease years before the classic movement symptoms become obvious enough to meet diagnostic criteria—a period often called the prodromal or pre-motor phase. "Possible early features include reduced sense of smell, constipation, REM sleep behavior disorder (acting out dreams during sleep), depression or anxiety, and subtle autonomic symptoms such as light headedness when standing," says Dr. Truong. He adds that very subtle changes in movement, handwriting, voice, facial expression, or arm swing may also emerge as the disease approaches its clinically recognizable stage.

How Doctors Measure Parkinson's Progression

Although the Hoehn and Yahr scale allowed physicians a tool for evaluating Parkinson's disease, Dr. Truong says that because it focuses primarily on motor disability, it does not adequately capture important non-motor symptoms such as cognitive changes, depression, sleep disorders, and autonomic symptoms in the progression of the disease. "For that reason, clinicians and researchers often use more detailed tools, such as the Movement Disorder Society–Unified Parkinson's Disease Rating Scale (MDS-UPDRS), alongside Hoehn and Yahr staging," he says.

"The MDS-UPDRS is one of the main standardized tools clinicians and researchers use to assess the severity and impact of Parkinson's disease," says Dr. Truong. It evaluates four main areas:

• Non-motor experiences of daily living. Cognition, mood, sleep, urinary symptoms, constipation, fatigue, pain, and other non-motor issues.
• Motor experiences of daily living. How tremor, walking, dressing, eating, speech, and other motor symptoms affect everyday life.
• Motor examination. A clinician evaluates features such as speech, facial expression, rigidity, hand and finger movements, rising from a chair, gait, freezing, posture, balance, and tremor.
• Motor complications. Problems related to treatment, particularly dyskinesias and "off" periods (when medication wears off and symptoms return or worsen between doses).

"Items are generally scored from 0 to 4, with 0 indicating no problem or normal function and 4 indicating severe impairment," explains Dr. Truong. "Doctors can repeat the assessment over time to monitor changes. An increasing score generally indicates a greater disease burden, although medication timing, temporary illness, fatigue, and other factors can influence an individual assessment."

Signs That Parkinson's Care Needs May Be Changing

A change in Parkinson's disease care is often needed when things that were previously manageable become difficult or unsafe, such as:

• Getting dressed
• Living safely at home
• Swallowing
• Taking medications correctly
• Walking

"This does not necessarily mean the Parkinson's disease has suddenly become much worse," notes Dr. Truong. "It may simply mean that the treatment or support plan needs to be reassessed." That reassessment could lead to a medication adjustment, physical or occupational therapy, speech or swallowing therapy, a mobility aid, home-safety modifications, or additional caregiving support, he adds.

On the other hand, a sudden deterioration over days, rather than gradual change over time, deserves prompt medical evaluation because an infection, dehydration, medication effect, or another acute illness may be responsible.

Living Well at Every Stage of Parkinson's Disease

Whatever stage of Parkinson's disease you or your loved one is experiencing, Dr. Truong emphasizes the importance of staying active, treating symptoms proactively, and adapting as needs change. These tips can help you delay further disease progression and keep living well:

• Stay ahead of changes. Tell your Parkinson's care team about new freezing, falls, wearing-off, dyskinesias, swallowing problems, hallucinations, cognitive changes, or other new symptoms. Don't assume that every new problem simply has to be accepted as part of Parkinson's disease. Treatment can often be adjusted.
• Make safety a priority to support independence. Modify the home to prevent falls, remove trip hazards, improve lighting, install grab bars or railings, and use a cane, walker, rollator, or wheelchair when appropriate. Using assistance is not giving up independence—it can be a way of preserving it.
• Stay engaged with life. Maintain social relationships, hobbies, family activities, good nutrition and sleep, and attention to emotional and cognitive health. Parkinson's affects much more than movement, so good care should address the whole person.

Above all, remember that although clinicians developed a scale to evaluate the stages of Parkinson's disease, every person is unique. How your neighbor progressed with Parkinson's may be very different than your experience. The more proactive you are in managing the disease, the longer you will be able to keep living life fully, on your terms.