Prescription of Love, Mindfulness, and Hope in Parkinson Disease Care: Esther Labib-Kiyarash, MSHA, CPHQ

WATCH TIME: 6 minutes | Captions are auto-generated and may contain errors.

"I've been to a lot of neurologists, easily half a dozen, if not more, by now, and you definitely see which ones have hope and which ones don't. I've seen it in their eyes, where I've been trying to give them hope for me, and I know it's because they've seen a lot of people with this disease have very, very arduous paths. I realized that. But if they don't have hope for us, how are we supposed to have hope for ourselves "

Patient-centered care has been associated with positive outcomes for individuals with Parkinson disease (PD), though recent studies suggest it may not be consistently implemented across current health care systems. To better understand patient perspectives, a recent qualitative study published in Movement Disorders Clinical Practice collected advice from patients with PD for health care providers, family and friends, and newly diagnosed patients. Among the 275 patients with PD who responded to open-ended questions in the online survey, investigators identified 3 qualitative themes.¹

The first theme emphasized improving care and communication, urging health care professionals to balance clinical demands with compassion, and family and friends to support patients while respecting their autonomy. The second theme focused on empowering individuals with PD through increased knowledge about the disease and available care options. The third theme underscored the importance of prioritizing well-being and fostering meaningful connection. Collectively, these findings revealed ongoing gaps in addressing the full range of patient needs in both clinical settings and personal relationships, highlighting the value of integrating patient voices into care planning.

Expanding on this patient-centered perspective, patient advocate Esther Labib-Kiyarash, MSHA, CPHQ, led a Conversation Corner on a “prescription” beyond medication for patients living with the disease at the 4th Annual Advanced Therapeutics in Movement and Related Disorders (ATMRD) Congress, held by the PMD Alliance from June 27-30, 2025. During the Congress, Esther, advisory board member of the Parkinson's Foundation and patient with young onset PD, spoke with NeurologyLive^® about the emotional and psychological aspects of navigating life with PD. Reflecting on her own patient journey, she highlighted the importance of love, present-moment awareness, and hope in potentially transforming the care experience for individuals with PD.

Click here for more coverage of ATMRD 2025.

REFERENCES
1. Kinger SB, Moran J, McLarin A, et al. We Hope You're Listening: Qualitative Study of Advice Given by Individuals with Parkinson's Disease. Mov Disord Clin Pract. 2024;11(11):1427-1433. doi:10.1002/mdc3.14209
2. Labib-Kiyarash E. Conversation Corner: What Does a Prescription for Parkinson’s Look Like? A Patient's Perspective. Presented at: ATMRD; June 27-30, 2025; Washington, DC.