My PD Story

My Parkinson’s Journey: Bridging Caregiving and Nursing

For more than 30 years, I have dedicated my life to the nursing profession. I have navigated complex clinical scenarios, mentored new nurses and witnessed the evolution of healthcare firsthand. However, seven years ago, my relationship with nursing changed forever when my mother was diagnosed with Parkinson’s disease (PD).

Stepping into the role of a caregiver for a loved one with PD was a humbling revelation. Despite my decades of experience, I quickly realized that there was a significant gap in my knowledge. One of the most striking lessons I learned — and one I emphasize to every clinician I meet — is that Parkinson’s is not a uniform diagnosis.

There is a common adage in the community: "If you've met one person with Parkinson's, you've met one person with Parkinson's." This "snowflake" nature of the disease means that no two people present the same way. While one individual may contend with resting tremors, another might face "frozen" gait, severe rigidity, or non-movement or hurdles such as profound anxiety and sleep fragmentation.

The trajectory of the disease is equally idiosyncratic, with some people with PD maintaining stability for years while others face a more aggressive decline. This unpredictability demands a level of personalized nursing that standard hospital protocols rarely accommodate.

The Invisible Weight: The Caregiver Experience

Caring for a loved one with PD is a grueling marathon that tests both physical and emotional limits. Beyond the clinical symptoms, caregivers carry a heavy, often invisible burden including:

• Emotional Resilience: It is incredibly difficult to witness a parent’s loss of independence. This transition often leads to "anticipatory grief," where we mourn the person they were while still providing care for who they are now.
• The Medication Vigil: Managing PD requires strict adherence to medication schedules. A delay of just 15 minutes can trigger "off" periods, leaving a person with PD to experience a frozen episode or distress. This puts the caregiver in a state of constant, high-stakes alertness.
• The Role of Advocate: Caregivers are the vital bridge between the patient and the medical team. We must often translate subtle daily changes into clinical terms to ensure the healthcare provider truly understands the patient’s reality.

Professional Growth and the Safra Program

My turning point came when I was accepted into the Parkinson’s Foundation Edmond J. Safra Nurse Educator Program. I attended a transformative workshop at Pennsylvania Hospital that provided the deep clinical insights and practical resources I had been searching for. This experience, combined with invaluable resources from the Parkinson’s Foundation, instilled in me a new sense of mission.

I knew I had to take this specialized knowledge and share it with my fellow nurses who, like me, may be caring for PD patients without the specific training they need.

Parkinson’s Disease 101 for Nurses in All Settings

This gap in education is why I am developing "Parkinson’s Disease 101 for Nurses in All Settings." This self-learning module is designed to empower nurses with the foundational knowledge required to provide safe, empathetic and effective care for people living with Parkinson’s, regardless of the clinical environment.

To complement this education, I have also developed a Parkinson’s Disease Toolkit — a practical resource to help clinicians manage the day-to-day complexities of this condition.

My mother’s journey has taught me that while medicine is vital, understanding and specialized care are what truly improve quality of life. I am honored to use my 30 years of nursing experience and my seven years as a daughter and caregiver to ensure that no nurse feels unprepared when a patient with Parkinson’s is in their care.

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