International Caregivers Day “The Full Picture of Car”
While it’s vital to recognize the generosity of caregivers, we also need to shine a light on people with Parkinson’s who navigate their journey without a dedicated care partner.
To start this reflection, we're sharing five illustrations of real care partners. Their compassionate and unwavering support exemplifies how crucial a care partner can be in navigating the many challenges of Parkinson's disease. These images are not meant to romanticize caregiving; rather, they are meant to ground our conversation in reality: care comes in many forms, and all of them deserve attention.
While some are fortunate to have this type of support, many are not. This reality should be a catalyst for action, not a cause for division. To further this reflection, we're also sharing the stories of three individuals—one of whom is a composite based on real people—who face Parkinson's without a traditional caregiver.
People Who Have a Caregiver
Bernard & Denise Coley story
Denise Coley, who lives with Parkinson's in Morgan Hill, CA, USA (diagnosed 2018), often struggles with appetite. Her husband, Bernard Coley, creatively prepares "showcase plates" to entice her to eat, proving that sometimes, you taste with your eyes first.
Sheena and Andy Oddy
My husband, Andy Oddy, 67, was diagnosed with Parkinson's in August 2023. We moved to Ilfracombe, UK, in October 2022 for the sea, and Andy still enjoys surfing when the waves are good and it's not too cold. A recent two-hour party boat trip brought him immense joy, reminding us of life before his diagnosis. Though Andy's appointments and exercise classes now shape our days, we're committed to living fully, with a six-week tour of Thailand on the horizon. We've also found a supportive community, meeting monthly with friends from Parkinson's UK's Northern Devon Branch at The Ilfracombe Café, which I host.
Juan Manuel Rivero & Paqui Ruiz
Paqui Ruiz was diagnosed with Parkinson's Disease in 2012, on her wedding anniversary. She lives on the island of Tenerife, Canary Islands, Spain, with her husband, Juan Manuel Rivero. Juan is a devoted caregiver, helping Paqui with house cleaning, medication management, and cooking. He also lovingly supports their children. Juan encourages Paqui to persevere; he is her steadfast guide, support, and the love of her life.
Kat and Ken Hill
Kat Hill, a nurse practitioner and midwife from Portland, Oregon, was diagnosed with Parkinson's in 2015 when she was 48. She and her husband, Ken Hill, have been married over 35 years and have always been in love. They've embraced a unique lifestyle, living in their Airstream trailer like a cabin on their Columbia River Gorge property, where they've been clearing felled trees and cultivating the oak forest. As Kat's Parkinson's symptoms have progressed, Ken has become an even more active partner. He's made modifications to their trailer to improve her comfort and willingly takes on more responsibilities, especially with mechanical issues, allowing Kat to step back when needed.
Michel and Earla Dawn Legault
Michel and Earla Dawn Legault of Harrison Hot Springs, British Columbia, share a love for the outdoors and each other that spans over 40 years. Earla remembers her shorter steps quickening to match Michel's long strides in their early days, which is when they started holding hands. Michel was 64 when he was diagnosed with Parkinson’s in 2018. Though their walks are now shorter and less frequent, their bond to nature and each other remains strong. They've adapted by enjoying "walkabouts" in their yard, admiring their garden's growth—still hand-in-hand
People Living with Parkinson’s Who Do Not Have a Caregiver
Joanna Byers
Diagnosed with Parkinson's in 2021, I'm a 60-year-old living independently in Northwest Ohio to be near my children. I work full-time, live alone, and manage well, though my children help with tasks like hanging pictures or assembling furniture. While I value my independence and the activity that comes with managing on my own, occasional assistance with things like applying lotion or changing sheets would be nice. I've adapted by using grocery delivery and curbside pickup to save time and energy, especially in winter. Living in an apartment simplifies maintenance and cleaning, and cooking for one is easy. Due to the physical discomforts of Parkinson's, sharing a home isn't ideal for me.
Devon
Devon, 47: Diagnosed at a young age, Devon lost contact with much of his social circle as his symptoms became more visible. Without a stable income or housing, he's unable to afford private care and struggles to access consistent medical support while navigating the shelter system.
Ido Simonand
I'm Ido Simonand, an 82-year-old from Israel who has been living with Parkinson's disease for the past five years. Despite the daily challenges, I am committed to staying active through physiotherapy and hydrotherapy. My academic background is in stem cell research; I earned my Ph.D. from the Weizmann Institute of Science, and it's fulfilling to know that the cells I studied are now being applied in clinical cures.
The following is based on a composite of real people.
A Call for Inclusive Support
Let's widen our view to include those navigating illness alone. Their resilience should not be a substitute for the support they need. No one should have to face illness alone, and no caregiver should be left without emotional or practical support.
We urge policymakers, healthcare providers, and community leaders to expand care options for all. This means supplementing informal care with professional services and ensuring that those without partners are not left behind. True compassion is never selective.