My PD Story

I was sitting on the floor of my childhood living room with my sister, both of us home for the holidays, when we first heard the words, “Dad has Parkinson’s.” 

I had known something was awry — sideways looks between my parents when we would inadvertently comment on what we would soon learn were Parkinson’s symptoms, including observations like, ‘why does it take Dad so long to get his wallet out of his pocket now?’, mysterious doctors’ appointments and cryptic texts I’d seen between my mom and her sisters.  

I wasn’t entirely unfamiliar with Parkinson’s disease (PD) and an unsettling montage of images played through my head: my best friend’s grandmother trembling as she sat in front of us at church, my great uncle struggling to steady his hand while eating fruit salad at a family reunion, Anne Hathaway in the movie Love and Other Drugs. 

I soon after graduated from nursing school and began looking for ways to improve care and quality of life for people with Parkinson’s both in and out of the hospital. I became involved with the Parkinson’s Foundation first through the resources offered for healthcare professionals and care partners, and then as a volunteer.  

As a former collegiate runner, it felt natural to combine two of my deepest passions and I ran the NYC Half Marathon as a Parkinson’s Champion for the first time in 2023. I ran it again last year in the company of my husband and two best friends, raising nearly $11,000. This March, Team Dave is going cross country for the LA Half Marathon!  

I have also served on the Connecticut Moving Day planning committee, as a community grant reviewer, and as a Parkinson’s Foundation Ambassador and team captain for Parkinson’s Revolution — go team SPINemet (I’m still proud of this one)!  

This year, I was selected to serve a three-year term on the People with Parkinson’s Advisory Council. This advisory council ensures that the perspective of people living with Parkinson’s and their care partners is integrated into the Foundation’s program development and priority setting. I am personally working closely with the Hospital Care Initiative team to make the hospital a safer place for people with Parkinson’s.  

As an emergency department Registered Nurse (RN), I care deeply about hospital care standards, increased education for healthcare providers on PD management, family-centered care and caregiver support and expanded access to specialized care for individuals faced with geographic, financial, or functional barriers.  

People with PD are 1.5x more likely to be hospitalized than those without the disease and are especially vulnerable to complications during hospitalization arising from stress, infections, fatigue, sleep disturbances, surgeries and changes in medication.  

This spring, my emergency department is joining the next cohort of the Foundation’s Hospital Care Learning Collaborative. I am so excited to work alongside our providers and administration to implement new guidelines and safety measures that will make a profound difference in patient experience and outcomes. I am thankful to share this passion with my Parkinson’s Foundation family. 

As a care partner, I remain committed to bettering life for those living with Parkinson’s. Last year, I decided to pursue a PhD in Nursing. My research at the University of Connecticut focuses on predictors of health behaviors in people with Parkinson’s. My primary interest is improving patient education at the time of diagnosis through patient activation. Patient activation refers to the knowledge, skills, confidence, and willingness of individuals to manage their health.  

When my dad was first diagnosed, he and my mom were overwhelmed with the number of decisions they had to make relative to the information (or lack thereof) they were given. I am interested in educational programs and materials that can equip those newly diagnosed with the tools they need to live well with PD.  

My husband and I live in Connecticut while my parents remain in Atlanta, GA. The distance is always hard, and Parkinson’s adds a unique challenge. It’s easy to feel like you aren’t doing enough.  

I have found solace and joy in volunteering with the Foundation, pouring my heart into my research, and frequent FaceTimes with my parents to show off my new puppy and to discuss my dad’s most recent pickleball win.  

Parkinson’s changed our lives, but it doesn’t define it. I saw this quote in a book recently (The Measure by Nikki Erlick) and it stuck with me: “It sucks to be us. But at least there is an us.” 

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