The Variability of Parkinson’s: What to Expect and How to Manage Symptoms

Parkinson’s disease (PD) is a progressive disease of the brain. In healthy brains, cells called neurons make a chemical called dopamine. Dopamine helps coordinate movement. People with PD have less dopamine because their neurons start dying.¹

A low dopamine level causes tremor, slow movement, and problems with balance. Current treatments for PD only manage symptoms as there is no cure.¹

Everyone is different

PD affects people differently. The disease affects motor skills, or your ability to physically move. Exactly how and to what extent your mobility is impacted varies.^1-3Non-motor symptoms occur too. Non-motor symptoms, such as memory problems and anxiety, vary between people just like motor symptoms do.^1-3

PD symptoms worsen over time. PD advances slowly in some while others are quickly debilitated. Some studies show that symptoms move from limiting to disabling within 3 to 7 years. It is hard for doctors to predict when PD symptoms will develop and how bad they will get.^1,4

What are the stages?

Doctors may use scales to rate your symptoms. There are scales to assess non-motor symptoms, but assessing motor symptoms is more common. The Hoehn and Yahr scale measures the effect of motor symptoms on mobility. The level of disability is measured in stages.^2-7

The stages include:^2,5-7

• Stage 1 – One-sided motor symptoms. Examples include a tremor in one hand or stiffness in one leg. Some people have changes in posture or facial expressions. Symptoms may be hard to notice. There is little impact on mobility. Some people skip this stage.
• Stage 2 – Motor symptoms on both sides of the body. Previous symptoms may worsen. Daily tasks may take longer as movement is slower. Problems with speech and posture may appear or worsen.
• Stage 3 – Balance is affected. You may feel unsteady on your feet or have a hard time pushing up from a sitting position. Reflexes slow. You can still do daily tasks by yourself.
• Stage 4 – Symptoms are so bad you may not be able to safely live alone. You need help with tasks like brushing your teeth or getting dressed.
• Stage 5 – You may not be able to get out of bed or walk by yourself. Falling is a risk. You may need a wheelchair.

You may read about stage 0 (no symptoms of PD) or an intermediate stage like stage 1.5. These are additions to the original Hoehn and Yahr scale. Intermediate stages describe a mix of disabilities from 2 stages.⁵

Not everyone experiences all stages of the Hoehn and Yahr scale. You may skip stages or be a mix of 2 stages. You may also move from stage to stage at a different pace compared to others. The variability of PD progression makes it difficult to predict the severity and timeline of symptoms.^2,7-8

Ways to ease symptoms

Drugs to boost dopamine levels are common for motor symptom management.⁸

Other ways to ease motor and non-motor symptoms include:^9-11

• Eat healthy foods – Eat a well-balanced diet with fruits, vegetables, and whole grains. Include foods with antioxidants. These include berries, nuts, bell peppers, and green leafy vegetables.
• Exercise – Move regularly. Many people with PD benefit from walking, dancing, yoga, or swimming. Exercise can help your flexibility and build strong muscles and bones. Exercise may also help ease non-motor symptoms.
• Manage drugs and symptoms – Drugs for PD must be taken on time to control symptoms. Try setting an alarm as a reminder to take your pills. Consider keeping a symptom journal. Keep track of how you feel and share this with your doctor. This information can help your doctor better manage your PD.
• Decrease pain – Some people with PD have burning or aching pains. Numbness is also reported. Try heat or ice, massage, or light stretching exercises to ease discomfort. Acupuncture has also been helpful for some. Physical therapy may be helpful. Ask your doctor about using physical therapy to ease pain related to PD.
• Make daily activities easier – As PD progresses daily tasks like putting on socks or combing your hair may be tough. Occupational therapy may help. Occupational therapists help you overcome physical limitations from PD by teaching you new ways to perform tasks. Ask your doctor about occupational therapy.
• Lessen your difficulty with eating, swallowing, or talking – 3 out of 4 people with PD have trouble swallowing. This makes eating difficult. Your voice may also soften. A speech-language pathologist (SLP) may be useful. SLPs are healthcare professionals that help to improve speech, voice, and swallowing issues. People reported that taking PD drugs and seeing SLPs eased symptoms the most. Ask your doctor for more information on SLPs.
• Sharpen your memory – Many people with PD notice changes in their ability to think clearly. Keep your mind sharp by reading, doing crossword puzzles, and playing card games.
• Stay on top of depression – Many people feel depressed, anxious, or hopeless as PD gets worse. Meditation, yoga, and music may improve mood. Also, reach out for help. Talk to a counselor or spiritual leader. This may help you work through difficult feelings.

Treatment goals

The goal is to maintain mobility and independence as long as you can. As your PD worsens, ways to manage symptoms may change. For example, you may be able to keep a symptom journal and do occupational therapy at stages 1 and 2 but not at stages 3 and beyond.

Your management plan will vary in response to your PD symptoms. Work with your doctor to make a treatment plan best suited for you.