AHHC-LOGO-XS
Call Us
(619) 736-4677

Parkinson’s Disease Care at Home: A Comprehensive Guide for Families

Blogs All Heart Home Care Parkinson 3(1440 x 1024 px)

When your dad’s hand started trembling at dinner, you assumed he was just tired.

When he began shuffling instead of walking, you thought maybe his back was bothering him.

When he couldn’t button his shirt anymore, you finally took him to the neurologist.

The diagnosis: Parkinson’s disease.

Suddenly, you’re facing questions you never expected:

  • How fast will this progress?
  • Can he stay at home?
  • What kind of help will he need?
  • What can we do to slow this down?

You’re not alone in asking these questions. Parkinson’s disease affects over 1 million Americans, with nearly 90,000 new diagnoses every year — and that number is growing as our population ages.

But here’s what many families don’t realize: With the proper support, most people with Parkinson’s can live at home for years — often decades — after diagnosis. The key is understanding the disease, optimizing treatment, and building a care team that adapts to changing needs.

This comprehensive guide covers everything families need to know about supporting a loved one with Parkinson’s disease at home — from understanding the latest treatments to practical daily care strategies to how professional home care can help maintain quality of life throughout the disease journey.

Understanding Parkinson’s Disease (2025 Update)

What Is Parkinson’s Disease?

Parkinson’s disease (PD) is a progressive neurodegenerative disorder that primarily affects movement, though it impacts much more than that.

The science:

  • Parkinson’s occurs when nerve cells in the brain’s substantia nigra die or become impaired
  • These cells produce dopamine, a neurotransmitter essential for smooth, coordinated movement
  • By the time symptoms appear, 60-80% of dopamine-producing cells have already been lost
  • The disease also affects other brain systems, causing non-motor symptoms

Parkinson’s is the second most common neurodegenerative disease after Alzheimer’s — and it’s the fastest-growing neurological disorder worldwide.

The Numbers: Parkinson’s in America (2024-2025)

The scope of Parkinson’s is larger than previously understood:

  • Nearly 1 million Americans are living with Parkinson’s disease
  • 90,000 new diagnoses per year — 50% higher than previous estimates
  • 1.2 million Americans projected to have PD by 2030
  • By 2050, 25 million people worldwide will have Parkinson’s (112% increase from 2021)
  • $52+ billion annual economic burden in the U.S. (medical costs, lost productivity, caregiving)
  • Average age of diagnosis: 60 years old
  • 5-10% are diagnosed before age 50 (young-onset Parkinson’s)
  • Men are 1.5x more likely to develop Parkinson’s than women

Geographic patterns:

  • Higher incidence in the “Rust Belt” (industrial Midwest)
  • Higher rates in Southern California, Southeastern Texas, Central Pennsylvania, and Florida
  • Possible links to industrial chemicals and pesticide exposure

What Causes Parkinson’s?

Scientists still don’t fully understand what causes Parkinson’s, but research points to a combination of factors:

Genetic factors (10-15% of cases):

  • Multiple genes associated with increased risk (LRRK2, GBA, SNCA, PARK7, PINK1, others)
  • Having a first-degree relative with PD increases risk 2-3x
  • New therapies are targeting some genetic forms

Environmental factors:

  • Pesticide and herbicide exposure (paraquat, rotenone) — significant risk factor
  • Industrial chemicals and solvents
  • Head injuries — especially repeated trauma
  • Rural living (possibly due to well water or agricultural chemicals)

Protective factors:

  • Regular exercise — may reduce risk by 30-40%
  • Caffeine consumption — is associated with a lower risk
  • Not smoking — smokers have lower PD risk (but smoking’s other harms far outweigh this)
  • Mediterranean diet — may be protective

NEW Research (2024-2025):

  • Air pollution (PM2.5) linked to increased Parkinson’s and Lewy body dementia risk
  • Gut microbiome changes may precede brain changes by years
  • People with inflammatory bowel disease (IBD) have a higher risk of Parkinson’s — the gut-brain connection is increasingly important
  • Alpha-synuclein protein accumulation (Lewy bodies) is the hallmark pathology

Symptoms of Parkinson’s Disease

Parkinson’s is much more than tremor. It affects multiple body systems:

Motor Symptoms (Movement)

The “cardinal” motor symptoms:

✓ Tremor — Rhythmic shaking, usually starting in one hand (“pill-rolling” tremor); occurs at rest and often improves with movement

✓ Bradykinesia — Slowness of movement; difficulty initiating movement; reduced arm swing when walking; smaller handwriting (micrographia)

✓ Rigidity — Muscle stiffness; “cogwheel” rigidity (jerky resistance to movement); pain and cramping

✓ Postural instability — Balance problems; stooped posture; tendency to fall (usually develops later in disease)

Other motor symptoms:

  • Gait changes — Shuffling walk, short steps, freezing (feet feel “glued to floor”)
  • Reduced facial expression (“masked face”)
  • Soft, monotone speech (hypophonia)
  • Difficulty swallowing (dysphagia) — can lead to aspiration pneumonia
  • Reduced dexterity — Difficulty with buttons, utensils, writing

Non-Motor Symptoms (Often More Disabling)

Many people don’t realize that non-motor symptoms often cause more disability than tremor:

Cognitive and mental:

  • Depression — Affects 40-50% of people with PD
  • Anxiety — Common, often precedes motor symptoms
  • Apathy — Loss of motivation (distinct from depression)
  • Cognitive changes — Slowed thinking, difficulty multitasking, executive dysfunction
  • Dementia — Develops in 50-80% of people with PD over time (usually later stages)
  • Hallucinations — Often medication-related; can be visual, auditory

Sleep disturbances:

  • Insomnia — Difficulty falling or staying asleep
  • REM sleep behavior disorder — Acting out dreams; can precede PD by years
  • Excessive daytime sleepiness
  • Restless legs syndrome

Autonomic dysfunction:

  • Constipation — Very common, often precedes motor symptoms by years
  • Urinary urgency/frequency
  • Orthostatic hypotension — Dizziness when standing (blood pressure drops)
  • Excessive sweating
  • Sexual dysfunction

Sensory:

  • Loss of smell (anosmia) — Often one of the earliest symptoms, years before diagnosis
  • Pain — Muscle cramps, dystonia, neuropathic pain
  • Fatigue — Pervasive exhaustion

Disease Progression: What to Expect

Parkinson’s is progressive, but the rate varies enormously. Some people remain relatively stable for decades; others progress more quickly.

The Hoehn and Yahr Scale (Staging):

Stage Description Typical Duration
Stage 1 Mild symptoms on one side of the body; minimal functional impairment Variable (years)
Stage 2 Symptoms on both sides; no balance impairment; daily activities take longer 1-3+ years
Stage 3 Mild to moderate impairment; balance problems begin; still independent Variable
Stage 4 Severe disability; can still walk and stand unassisted, but is significantly impaired Variable
Stage 5 Wheelchair-bound or bedridden without assistance Variable

Important: These stages are general guidelines. Many people with Parkinson’s never reach Stage 5, and progression through stages is highly individual.

Factors that may affect progression:

  • Age at diagnosis (younger onset often slower progression of motor symptoms, but longer total disease course)
  • Predominant symptom type (tremor-dominant, often slower than rigidity-dominant)
  • Response to medication
  • Exercise and physical activity (may slow progression)
  • Cognitive status

Treatment Options (2024-2026 Update)

Medications

Medication remains the cornerstone of Parkinson’s treatment. The goal is to restore dopamine levels or mimic dopamine’s effects.

Levodopa/Carbidopa (Gold Standard)

What it is: Levodopa converts to dopamine in the brain; carbidopa prevents breakdown before reaching the brain.

Brand names: Sinemet, Rytary, Duopa, Crexont (NEW 2024)

Effectiveness: Most effective medication for motor symptoms; often called the “gold standard.”

Challenges:

  • “Wearing off” — Effects don’t last as long over time
  • “On-off” fluctuations — Unpredictable symptom control
  • Dyskinesia — Involuntary movements (with long-term use)

NEW Formulations (2024-2025):

  • Crexont (FDA approved August 2024) — Extended-release formulation, fewer daily doses
  • Vyalev pump (FDA approved October 2024) — Continuous under-the-skin infusion for more stable levels
  • ND0612 (resubmitted to FDA 2025) — Subcutaneous levodopa/carbidopa infusion

Dopamine Agonists

What they do: Mimic dopamine’s effects directly on receptors

Medications: Pramipexole (Mirapex), ropinirole (Requip), rotigotine (Neupro patch), apomorphine (Apokyn)

Use: Often used early in the disease or as an add-on to levodopa

Side effects: Nausea, sleepiness, impulse control problems (gambling, compulsive shopping, hypersexuality), hallucinations

Other Medications

MAO-B inhibitors: Rasagiline (Azilect), selegiline (Eldepryl), safinamide (Xadago) — Block dopamine breakdown

COMT inhibitors: Entacapone (Comtan), opicapone (Ongentys) — Extend the levodopa effect

Amantadine: Helps with dyskinesia; modest effect on motor symptoms

Anticholinergics: Trihexyphenidyl, benztropine — Help tremor (not commonly used due to cognitive side effects)

NEW: Tavapadon (Expected 2025-2026)

A potential breakthrough:

  • First novel Parkinson’s drug mechanism in over 50 years
  • Selectively activates D1 dopamine receptors (current drugs mainly target D2)
  • Once-daily dosing
  • May provide a “second honeymoon” for patients whose levodopa is losing effectiveness
  • AbbVie submitted a New Drug Application to the FDA in late 2025
  • May help even advanced patients

Surgical Treatments

Deep Brain Stimulation (DBS)

What it is: Surgically implanted device delivers electrical pulses to specific brain areas

How it works: Electrodes are placed in the subthalamic nucleus or the globus pallidus and connected to a pacemaker-like device in the chest

Benefits:

  • Reduces tremor, rigidity, and bradykinesia
  • Reduces motor fluctuations and dyskinesia
  • Allows reduction in medication doses
  • Effects are adjustable and reversible

Candidates: Usually for people with good levodopa response but troublesome motor fluctuations or dyskinesia; typically 4+ years after diagnosis

NEW: Adaptive DBS (FDA approved February 2025):

  • Game-changing advancement
  • The device continuously monitors brain activity
  • Automatically adjusts stimulation in real-time based on symptoms
  • Better symptom control with fewer side effects
  • Medtronic device with two approved algorithms

Focused Ultrasound

What it is: Non-invasive; uses ultrasound waves to create precise lesions in the brain

For: Tremor-dominant Parkinson’s (one-sided)

Benefits: No surgery, no implant

Limitations: One-sided only; permanent lesion (not adjustable)

Emerging Therapies (Clinical Trials 2024-2026)

The Parkinson’s treatment pipeline is more robust than ever:

Disease-Modifying Therapies (Potential to Slow Progression)

Alpha-synuclein targeting:

  • Prasinezumab — Entering Phase 3 trials (June 2025); targets toxic alpha-synuclein protein; could slow or stop disease progression

GLP-1 receptor agonists (diabetes drugs):

  • Lixisenatide — Showed promising results in a disease modification trial
  • Exenatide — Phase 3 trial (Exenatide-PD3), unfortunately, did not meet the primary endpoint (2024)
  • Research continues with other GLP-1 drugs

Gene therapy:

  • AAV2-GDNF — Delivers growth factor gene directly to the brain; potential for neuroprotection
  • LRRK2 inhibitors — For people with LRRK2 genetic mutations

Cell therapy:

  • Bemdaneprocel (BlueRock/Bayer) — Stem cell therapy to replace lost dopamine neurons; Phase 1 showed safety, increased dopamine; entering Phase 3 (2025)
  • Multiple other stem cell programs are advancing

Anti-inflammatory approaches:

  • NLRP3 inflammasome inhibitors — Target brain inflammation
  • Azathioprine — Immunosuppressant being tested

Ambroxol:

  • Cough suppressant repurposed
  • Boosts the enzyme that clears alpha-synuclein
  • Being tested in people with GBA gene mutations

The Power of Exercise (Evidence-Based)

Exercise may be the closest thing we have to a disease-modifying treatment.

NEW Research (2024-2025):

CYCLE-II Trial Results:

  • High-intensity aerobic exercise (cycling at 75+ RPM) showed dramatically slower disease progression
  • Aerobic exercise group: 0.2 points/year progression on motor scale
  • Usual care group: 3.9 points/year progression
  • Nearly 20x difference in progression rate

Brain changes from exercise:

  • Increased dopamine transporter levels in the substantia nigra and putamen
  • Increased neuromelanin concentration (a marker of dopamine cell health)
  • Suggests exercise may actually protect or restore dopamine neurons

Parkinson’s Foundation recommendations:

  • Minimum 2.5 hours per week of exercise
  • Those who exercise consistently have a slower decline in quality of life
  • Earlier exercise = better outcomes

Best types of exercise for Parkinson’s:

Type Benefits Examples
Aerobic May slow progression; improves cardiovascular health Cycling, walking, swimming, dancing
Strength training Maintains muscle mass; enhances function Weight training, resistance bands
Balance and flexibility Reduces fall risk; maintains mobility Tai chi, yoga, balance exercises
Rhythm and dance Improves gait, balance; highly engaging Dance classes, rhythmic movement
Boxing Improves coordination, agility, and balance Rock Steady Boxing (PD-specific program)

Special programs for Parkinson’s:

  • Rock Steady Boxing — Non-contact boxing training
  • Dance for PD — Dance classes designed for Parkinson’s
  • PWR! (Parkinson Wellness Recovery) — Evidence-based exercise program
  • LSVT BIG — Amplitude-based movement therapy

Daily Care Challenges and Solutions

Medication Management

Parkinson’s medication timing is critical. Dopamine levels fluctuate, and timing doses correctly is essential for symptom control.

Challenges:

  • Multiple medications, multiple times per day
  • Timing around meals (protein can interfere with levodopa absorption)
  • “Wearing off” — symptoms return before next dose
  • “On-off” fluctuations — unpredictable symptom control
  • Cognitive changes make self-management difficult

Solutions:

✓ Strict medication schedule — Same times every day

✓ Alarms and reminders — Phone alarms, smart pill dispensers

✓ Medication log — Track when taken and symptom response

✓ Protein timing — Space protein-rich foods away from levodopa doses (take medication 30-60 minutes before meals or 2 hours after)

✓ Emergency supply — Always have backup medications (purse, car, family members’ homes)

✓ Hospitalization preparedness — Hospital pharmacies may not have PD medications; bring your own supply and insist on medication timing (critical for PD patients)

✓ Smart pill dispensers — Automated dispensers (Hero, MedMinder) lock medications, dispense correct doses, and alert if missed

Mobility and Fall Prevention

Falls are one of the most significant risks for people with Parkinson’s. Gait changes, balance problems, and freezing episodes all increase fall risk.

Why Parkinson’s increases fall risk:

  • Postural instability — Impaired balance reflexes
  • Freezing of gait — Feet feel stuck to the floor, especially at doorways, when turning
  • Festination — Short, rapid steps that can lead to falling forward
  • Reduced arm swing — Less ability to catch yourself
  • Orthostatic hypotension — Dizziness when standing
  • Cognitive changes — Impaired judgment, attention

Fall prevention strategies:

✓ Home safety modifications:

  • Remove throw rugs
  • Install grab bars in the bathroom
  • Improve lighting throughout
  • Clear pathways (36+ inches wide)
  • Add contrast tape to stair edges
  • Consider a stairlift if stairs are problematic

✓ Mobility aids:

  • Cane or walker when needed (properly fitted)
  • Rollator with seat for rest breaks
  • Laser canes (project a line on the floor to help overcome freezing)

✓ Strategies for freezing:

  • Count “1-2-3” before stepping
  • March in place before walking
  • Step over an imaginary line
  • Use a laser pointer or visual cues on the floor
  • Listen to rhythmic music or a metronome

✓ Getting up safely:

  • Pause before standing
  • Rise slowly (orthostatic hypotension)
  • Wait until stable before walking

✓ Medical alert system:

  • Automatic fall detection (Apple Watch, dedicated devices)
  • 24/7 response if a fall occurs

Eating and Nutrition

Nutrition challenges in Parkinson’s:

  • Swallowing difficulties (dysphagia) — Risk of choking, aspiration pneumonia
  • Reduced appetite — Medications, depression, fatigue
  • Constipation — Very common; can worsen symptoms
  • Protein-levodopa interaction — Protein can reduce medication effectiveness
  • Weight loss — Common in advanced disease
  • Tremor and rigidity — Make eating difficult

Nutrition strategies:

✓ Swallowing safety:

  • Sit upright during and after meals
  • Take small bites and chew thoroughly
  • Thicken liquids if needed (thin liquids are most complex to swallow)
  • Avoid foods that crumble (crackers, dry bread)
  • A speech therapist can evaluate swallowing and recommend strategies

✓ Protein timing:

  • Eat protein-rich foods (meat, fish, eggs, dairy, beans) at dinner rather than breakfast/lunch
  • Or space protein away from levodopa doses
  • Don’t eliminate protein — it’s essential; time it wisely

✓ Constipation prevention:

  • High-fiber foods (fruits, vegetables, whole grains, bran)
  • Adequate fluids (8+ glasses daily)
  • Prunes or prune juice
  • Regular physical activity
  • Stool softeners, if needed

✓ Antioxidant-rich foods:

  • Berries, leafy greens, nuts
  • Mediterranean diet pattern associated with better outcomes

✓ Bone health:

  • Calcium-rich foods (dairy, fortified foods)
  • Vitamin D (1,000-2,000 IU daily)
  • Fall risk makes fractures more likely — strong bones matter

✓ Adaptive equipment:

  • Weighted utensils (reduce tremor effect)
  • Built-up handles (easier to grip)
  • Plate guards (prevent food from sliding)
  • Non-slip placemats
  • Two-handled cups

Personal Care and Hygiene

Motor symptoms make bathing, dressing, and grooming increasingly difficult.

Bathing:

✓ Shower instead of tub — Easier and safer entry/exit

✓ Shower chair or bench — Sit while bathing

✓ Handheld showerhead — Control water direction

✓ Grab bars — At entry, along walls, near shower controls

✓ Non-slip mat — Inside shower/tub and on bathroom floor

✓ Liquid soap — Easier than bar soap (won’t drop)

✓ Long-handled sponge — For reaching back, feet

✓ Warm bathroom — Reduces stiffness

✓ Timing — Bathe when medication is working well (“on” time)

Dressing:

✓ Velcro or magnetic closures — Replace buttons and zippers

✓ Elastic waistbands — Easier than buttons/zippers on pants

✓ Slip-on shoes — Or elastic shoelaces

✓ Front-closure bras — Easier than back clasps

✓ Button hooks and zipper pulls — If buttons are necessary

✓ Dressing stick — Helps pull on pants, shirts

✓ Sit while dressing — Safer and less tiring

✓ Lay out clothes in order — Reduces cognitive load

Grooming:

✓ Electric razor — Safer than manual

✓ Electric toothbrush — Does the work for you

✓ Built-up handle grips — For toothbrush, comb, razor

✓ Wall-mounted mirror — Position at seated level if needed

Communication

Parkinson’s affects speech in 75-90% of people — soft voice, monotone, slurred speech, rapid speech.

Strategies:

✓ LSVT LOUD — Evidence-based speech therapy program specifically for Parkinson’s; teaches speaking with increased volume and effort

✓ Speech therapy — Can help with voice projection, articulation, and swallowing

✓ Face the listener — Allows lip reading to supplement hearing

✓ Reduce background noise — Turn off TV, move to a quiet location

✓ Short sentences — Easier to understand

✓ Voice amplifier — A wearable device that amplifies speech

✓ Communication apps — If speech becomes very difficult

Sleep

Sleep problems are extremely common in Parkinson’s and significantly affect quality of life.

Common sleep issues:

  • Difficulty falling asleep
  • Frequent waking
  • REM sleep behavior disorder (acting out dreams)
  • Restless legs syndrome
  • Sleep apnea
  • Nocturia (frequent nighttime urination)
  • Excessive daytime sleepiness

Strategies:

✓ Sleep hygiene:

  • Consistent bedtime and wake time
  • Cool, dark, quiet bedroom
  • Limit screen time before bed
  • Avoid caffeine after noon
  • Avoid alcohol (disrupts sleep architecture)

✓ Bedroom safety:

  • Bed rails (for REM sleep behavior disorder — prevent falling out)
  • Mattress on floor (if falls from bed are frequent)
  • Clear path to the bathroom
  • Motion-activated nightlights
  • Urinal or commode nearby

✓ Medication timing:

  • Some PD medications cause insomnia; discuss timing with the doctor
  • May need medication adjustment for nighttime symptoms

✓ Medical evaluation:

  • Sleep study if sleep apnea is suspected
  • Treatment of REM sleep behavior disorder (may need medication)

How Professional Home Care Helps

Most people with Parkinson’s want to stay at home — and with the proper support, they can, often for many years after diagnosis.

Professional home care addresses the specific challenges of Parkinson’s disease:

Personal Care Assistance

✓ Bathing and showering — Safe assistance during high-risk activity; timing with medication “on” periods

✓ Dressing — Help with buttons, zippers, shoes; patience with slowness

✓ Grooming — Shaving, hair care, oral hygiene

✓ Toileting — Assistance as needed; maintaining dignity

✓ Transfers — Safe techniques for getting in/out of bed, chairs

Medication Support

✓ Medication reminders — Critical for Parkinson’s (timing matters enormously)

✓ Medication organization — Weekly pill organizers, tracking systems

✓ Monitoring for side effects — Hallucinations, confusion, dyskinesia

✓ Communication with healthcare providers — Reporting changes

Nutrition Support

✓ Meal preparation — Nutritious meals with proper texture for swallowing safety

✓ Protein timing — Coordinating meals with medication schedule

✓ Grocery shopping — Ensuring nutritious food is available

✓ Hydration encouragement — Preventing dehydration and constipation

✓ Feeding assistance — If needed, with patience and dignity

Mobility and Exercise Support

✓ Walking assistance — Steady arm, cueing for freezing episodes

✓ Transfer assistance — Safe techniques for bed, chair, toilet, car

✓ Fall prevention — Supervision during high-risk activities

✓ Exercise encouragement — Assisting with prescribed exercises, walking programs

✓ Transportation — To exercise classes, physical therapy, and medical appointments

Home Safety

✓ Environmental assessment — Identifying and addressing hazards

✓ Monitoring — Watching for changes in mobility, cognition, and safety

✓ Emergency response — Knowing what to do if a fall or medical emergency occurs

Companionship and Emotional Support

✓ Conversation and engagement — Reducing isolation and depression

✓ Cognitive stimulation — Games, reading, reminiscence

✓ Emotional support — Listening, encouraging, providing hope

✓ Activity facilitation — Helping maintain hobbies and interests

Caregiver Respite

✓ Breaks for family caregivers — Preventing burnout

✓ Consistent, reliable care — So family can work, rest, or take vacations

✓ Peace of mind — Knowing your loved one is safe and cared for

Parkinson’s-Specific Caregiver Training

Caregivers who work with Parkinson’s patients need specialized knowledge:

  • Understanding “on” and “off” periods
  • The importance of medication timing
  • Cueing techniques for freezing
  • Safe transfer methods
  • Swallowing safety
  • Communication strategies
  • Recognizing complications (falls, infections, medication side effects)
  • Dementia care (for those who develop cognitive changes)

At All Heart Home Care, our caregivers receive training in Parkinson’s disease care, including the unique challenges of supporting someone with this complex condition.

Stages of Care: What to Expect

Early Stage (Diagnosis to Stage 2)

What’s happening: Symptoms are mild; the person remains largely independent; medication is typically very effective

Home care needs:

  • May not need daily care
  • Periodic help with housekeeping, errands
  • Transportation to medical appointments
  • Exercise and activity encouragement
  • Companionship and emotional support

Focus: Establishing healthy habits (exercise, diet, medication routine), maintaining independence, planning for the future

Middle Stage (Stages 2-3)

What’s happening: Symptoms are more pronounced; balance problems begin; daily activities take longer and become more difficult; medication adjustments are needed

Home care needs:

  • Increasing assistance with ADLs
  • Medication reminders and management
  • Meal preparation with dietary considerations
  • Regular transportation
  • Fall prevention
  • Exercise assistance

Focus: Maintaining function, preventing falls, managing medication fluctuations, supporting quality of life.

Advanced Stage (Stages 4-5)

What’s happening: Significant disability; may need a wheelchair; cognitive changes are common; complex care needs

Home care needs:

  • Extensive assistance with all ADLs
  • Careful medication management
  • Swallowing-safe meal preparation
  • Frequent repositioning (skin integrity)
  • 24-hour care may be needed
  • Close monitoring for complications
  • Family support and respite

Focus: Comfort, safety, dignity, quality of life, supporting family caregivers

Resources for Families

National Organizations

  • Parkinson’s Foundation: parkinson.org | 1-800-4PD-INFO (473-4636) — Comprehensive resources, helpline, local chapters
  • Michael J. Fox Foundation: michaeljfox.org — Research news, clinical trial finder
  • American Parkinson Disease Association: apdaparkinson.org — Support groups, educational resources
  • Davis Phinney Foundation: davisphinneyfoundation.org — Focus on living well with PD

Finding a Specialist

  • Movement disorder specialists — Neurologists with specialized training in Parkinson’s
  • Only ~50% of PD patients see a neurologist; only 9% see a movement disorder specialist
  • Worth traveling for initial evaluation and periodic follow-up
  • Parkinson’s Foundation Center of Excellence network: parkinson.org/expert-care

Exercise Programs

Clinical Trials

  • Fox Trial Finder: foxtrialfinder.org — Match with clinical trials
  • ClinicalTrials.gov — Comprehensive database

Caregiver Support

  • Parkinson’s Foundation Caregiver Resources: parkinson.org/caregivers
  • VA Caregiver Support Line: 1-855-260-3274 (for veterans’ caregivers)
  • Local support groups — Through Parkinson’s Foundation chapters

The Bottom Line

Parkinson’s disease is challenging — but it’s manageable.

Key takeaways:

✓ 1 million Americans have Parkinson’s — You’re not alone

✓ Treatment has never been better — New medications, adaptive DBS, promising trials

✓ Exercise may slow progression — 2.5+ hours weekly minimum; intensity matters

✓ Medication timing is critical — Strict schedules, proper coordination with meals

✓ Fall prevention is essential — Home modifications, mobility aids, supervision

✓ Non-motor symptoms matter — Depression, sleep, cognition need attention too

✓ Home care enables aging in place — Most people can stay home with proper support

✓ Care needs evolve — Build a flexible team that can adapt

✓ Family caregivers need support — Respite care prevents burnout

We Can Help

At All Heart Home Care, we have extensive experience supporting people with Parkinson’s disease and their families throughout San Diego County.

Our Parkinson’s care services include:

✓ Personal care (bathing, dressing, grooming, toileting)

✓ Medication reminders with attention to critical timing

✓ Meal preparation with swallowing safety and protein timing

✓ Mobility assistance and fall prevention

✓ Exercise support and encouragement

✓ Transportation to medical appointments, therapy, exercise programs

✓ Companionship and emotional support

✓ Respite care for family caregivers

✓ 24-hour care when needed

Our caregivers are trained in Parkinson’s-specific care, including cueing techniques for freezing, safe transfer methods, and understanding the unique challenges of this condition.

Our rates begin at $37/hour (depending on shift length), and we provide transparent pricing with no hidden fees.

Call us at (619) 736-4677 for a free consultation.

Because with the proper support, people with Parkinson’s can live well at home — maintaining quality of life, dignity, and independence throughout their journey.

Share:

More Posts

Search by Category

About the author

Eric Barth, co-founder and CEO of All Heart Home Care San Diego

Eric Barth

CEO, All Heart Home Care

Eric Barth is the founder and CEO of All Heart Home Care™, an award-winning San Diego agency dedicated to providing compassionate, personalized in-home care for seniors. As the writer behind the All Heart Home Care blog, Eric shares insights and stories drawn from years of hands-on experience leading one of San Diego’s most trusted home care teams.

Get started

Additional FAQ's on Digital Home Care System

Yes. HITRUST CSF Certified security—same gold standard hospitals use. More secure than paper.

Extremely rare (99.9% uptime), but caregivers can work in offline mode if connectivity is temporarily lost. Care continues without interruption. Documentation syncs automatically when connection returns.

Caregivers document throughout their shift in real-time. Notes are typically finalized and visible in Family Room within minutes of the caregiver clocking out.

We can set up Family Room accounts for as many family members as you want—local siblings, children in other states, anyone you authorize. Everyone sees the same information. No limit on number of accounts.

Yes. Family Room includes secure document storage. Upload medical records, insurance cards, POLST forms, medication lists, doctor’s instructions, photos—anything important. All authorized family members can access these documents. No more searching for forms.

We update the digital care plan immediately, and all caregivers receive instant notification of changes. This is one of the biggest advantages over paper—updates reach everyone simultaneously, not gradually over days or weeks.

Absolutely. Family Room is a tool for families who want it, not a replacement for human connection. We’re always reachable by phone at (619) 736-4677. Many families use both—portal for quick updates, phone calls for detailed conversations.

We train every caregiver on the WellSky mobile app before their first shift. The app is intuitive—designed specifically for caregivers, not engineers. If someone can text and use GPS navigation, they can use our caregiver app. And we provide ongoing support.

Yes. The Family Room care calendar shows upcoming shifts with caregiver names and times. You’ll know exactly who’s coming and when. No more surprise caregiver switches.

Use the two-way messaging feature in Family Room. Send your message, and the caregiver receives an instant notification on their mobile app. They’ll see it and can respond or confirm receipt immediately.

Yes. All notes are searchable. Want to see every mention of “appetite” from the past month? Type it in the search bar and find all relevant notes instantly. No more flipping through pages of handwritten entries.

You can access the complete care history from the day Family Room access began. Review notes from last week, last month, or since care started. Historical data helps identify patterns over time.

Family members cannot delete caregiver documentation—that’s protected and maintained by All Heart for record-keeping purposes. You can delete your own uploaded documents, but we can often recover those if needed within a certain timeframe.

With your authorization, we can provide limited Family Room access to healthcare providers. This allows better coordination between home care and medical teams. You control exactly who has access and what they can see.

Family Room works both ways. You can access it through any web browser (Chrome, Safari, Firefox, Edge) on your computer, or download the mobile app for easier access on your phone or tablet. Your choice.

All authorized Family Room users see the same care information—we can’t create different access levels for different family members. However, you (as the primary contact) control who gets Family Room access in the first place. If family dynamics are challenging, you decide who receives login credentials.

The messaging system shows when messages are delivered and read. You’ll see confirmation that the caregiver received and opened your message. For critical information, you can also call our office to ensure the message was received.

Yes. You can print individual shift notes, date ranges, or specific types of documentation (like Change of Condition reports) directly from Family Room. Useful for doctor appointments or insurance purposes.

If your loved one transitions to hospice, hospital, or another care setting, we can maintain your Family Room access for a transition period so you have complete records. After care ends, we provide a final data export if requested, then access is closed according to your wishes and legal requirements.

Yes. Family Room is accessible from anywhere with internet connection. If you’re traveling abroad, you can still check on your loved one’s care. The system works globally.

Family Room doesn’t support selective information sharing—all authorized users see the same care documentation. For private family communications, you’d need to use personal email, phone, or text outside the Family Room system.

Change of Condition reports automatically alert you when caregivers document significant health changes. For custom alerts (like specific behaviors or situations), talk to our office—we may be able to add special flags to your loved one’s care plan that trigger notifications.

We typically set up Family Room access during your initial care planning meeting, before the first caregiver shift. You’ll have login credentials and a brief tutorial on how to use the portal. Most families are viewing their first shift notes within 24 hours of care beginning.

Complete Security & Privacy Information

HITRUST CSF Certification - What This Means

HITRUST CSF (Common Security Framework) is the most rigorous security certification in healthcare. It's harder to achieve than HIPAA compliance alone. This certification requires:

  • Annual independent security audits by certified assessors
  • Continuous monitoring of security controls
  • Documented policies and procedures for data protection
  • Employee security training and background checks
  • Incident response and disaster recovery plans
  • Regular penetration testing to identify vulnerabilities

Why it matters: If it’s secure enough for hospital patient records, it’s secure enough for your loved one’s care information.

Bank-Level Encryption Explained

Data in Storage (At Rest):

  • All information stored on WellSky servers is encrypted using AES-256 encryption
  • This is the same encryption standard used by banks and the U.S. military
  • Even if someone physically accessed the servers, they couldn't read the data without encryption keys

Data in Transmission (In Transit):

  • When you access Family Room from your phone or computer, all data traveling between your device and our servers is encrypted using TLS 1.2 or higher
  • This is the same technology that protects your online banking
  • The "lock" icon in your browser address bar confirms this encryption

What this means: Even if someone intercepted the data (extremely unlikely), they would only see scrambled, unreadable information.

Strict Access Controls

Who Can See What

Family Member Access:

  • You decide exactly which family members get Family Room login credentials
  • Each person has their own unique username and password
  • You can add or remove access at any time
  • Family members can only view information for your loved one—no one else's

Caregiver Access:

  • Caregivers only see care plans for clients they're actively assigned to
  • When a caregiver is no longer working with your loved one, their access to that care plan is immediately revoked
  • Caregivers cannot access billing information or family contact details

Staff Access:

  • All Heart staff access is role-based and monitored
  • Office staff see only the information necessary for their job function
  • Nursing supervisors have broader access for quality oversight
  • All access is logged with timestamps

Audit Trail:

  • Every action is logged: who accessed what information, when, and from where
  • These logs are regularly reviewed for any suspicious activity
  • Logs are maintained for compliance and security purposes

HIPAA Compliance - Federal Protection

The Health Insurance Portability and Accountability Act (HIPAA) establishes federal standards for protecting health information. Our compliance includes:

Privacy Rule Compliance:

  • Your loved one's health information is never shared without authorization
  • You control who has access to information
  • Clear privacy policies explain how information is used

Security Rule Compliance:

  • Administrative safeguards (policies, training, access management)
  • Physical safeguards (secure facilities, workstation security)
  • Technical safeguards (encryption, authentication, audit controls)

Breach Notification:

  • In the extremely unlikely event of a data breach, affected individuals are notified promptly as required by law
  • We maintain insurance and procedures for breach response

Business Associate Agreements:

  • WellSky (our technology provider) has signed formal agreements guaranteeing HIPAA compliance
  • All vendors with potential access to data must meet the same standards

Continuous Backup & Disaster Recovery

Automated Backups:

  • Data is backed up automatically multiple times per day
  • Backups are encrypted and stored in geographically separate secure data centers
  • This protects against hardware failure, natural disasters, or other catastrophic events

Redundancy:

  • Data is stored across multiple servers simultaneously
  • If one server fails, others immediately take over
  • No single point of failure in the system

Disaster Recovery Plan:

  • Formal, tested procedures for recovering from any disaster scenario
  • Regular drills ensure the recovery plan actually works
  • Recovery Time Objective (RTO): System restored within hours, not days
  • Recovery Point Objective (RPO): Minimal data loss (minutes, not hours)

What this guarantees: Your loved one’s care information is never truly lost. Even if an entire data center were destroyed, complete backups exist elsewhere.

99.9% Uptime Guarantee

What “99.9% uptime” means:

  • The system is available and functional 99.9% of the time
  • That translates to less than 9 hours of downtime per year
  • Most families never experience a single outage

Monitoring:

  • System performance monitored 24/7/365
  • Automated alerts notify technical teams of any issues immediately
  • Problems are often resolved before users even notice them

If the system goes down:

  • Caregivers can work in offline mode on their mobile devices
  • Care continues without interruption
  • Documentation is saved locally and syncs automatically when connection returns
  • Your loved one's care never depends on perfect internet connectivity

Multi-Factor Authentication (Optional)

For families who want extra security, we can enable multi-factor authentication (MFA):

  • Requires both password AND a code sent to your phone
  • Even if someone stole your password, they couldn't access your account without your phone
  • Optional but recommended for families with high security concerns

Mobile Device Security

Caregiver Phones:

  • WellSky mobile app requires login credentials
  • Apps lock automatically after inactivity
  • No data is stored permanently on caregiver phones—it's accessed from secure servers
  • If a phone is lost or stolen, we can remotely disable access immediately

Your Devices:

  • Family Room is accessed through secure web browsers or mobile apps
  • You can log out from any device at any time
  • Session timeouts prevent unauthorized access if you forget to log out

Security Incident Response

In the extremely unlikely event of a security concern:

  • Detection: Automated systems and staff monitoring detect potential issues immediately
  • Response: Security team investigates and responds within minutes
  • Containment: Affected systems isolated to prevent spread
  • Resolution: Issue resolved and systems secured
  • Notification: Affected users notified as required by law
  • Review: Incident analyzed to prevent future occurrences

Digital vs. Paper Security Comparison

Security Concern
Paper Binders
WellSky_Color

Who can read it?

Anyone who enters the home

Only authorized users

Can it be lost?

✔︎ — permanently

✕ — backed up continuously

Can it be damaged?

✔︎ — spills, fires, floods

✕ — stored digitally

Is access tracked?

✕

✔︎ Access logged & audited

Encryption protection?

✕

✔︎ — bank-level encryption

Updates reach everyone?

✕ — printing/distribution delays

✔︎ — instant notification

Survives disasters?

✕

✔︎ — redundant backups

HIPAA compliant?

✕ — difficult to prove

✔︎ — certified & audited

Can be accidentally discarded?

✔︎

✕ — requires a password

Verdict: Digital is significantly more secure than paper in every measurable way.

Common Security Questions

"What if I forget my password?"

Secure password reset process via email or phone verification. We verify your identity before resetting access.

"Can hackers access the system?"

Multiple layers of security make unauthorized access extremely difficult. Regular penetration testing simulates attacks to identify and fix vulnerabilities before hackers can exploit them.

"What if my phone is stolen?"

Change your password immediately from any other device. The thief would still need your password to access Family Room.

"Can All Heart staff see my credit card information?"

No. Payment processing is handled by a separate, PCI-compliant payment processor. We never see or store your full credit card number.

"What happens to the data if I stop using All Heart?"

Your data is retained according to legal requirements (typically 7 years for healthcare records), then securely deleted. You can request a copy of your data at any time.

This isn’t just secure—it’s among the most secure systems available in healthcare.

Your information is safer in our digital system than it ever was in a paper binder sitting on a kitchen counter.

Complete Care Plan Contents:

Care Goals & Priorities

  • What matters most to your family (safety, remaining at home, socialization, quality of life)
  • Family's priorities for daily care
  • Long-term care objectives

Emergency Contact Information

  • Primary and secondary emergency contacts
  • Preferred contact methods (call, text, email)
  • Contact priority order

Medical Conditions & Health History

  • Chronic conditions (dementia, Parkinson's, diabetes, heart conditions, etc.)
  • Recent hospitalizations or surgeries
  • Functional limitations (hearing, vision, mobility, speech)
  • Allergies and medication sensitivities
  • DNR status and advance directives

Mental Health & Cognitive Status

  • Dementia staging (if applicable): none, forgetful, mild, moderate, severe
  • Specific symptoms and behavioral patterns
  • Triggers that cause agitation or confusion
  • Calming strategies that work
  • Best times of day for activities
  • Communication preferences and techniques

Medications & Supplements

  • Complete medication list with dosages
  • Administration times and frequency
  • Medication reminder schedules
  • Who manages medications in the household
  • Special instructions (with food, before bed, etc.)

Mobility & Transfers

  • Mobility equipment used (walker, wheelchair, cane, gait belt)
  • Fall risk assessment
  • Transfer assistance needs
  • Use of dominant arm/hand (left or right)
  • Weight-bearing limitations

Personal Care Routines

  • Bathing preferences and frequency (shower, bath, sponge bath)
  • Grooming and hygiene assistance levels
  • Dressing assistance needs (independent, light assist, total assist)
  • Dental care and denture management
  • Skin care requirements

Meal Preparation & Dietary Needs

  • Favorite foods and meal preferences
  • Food allergies and restrictions
  • Special diets (diabetic, low-sodium, pureed, etc.)
  • Meal times (breakfast, lunch, dinner, snacks)
  • Appetite patterns and hydration goals
  • Swallowing difficulties or feeding assistance

Daily Routines & Schedules

  • Morning routine (wake time, preferences)
  • Afternoon activities and needs
  • Evening routine (dinner time, bedtime)
  • Sleep patterns and nighttime assistance
  • Napping schedule

Activities & Engagement

  • Favorite hobbies and interests
  • Activities at home (reading, games, music, crafts)
  • Activities away from home (parks, outings, restaurants)
  • Social preferences and visitor information
  • Brain health and cognitive activities

Home Environment Details

  • Gate codes and access instructions
  • Lockbox location and code
  • Parking information for caregivers
  • Pet care instructions (feeding, walking, behavior notes)
  • Safety equipment locations (grab bars, shower bench, raised toilet seat, bed rails)
  • Camera locations (if applicable - California law requires disclosure)

Transportation & Driving

  • Does client drive?
  • Caregiver transportation needs (errands, appointments)
  • Vehicle information (client's car vs. caregiver's car)
  • Parking permit requirements

Additional Important Information

  • Cultural or religious considerations
  • Language preferences
  • Communication style preferences
  • Special instructions or family notes

This comprehensive information ensures every caregiver provides consistent, personalized care from day one.

Tracking health changes that matter.

The Change of Condition form documents significant shifts in your loved one’s health—new symptoms, changes in mobility, behavioral differences, or improvements in their condition. This isn’t about minor day-to-day variations; it’s about meaningful changes that physicians, families, and caregivers need to know about.

Why have a separate form for this?

Instead of searching through weeks of caregiver narratives to find when symptoms started or conditions changed, this form puts all significant health changes in one easy-to-reference place. When doctors ask “when did the difficulty walking begin?” or family members want to understand the progression of a condition, you’ll have clear, dated documentation right at your fingertips.

What gets documented:

Each entry includes:

  • Date the change was observed
  • Description of the change in condition (symptoms, behaviors, mobility changes, cognitive shifts, or improvements)
  • Caregiver instructions based on the change (new monitoring requirements, adjusted assistance levels, safety precautions, or care plan modifications)
  • Authorization source (Client, Family, Doctor, or Agency)
  • Expiration date for temporary instructions (or marked as "Indefinitely" for ongoing changes)
  • Caregiver acknowledgments confirming they've read and understood the new instructions

Why this form matters:

Early detection changes outcomes. When caregivers notice something different—increased confusion, difficulty walking, loss of appetite, or even positive improvements like better mobility—documenting it immediately allows for faster responses.

Your family stays informed about meaningful health changes. Physicians receive accurate updates during appointments instead of relying on memory. Incoming caregivers know exactly what’s changed and what new precautions or assistance your loved one needs.

One form. Complete health timeline. Better care.

Whether tracking a temporary change after a fall or documenting the progression of a chronic condition, the Change of Condition form creates a clear health timeline. This helps everyone—doctors, family members, and our San Diego caregiver team—understand how your loved one’s needs are evolving and respond appropriately.

Proactive monitoring isn’t just good practice. It’s essential senior care.

How the Caregiver Narrative works.

Each caregiver documents their shift using a simple timeline format that captures the essential details of your loved one’s day. This structured approach ensures consistency across all caregivers and makes information easy to find.

What we document in every narrative:

  • Daily health observations and changes in condition
  • Meals, snacks, and hydration intake
  • Mobility assistance and transfer support
  • Activities completed, mood, and engagement levels
  • Social interaction, conversation topics, and preferences
  • Safety concerns or environmental changes noticed
  • Medication reminders provided (when applicable)
  • General well-being updates and family notes

Narrative Format:

Each entry follows this structure:

  • Start Date | Start Time | Caregiver Name
  • Timeline Narrative (chronological notes throughout the shift documenting activities, meals, observations, assistance provided, and any notable moments)
  • End Date | End Time | Caregiver Name

Why this format works:

This timeline approach provides clear, chronological documentation that’s easy for incoming caregivers to read and understand. Instead of wondering what happened during the previous shift, they can see exactly what your loved one ate, how they felt, what activities they enjoyed, and any health changes observed.

One record. Every shift. Complete continuity.

Whether care is short-term, long-term, or evolving, the Caregiver Narrative ensures nothing gets missed and nothing gets repeated. Your family can review the journal at any time during visits, or we can share photos of recent narratives with long-distance family members who want to stay connected and informed.

Complete transparency and peace of mind, right when you need it.

Your loved one's complete care roadmap, now available digitally.

The All Heart Customized Care Plan is completed during your initial assessment and tailored to your loved one’s specific needs, preferences, mobility level, and safety requirements.

Now fully digital and accessible on every caregiver’s phone.

We’ve gone paperless. Your care plan is accessible through our digital platform—caregivers reference it anytime, anywhere. Updates happen in real-time, so when something changes, every caregiver sees it immediately.

What's included:

Care goals, emergency contacts, medical conditions, mental health & cognitive status, medications & supplements, mobility & transfers, personal care routines, meal prep & dietary needs, daily routines, activities & engagement, and home environment details.

One plan. Every caregiver. Consistent care.

This digital approach ensures every San Diego caregiver has the same accurate, up-to-date information from day one—promoting safety, continuity, and person-centered care.

See how we organize care information. This form becomes your loved one’s digital care roadmap.