How Does Parkinson’s Progress? End-Stage Symptoms and What to Expect

The journey with Parkinson’s disease looks extremely different from person to person. You may have a severe tremor and mood changes, while someone else experiences freezing of gait and voice changes.

“People progress at dramatically different rates and with different symptoms,” says Todd M. Herrington, MD, PhD, a neurologist and movement disorders specialist with Mass General Brigham Neuroscience Institute and a leader in deep brain stimulation (DBS) research at Mass General Brigham. “People often ask about the ‘stage’ of their Parkinson’s disease, which subtly implies that patients are all on the same road and it’s a matter of how far along you are. The reality is that each person is on a different road.”

What are the five stages of Parkinson’s disease?

The most common staging system for Parkinson’s is called the Hoehn and Yahr scale. It focuses on how the disease affects movement, such as tremor, stiffness, and balance.

Broadly, the scale describes Parkinson’s as:

• Stage 1: Movement (motor) symptoms, such as tremor, occur on one side of the body.
• Stage 2: Movement symptoms affect both sides of the body.
• Stage 3: Movement symptoms continue to worsen, possibly affecting daily activities, and balance problems develop.
• Stage 4: Movement is significantly impaired, with individuals needing assistive devices to stand or walk, and help with completing daily activities.
• Stage 5: Individuals are unable to stand or walk, confined to their bed or wheelchair, and usually need 24/7 care.

“The stages are missing a really important thing, though, which is all of the non-motor symptoms of Parkinson’s,” says Dr. Herrington. “The more important thing than diagnosing a patient’s stage is identifying what’s most bothersome to each patient and what therapies we have to make the most impact on their quality of life.”

Diagnosing end-stage Parkinson’s disease

End-stage Parkinson’s refers to more advanced stages of the disease when motor and non-motor symptoms are substantially impacting day-to-day life. Symptoms may become severe enough to require full-time support. But this change doesn’t happen overnight.

“There’s no moment when you’ve met the criteria and now you are ‘end-stage’” says Dr. Herrington. “It’s all shades of gray. It’s much more about the functional ramifications, which are sensitive to what a person needs to do in their everyday life and what kind of support they have.”

Some common signs of advanced Parkinson’s disease include:

• Dementia
• Psychosis, such as hallucinations and paranoia
• Severe balance problems that increase your fall risk

If you start to develop major cognitive or psychosis symptoms, be sure to talk with your neurologist. Medication adjustments may help control these symptoms and improve your daily quality of life.

Can you slow the progression of Parkinson’s disease?

While no cure for Parkinson’s disease exists, medications and medical devices, such as DBS therapy, can help control movement symptoms. Researchers are also actively exploring new treatment options. Dr. Herrington and colleagues at Mass General Brigham have developed a novel cell therapy, currently being tested in clinical trials, to help the brain create more dopamine.

Several rehabilitation therapies and lifestyle changes can also make a difference in how symptoms progress and how Parkinson’s affects your daily life. You can protect your health by prioritizing:

Rehabilitation therapy for Parkinson’s

Starting rehabilitation therapy early in your Parkinson’s journey helps your body build resilience against worsening symptoms, like a shock absorber. Your health starts from a stronger baseline, which gives your brain and muscles more ability to tolerate changes as cells become damaged or lost.

Depending on what symptoms affect you most, you may benefit from:

• Occupational therapy to learn personalized strategies that improve independence and help you complete daily activities more efficiently
• Physical therapy to build your strength, balance, and movement with targeted exercises
• Speech and swallowing therapy to improve your voice clarity and volume and your swallowing ability, which helps reduce your risk for food or liquid entering the lungs (aspiration) and pneumonia

“If you’re starting from a place of strength in each domain, such as balance, and Parkinson’s takes a little of your balance away, then carrying out your routine activities will still be well within your comfort zone,” says Dr. Herrington. “Whereas if you’re living a mostly sedentary life and you’re not really challenging your balance system, then it may become really challenging to do these routine activities if Parkinson’s takes a little bit away.”

Exercise for Parkinson’s disease

“There is very good evidence that exercise seems to slow the functional progression of Parkinson’s,” says Dr. Herrington, “and some evidence in animal models of Parkinson’s that exercise may even slow the degeneration or loss of brain cells.”

So, what’s the best exercise for Parkinson’s disease? The best kind is one that you stick to, according to Dr. Herrington. While many types of physical activity seem to help, a good exercise program for Parkinson’s should include:

• Aerobic exercise (cardio): Find an exercise that will get your heart rate up to a point where you’re lightly out of breath. Incline walking, biking, or swimming are a few options.
• Dynamic balance work: Activities such as yoga, tai chi, and boxing offer excellent ways to strengthen your balance.

Diet and nutrition with Parkinson’s

A well-rounded, nutrient-rich diet can also help protect your health with Parkinson’s. Approaches like extreme diets or high doses of vitamins haven’t been proven to slow disease progression. Instead, Dr. Herrington recommends following a Mediterranean diet for Parkinson’s, shopping in the outer sections of the grocery store, and avoiding processed foods.

“Less red meat, more white meat and fish. Less butter, more olive oil. Fresh fruits and vegetables and whole grains,” he says. “If you do that and you maintain good hydration, you’re probably doing the best thing you can for yourself from a diet perspective—not just for Parkinson’s, but for cardiovascular health, which is important for any organ system in your body, including your brain.”

Planning for advanced care and end of life with Parkinson’s

How you manage Parkinson’s disease as it progresses is an individual decision. It’s useful to talk with your neurologist early in the course of the disease about how you’d like to use support services and what resources are available.

Palliative care

Palliative care, including specialized neuropalliative care, can help ease pain and discomfort throughout all stages of Parkinson’s disease. It can also help you navigate non-movement symptoms, such as pain, extreme tiredness, or mood changes.

“This domain of medicine is focused on how to alleviate suffering through better pain control, but also on supporting you through changes in life circumstance and supporting your caregivers,” says Dr. Herrington. “Using these resources to help you live the best quality of life that you can is really sensible.”

Hospice care

Hospice prioritizes the comfort of you and your loved ones when the end of life is near, providing intense support during this difficult time. In addition to pain management, it supports your emotional and spiritual well-being. You may receive hospice care in your home, a hospice center, or in the hospital, depending on your needs.

Talk about your goals and wishes early

Having conversations about end-of-life care with your loved ones and your Parkinson’s disease care team is an important part of your care. Share your goals for that time, even beyond Parkinson’s disease management.

“It’s a conversation that acknowledges the reality that none of us are going to live forever, and people deserve to have agency over how they spend their last years and days,” says Dr. Herrington. “Starting those conversations earlier when you’re healthier can help you and your family think through challenges that loom larger near the end of life.”

Advanced Parkinson’s disease treatment

Despite the challenges of Parkinson’s disease, research into new treatment options continues to move forward. Scientists around the world, including at Mass General Brigham, are studying innovative approaches to managing symptoms and slowing disease progression.

Dr. Herrington is exploring cell therapies to replace lost dopamine-producing cells in the brain, as well as advanced forms of DBS to control symptoms. Talk to your neurologist about the latest breakthroughs and opportunities to participate in clinical trials for Parkinson’s disease.