An interview with Ripley Fricano, Nursing & the People with Parkinson’s Advisory Council (PPAC), Parkinson’s Foundation on December 31, 2024.
Please tell me a little about your background.
My name is Ripley Fricano Hensley. I’m an Emergency Department Registered Nurse, doctoral student, and daughter to one really cool guy with Parkinson’s disease. When my dad, Dave, was diagnosed in 2017, I began looking for ways to improve care and quality of life for people with Parkinson’s both in and out of the hospital and decided to pursue a PhD in Nursing. My research at the University of Connecticut focuses on predictors of health behaviors in people with PD, particularly the roles of comprehensive education at time of diagnosis and patient activation. I’m also passionate about hospital care standards, increased education for healthcare providers on PD management, family-centered care and caregiver support, expanded access to specialized care for individuals faced with geographic, financial, or functional barriers, and greater PD awareness and visibility.
Can you tell me more about your Advocacy?
I began working with the Parkinson’s Foundation as a Parkinson’s Revolution team captain – go Team SPINemet! I have since served on the Connecticut Moving Day planning committee and as a community grant reviewer, and as a Parkinson’s Foundation Ambassador and two-time Parkinson’s Champion (and soon to be three-time, with the LA Half in March). This year I was selected to serve a 3-year term on the People with Parkinson’s Advisory Council for the Parkinson’s Foundation, which is a huge honor and privilege. PPAC 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 working closely with the Hospital Care Initiative team to make a hospital a safer place for people with Parkinson’s. This spring, my emergency department is joining the next cohort of the Hospital Care Learning Collaborative. I am so excited to work alongside our providers and administration to implement new guidelines and safety measures that will hopefully make a profound difference in patient experience and outcomes.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My primary passion 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 – essentially both a byproduct of effective self-management and a way to gauge readiness. When my dad was first diagnosed, he and my mom were overwhelmed with the amount 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 newly diagnosed patients with the tools they need to live well with PD.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
I hope my work as an advocate and researcher inspires patients to take control of their disease – to understand their options, to know what each medication does, to internalize the importance of physical activity, sleep, diet, and nutrition. I want people living with Parkinson’s to feel empowered, hopeful, and in control – not overwhelmed.
What type of training and how long are the programs?
One program that particularly interests me is the APDA PRESS program. It’s an 8-week course designed to empower newly diagnosed patients (within the past five years) and their care partners by providing education on Parkinson’s disease management and effective coping strategies. More information can be found on their website: https://www.apdaparkinson.org/community/resources-support/pd-educational-programs/newly-diagnosed-program/. The Parkinson’s Foundation also offers a plethora of resources for those newly diagnosed.
What effect can your Advocacy have on an individual with Parkinson’s?
Professionally, empowering patients to take ownership of their health through education, support, and guidance can have profound effects on both their disease trajectory and their quality of life. In this way, patient activation in PD becomes not only a marker of patient engagement but also a key lever in improving clinical outcomes and ensuring that individuals living with PD are prepared to navigate the challenges of their disease. Personally, I hope my work as an advocate makes even one person feel less alone.
What would you like to see as a future goal for your Advocacy?
Let’s find a cure! And in the meantime, let’s make life the best it can be. This is a community with a lot of passion and who has a lot of fun.
What events do you participate in?
Primarily, I am very involved with the Parkinson’s Foundation. I serve as an ambassador and as member of PPAC, and fundraise through the Parkinson’s Champions. I also volunteer at Beat PD Gym (local to CT and NC but with virtual classes nationally) as an assistant fitness trainer and with fundraising events, such as their annual golf tournament. I am a regularly attendee as able at educational offerings as well, such as the APDA’s Annual Parkinson’s Education Conference.
I also want to note that joining Michael J. Fox’s Policy Network (https://www.michaeljfox.org/contact-your-policymakers) makes it easy to get involved with policy advocacy. For instance, prior to the signing of the National Plan to End Parkinson’s Act into law, they provided pre-written templates to make contacting your representatives a breeze. There’s no excuse not to join us in the fight!
How does this also assist the caregivers?
By equipping patients with the tools, they need to manage their PD, they set themselves up for success. Greater understanding and engagement in health behaviors leads to decreased symptom burden and improved quality of life. This benefits both the patient and their care partners.
How can someone get in touch? What is your website?
Either by email: anne.fricano@uconn.edu or LinkedIn: http://linkedin.com/in/rfricanohensley
How can others also become advocates for awareness?
Call me! Call George! Go through the Parkinson’s Foundation, the Fox Foundation, APDA, Davis Phinney – the options are endless. Get involved, whether that means a small donation here or there, or attending a local walk to start. It’s a really incredible community to be a part of.
In your opinion, what is the key to effective advocacy?
A sense of urgency, clear communication of facts, and building a strong community!
How can we better fundraise to support a cure for Parkinson’s?
We need to get creative and involve people that Parkinson’s does and does not affect – think the ALS ice bucket challenge or yogurt for breast cancer awareness. We need to go big and wide!
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I am a (somewhat) avid runner and spin class attendee. I love to spend time with my husband and our pets (2 dogs and 2 cats), our family, and our friends. I also enjoy trying new restaurants (especially Thai), reading, and planning trips (most recently Ecuador, which everyone should add to their bucket list!).
Why should people who don’t have Parkinson’s care about this?
Parkinson’s disease affects almost 11.5 million people globally. In the US alone, someone is diagnosed every 6 minutes – the Parkinson’s pandemic, experts have called it. Unfortunately, this means if you don’t know someone with Parkinson’s now, you probably will.
Have you had any family members or relatives affected by Parkinson’s disease?
My dad was diagnosed in 2017 and is currently living with Parkinson’s. My great uncle (my grandpa’s brother) and my husband’s grandpa also lived with Parkinson’s before they passed.
If you had one song that would tell us more about you or represent your life, which song would it be?
This is a hard one! The first that comes to mind in this context is Stand by You by Rachel Platten – pretty self explanatory if you listen to the lyrics and an absolute banger (a hit at the Parkinson’s Revolution ride)!
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I saw this quote in a book recently (The Measure by Nikki Erlick – worth the read) and it stuck with me: “It sucks to be us. But at least there is an us.”