Strong, Capable, Supported: Living Independently with Parkinson’s

Strong, Capable, Supported- Living Independently with Parkinson’s

For many individuals with Parkinson’s disease, living alone is a reality that offers both freedom and challenges. With nearly 90,000 new diagnoses each year in the United States and an estimated 1.1 million Americans currently living with PD, more people than ever are navigating daily life while managing this progressive condition. While maintaining independence can feel empowering, it’s important to know that support and smart planning make all the difference when it comes to aging safely and confidently at home.

At All Heart Home Care, we believe that living alone doesn’t mean going it alone. With the right strategies, resources, and support network, you can continue living life on your terms.


The Emotional Landscape of Living Alone

Coming to Terms with Your Experience

If you live alone with Parkinson’s, your day-to-day experience may feel quite different from someone who shares their home with a partner or caregiver. That’s okay. Every person’s journey with PD is unique. Give yourself space to accept your circumstances and remember that your path—and your voice—matter.

Understanding the Mental Health Connection

Research shows that depression and anxiety are extremely common in Parkinson’s, affecting approximately 50% and 40% of people with the condition, respectively. According to the Parkinson’s Foundation Outcomes Project, mood and mental health have an even greater impact on quality of life than motor symptoms. What’s important to understand is that these aren’t simply reactions to having a chronic illness—they’re often caused by the same brain chemistry changes that affect movement. Depression and anxiety can emerge at any time, and about 80% of people with Parkinson’s report at least one mental health concern during their journey.

If you’re experiencing persistent feelings of sadness, loss of interest in activities you once enjoyed, excessive worry, or fatigue lasting more than five days over a two-week period, reach out to your medical team. These symptoms are highly treatable through medication, cognitive behavioral therapy, exercise, and counseling. Tools like AARP’s Connect2Affect can help you identify signs of social isolation before they become more serious.

Building a Circle of Support

Living alone doesn’t mean you are alone. There are people who care and want to help. Your support network might include:

  • Family members and close friends
  • Neighbors and former coworkers
  • Medical professionals, including movement disorder specialists
  • Mental health counselors or therapists familiar with chronic illness
  • Faith leaders or spiritual communities
  • Local or virtual Parkinson’s support groups
  • Pets, which provide companionship and emotional comfort—you can register a pet as an Emotional Support Animal

Staying Connected from Home

Technology has opened remarkable opportunities for people with Parkinson’s to stay connected, access expert care, and participate in wellness programs—all from home. Many virtual initiatives launched during the COVID-19 pandemic have continued and expanded due to their success and popularity.

Ways to Stay Connected:

Join a virtual support group — Many offer regular meetups where you can connect with others who understand your experience. PDConversations offers peer-led discussions.

Connect with the PD Solo Network — This virtual community is specifically designed for people with Parkinson’s who live alone. It’s a safe space to exchange ideas, resources, and encouragement with others navigating similar challenges.

Attend online wellness programming — The Parkinson’s Foundation offers PD Health @ Home programs, including Wellness Wednesdays and Fitness Fridays with expert-led exercise, mindfulness sessions, and educational webinars.

Volunteer your time and skills — Giving back builds purpose and connection. Sites like VolunteerMatch can help you find virtual or local opportunities.

Explore phone-based connection servicesWell Connected offers telephone-based programs where you can meet new people through conversation, classes, and discussion groups—no computer required.

Try telemedicine for specialist care — Video visits with neurologists and movement disorder specialists are now widely available. Research shows telemedicine delivers high patient satisfaction and clinical outcomes comparable to in-person visits, while reducing travel burden. Services like Synapticure offer comprehensive virtual neurological care across all 50 states.


New Technology for Independent Living

The technology landscape for Parkinson’s management has transformed significantly in recent years. Wearable devices, smartphone apps, and specialized tools now offer continuous, real-time monitoring of both motor and non-motor symptoms—supporting personalized treatment and more accurate tracking of disease progression.

Helpful Technologies to Consider:

Symptom Tracking Apps — The American Parkinson Disease Association offers a free Symptom Tracker for iPhone (available in English and Spanish) that records motor and non-motor symptoms, includes an interactive medication tracker, and creates reports to share with your care team.

Medical Alert Systems with Fall Detection — Given that approximately 60% of people with Parkinson’s fall each year (double the rate of age-matched peers), wearable alert devices with automatic fall detection can provide peace of mind and rapid emergency response.

FDA-Approved Wearables — Several devices are now conditionally recommended for remote Parkinson’s monitoring, including PDMonitor, Personal KinetiGraph (PKG), STAT-ON, and Kinesia 360. These track tremor, bradykinesia, dyskinesia, and gait in daily life and share data with your healthcare team.

Smart Shoes for Gait — FDA-approved NUSHU smart shoes use real-time vibrotactile feedback to analyze gait and provide instant cues, helping with freezing episodes and mobility challenges.

Speech Aids — Devices like SpeechVive automatically trigger the brain to speak louder and more clearly, improving communication for those with speech difficulties. It’s covered by Medicare, the VA, and many commercial insurance plans.

Smartwatch Integration — Apps like NeuroRPM and Strive PD connect with Apple Watch to track the complete range of PD symptoms, set medication reminders, and communicate data to care providers.


Practical Tips for Independent Living

Set Up Your Space for Success

Living alone gives you the freedom to design your environment around your specific needs. Work with your doctor to schedule a Home Safety Evaluation—an in-home occupational therapist assessment that provides personalized recommendations. Use the Parkinson’s Foundation Home Safety Checklist to identify and reduce risks.

Key modifications to consider:

  • Install grab bars in bathrooms and along hallways
  • Remove loose rugs and tripping hazards
  • Improve lighting throughout your home, especially in hallways and stairways
  • Arrange furniture to create wide, clear walking paths
  • Keep frequently used items within easy reach at waist height
  • Choose chairs with firm cushions, straight backs, and sturdy armrests
  • Consider single-floor living arrangements if stairs become challenging

Plan Your Days Around Your Energy

Schedule your most important tasks and activities during “on” times when medications are working best and you typically feel your strongest. Use timers or smartphone apps to keep medication routines on track—consistency is crucial for symptom management. Try not to over-schedule by planning for both “good” and “tough” days.

Keep Helpful Tools Handy

Simple adaptive tools can make daily tasks easier:

  • Weighted utensils and easy-grip cups for meals
  • Button hooks and zipper pulls for dressing
  • A pair of pliers to help open jars and packaging
  • Large-button phone adapters and voice amplifiers
  • Smaller containers for frequently used items (easier to handle than gallon jugs)

Prioritize Fall Prevention

Falls are a major source of disability in Parkinson’s, with risk factors including prior falls, freezing of gait, postural instability, orthostatic hypotension (blood pressure drops when standing), and cognitive changes. Protect yourself with these strategies:

Take your time — Move slowly and deliberately when sitting, standing, or turning corners.

Widen your stance — Take bigger steps for better stability.

Keep hands free — Limit distractions and avoid multitasking while walking.

Use fall detection technology — Medical alert systems can bring help quickly in emergencies.

Exercise regularly — Balance training, strength exercises, and physical therapy are among the most effective fall prevention strategies.

Stand up slowly — Rise in stages to prevent blood pressure drops that can cause dizziness.

Lean Into Your Support System

Even if you can manage independently, it’s okay—and wise—to ask for help. Save your energy for the things that bring you joy. Keep a list of people you can reach out to for assistance when needed, and don’t wait until you’re overwhelmed to use it.

Explore Transportation Options

If driving isn’t safe or possible, research alternatives before you need them:

  • Public transit systems with accessibility features
  • Ride-sharing services like Uber and Lyft
  • Community shuttle programs for seniors
  • Medical transportation services covered by Medicare or Medicaid
  • Volunteer driver programs through local nonprofits

Planning Ahead for Peace of Mind

Living alone comes with a responsibility to look after yourself—both now and in the future. It’s never too early to start planning your care preferences. Consider what type of care environment you’d prefer as your needs change. Would you choose in-home care, assisted living, a continuing care retirement community (CCRC), or another arrangement?

Important planning steps:

Designate a health care proxy — Assign a trusted individual who can speak on your behalf if you become unable to make medical decisions.

Document your wishes — Complete advance directives and share them with your medical team and loved ones.

Visit care options early — Tour facilities before a transition becomes necessary. This reduces stress and allows time for thoughtful decisions rather than “starting cold” after a hospitalization.

Learn about palliative care — Familiarize yourself with supportive care options, including hospice, so you know where to turn if needs arise.

Consider a Senior Move Manager — These professionals can help with decisions and logistics if and when relocation becomes necessary.

Remember: asking for help doesn’t mean giving up independence. In fact, choosing the right kind of support at the right time allows you to stay independent longer.


We’re Here to Support You

At All Heart Home Care, we serve clients across San Diego County who are living alone with Parkinson’s disease. Our compassionate caregivers provide personalized support, including personal care, medication reminders, companionship, exercise encouragement, and home safety. We understand the unique challenges of living with PD and are here to help you maintain your independence and access the support you need.

You don’t have to walk this journey alone. Call us today at (619) 736-4677 to learn how we can help you continue living life on your terms—with dignity, support, and heart.


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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.

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:

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):

Data in Transmission (In Transit):

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:

Caregiver Access:

Staff Access:

Audit Trail:

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:

Security Rule Compliance:

Breach Notification:

Business Associate Agreements:

Continuous Backup & Disaster Recovery

Automated Backups:

Redundancy:

Disaster Recovery Plan:

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:

Monitoring:

If the system goes down:

Multi-Factor Authentication (Optional)

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

Mobile Device Security

Caregiver Phones:

Your Devices:

Security Incident Response

In the extremely unlikely event of a security concern:

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

Emergency Contact Information

Medical Conditions & Health History

Mental Health & Cognitive Status

Medications & Supplements

Mobility & Transfers

Personal Care Routines

Meal Preparation & Dietary Needs

Daily Routines & Schedules

Activities & Engagement

Home Environment Details

Transportation & Driving

Additional Important Information

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:

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:

Narrative Format:

Each entry follows this structure:

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.