• The Parkinson’s disease (PD) staging system is a helpful tool to track movement-related symptoms and to monitor disease progression.
• People with advanced Parkinson’s are typically in stages 4 or 5, at which point symptoms have become severe and limiting.
• Effective treatment options are available for people with advanced Parkinson’s.

Parkinson’s disease is a neurological movement disorder that changes and often progresses the longer someone has it. There are several ways to assess and monitor disease progression of Parkinson’s. One of those ways is to understand the five stages of Parkinson’s.

It is important to note that everyone with Parkinson’s experiences their own unique symptoms and disease progression. No two people will have the same Parkinson’s journey. A person can develop advanced Parkinson’s disease after many years, or they may experience a faster disease progression.

The Five Stages of Parkinson’s

The Parkinson’s staging system is based on the Hoehn and Yahr scale introduced in 1967. The Hoehn and Yahr system focuses on disability caused by motor symptoms such as bradykinesia (slowed movements), tremor, and loss of balance. Neurologists use the scale to track motor (movement) symptoms and also monitor disease progress.

As each stage number increases, this generally accounts for more impairment, along with increased difficulty with daily activities.

Stage 1

During this early stage of Parkinson’s disease, people show mild symptoms that usually do not get in the way of their daily routines. Tremor, stiffness, and bradykinesia happen on only one side of the body.

In addition, a person with stage 1 Parkinson’s may also have:

• Difficulty with balance
• Trouble moving their legs and arms while walking
• Decreased facial expression (hypomimia)

Stage 2

Symptoms begin to worsen during stage 2, spreading from one side of the body to both sides. There may be difficulty walking and changes in posture, facial expression, and voice.

Individuals with stage 2 Parkinson’s can typically still live by themselves. However, daily tasks may become more difficult and time-consuming.

Stage 3

Loss of balance and bradykinesia are the most common symptoms of this stage of Parkinson’s. Individuals at stage 3 are likely to experience falls.

People who are at stage 3 of Parkinson’s can typically still carry out their daily activities by themselves, but their symptoms cause greater impairment with tasks like eating and getting dressed.

Stage 4

This stage marks the beginning of advanced-stage Parkinson’s disease. At this point, Parkinson’s symptoms have become limiting and severe. Individuals in stage 4 may be able to stand without any help, but movement throughout the home often requires a walker.

In addition, those in stage 4 typically need assistance with all of their activities of daily living. They are not usually able to live by themselves.

Stage 5

This is the most severe stage of neurological dysfunction in Parkinson’s. Rigidity (stiffness) can keep a person with stage 5 Parkinson’s from being able to either stand or walk. Individuals in this stage typically need a wheelchair to get around, and they may be bedridden.

In this advanced stage, people will require constant nursing care for all of their daily activities. In addition, they may experience many nonmotor symptoms, such as delusions and hallucinations.

Another Tool for Tracking Parkinson’s Progression

Some neurologists also use the Unified Parkinson’s Disease Rating Scale (UPDRS) to track the symptoms of Parkinson’s. The UPDRS is a more extensive tool that also checks nonmotor symptoms, such as:

• Mental function
• Mood
• Sleep problems
• Pain
• Urinary problems
• Constipation
• Lightheadedness upon standing
• Fatigue

Members of MyParkinsonsTeam have discussed a wide range of experiences when it comes to how their condition progresses. “I was diagnosed with PD in 2003, and my symptoms did not advance significantly until 2019,” one member wrote. Another said, “My PD has advanced slowly and I feel pretty good most of the time.”

By understanding the stages and progression of Parkinson’s, you can anticipate and better navigate your Parkinson’s journey.

Navigating Advanced Parkinson’s Disease

Apart from neurological dysfunction, people with advanced-stage Parkinson’s may develop other problems.

Decreased Response to Medication

People with advanced Parkinson’s disease have likely been taking their medications for a long time. This means they are at risk for experiencing a wearing-off effect of their medication.

Parkinson’s research shows that this may happen for the following reasons:

• The brain loses cells that make dopamine (the neurotransmitter involved in Parkinson’s disease). The brain can no longer store as much of the drug as it did, so the medication lasts for a shorter period of time.
• Delayed gastric emptying can be a symptom of Parkinson’s, which means food can linger in a person’s stomach for long periods of time. This delay can limit the amount of oral medication absorbed into the bloodstream.

When someone with advanced Parkinson’s disease no longer responds well to medications taken by mouth, their doctor may recommend injectable or infused medications to manage the symptoms.

Dyskinesia

Long-term use of the drug levodopa — used to treat Parkinson’s motor symptoms — may lead to a movement disorder called dyskinesia. It’s important to understand some of the facts about dyskinesia:

• It is uncontrolled.
• It can involve just one part of the body or the entire body.
• It can manifest as swaying, writhing, or fidgeting.
• It can often happen when tremor, stiffness, and slowness are controlled.
• It can appear when someone is excited or emotionally stressed.
• It can be painful and can impair activities of daily living.

When a person with advanced Parkinson’s disease experiences dyskinesia, they should consider discussing the following treatment options with their doctor:

• Altering the dose or timing of their levodopa — This can help you get enough of a dose to help your symptoms while avoiding taking too much to cause dyskinesia.
• Changing to a different medication — If levodopa is causing dyskinesia, your doctor might recommend switching to a different formulation or changing your medication completely.
• Adding apomorphine (Apokyn) — This injectable or infused medication can help you manage the symptoms you experience during levodopa’s “off” periods.
• Adding amantadine (Gocovri) — This drug works on a different pathway to help decrease dyskinesia.

Talk With Others Who Understand

MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 89,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.

How has your Parkinson’s progressed? Share your experience in the comments below, or start a conversation by posting on your Activities page.