Caring for a Parent with Parkinson's

Your parent has been diagnosed with Parkinson's disease. Maybe you noticed the tremor first, or the shuffling walk, or how their voice got quieter. Now you're facing a progressive condition that affects movement, balance, and often mood and cognition.

Parkinson's caregiving has unique challenges, but with knowledge and support, you can help your parent live well for many years after diagnosis.

Understanding Parkinson's Disease

Motor Symptoms

• Tremor: Shaking, usually starting in one hand, often at rest
• Bradykinesia: Slowness of movement—harder to initiate and complete actions
• Rigidity: Stiffness in arms, legs, or trunk
• Postural instability: Balance problems, often in later stages
• Gait changes: Shuffling walk, smaller steps, freezing episodes
• Reduced arm swing: Less movement when walking
• Facial masking: Less expression, appearing emotionless

Non-Motor Symptoms (Often Overlooked)

• Depression and anxiety: Very common, often before motor symptoms
• Sleep problems: Insomnia, vivid dreams, daytime sleepiness
• Cognitive changes: Slower thinking, memory issues, some develop dementia
• Constipation: Often severe
• Low blood pressure: Dizziness on standing
• Urinary problems: Urgency, frequency
• Loss of smell: Often one of the earliest symptoms
• Fatigue: Exhaustion beyond what symptoms explain
• Soft speech: Quiet voice, hard to hear
• Swallowing difficulties: Increases aspiration risk

Medication Management

Why Timing Matters

Parkinson's medications (especially levodopa) must be taken on a precise schedule:

• Timing affects how well symptoms are controlled
• Late doses can cause severe "off" periods (symptoms return suddenly)
• Protein in food can interfere with absorption
• Set alarms and use pill organizers

Common Medications

• Levodopa/Carbidopa (Sinemet): Most effective; converted to dopamine in brain
• Dopamine agonists: Mimic dopamine (pramipexole, ropinirole)
• MAO-B inhibitors: Prevent dopamine breakdown
• COMT inhibitors: Extend levodopa effect
• Amantadine: Can help with dyskinesia (involuntary movements)

Medication Side Effects to Watch

• Dyskinesia: Involuntary writhing movements (from long-term levodopa use)
• Impulse control: Gambling, compulsive shopping, hypersexuality (especially dopamine agonists)
• Hallucinations: Especially in advanced disease
• Orthostatic hypotension: Dizziness on standing
• Nausea: Take with crackers or light snack (not protein)

Fall Prevention

Falls are the biggest safety concern in Parkinson's. Prevention strategies:

Home Modifications

• Remove loose rugs and clutter
• Install grab bars in bathroom
• Ensure good lighting everywhere
• Remove threshold strips between rooms
• Use night lights in hallways and bathroom
• Consider a hospital bed with rails if needed

Movement Strategies

• For freezing: Use visual cues (step over a line, march to music)
• When turning: Take small steps, don't pivot
• When standing: Pause before walking, don't rush
• Use a walker: When gait becomes unstable
• Physical therapy: Essential for maintaining mobility

Orthostatic Hypotension

• Rise slowly from sitting or lying
• Sit on the edge of bed before standing
• Compression stockings may help
• Stay hydrated
• Small, frequent meals (large meals lower blood pressure)

Daily Care Challenges

Eating and Swallowing

• Sit upright for meals and 30 minutes after
• Smaller bites, slower eating
• Thicker liquids may be easier to swallow
• Watch for coughing or choking
• Speech therapy can help with swallowing
• Consider protein at dinner (interferes less with medication)

Communication

• Speech therapy (especially LSVT LOUD program)
• Face them when speaking
• Be patient—wait for them to finish
• Ask yes/no questions when speech is difficult
• Remember: reduced expression doesn't mean reduced emotion

Constipation

• Very common and uncomfortable
• High fiber diet, lots of fluids
• Exercise helps
• May need daily stool softeners or laxatives
• Don't let it go untreated—can cause significant problems

Cognitive Changes and Dementia

Not everyone with Parkinson's develops dementia, but cognitive changes are common:

• Executive function: Difficulty planning, organizing, multitasking
• Processing speed: Thinking becomes slower
• Memory: Retrieval problems (cueing helps)
• Parkinson's disease dementia: Develops in about 50% eventually, usually after years of motor symptoms

Hallucinations and Delusions

• Often a side effect of medications
• Can also be part of disease progression
• Typically visual: seeing people or animals that aren't there
• If benign, may not need treatment
• If distressing, medications can help (but avoid typical antipsychotics)

Care Through the Stages

Early Stage

• Symptoms on one side, minimal impact on daily life
• Focus on exercise, staying active, medication education
• Start planning: legal documents, future care wishes

Middle Stage

• Both sides affected, balance may be impaired
• May need help with some activities
• Medication fluctuations become more common
• Consider occupational therapy for home safety

Advanced Stage

• Significant assistance needed for daily activities
• May use wheelchair
• Swallowing and speech significantly affected
• Cognitive changes more pronounced
• Consider hospice when appropriate

Caring for Yourself

• Parkinson's caregiving can last many years—pace yourself
• Join a Parkinson's caregiver support group
• Accept help and respite
• Don't wait until you're burned out to seek support
• Parkinson's Foundation has resources specifically for caregivers