The Path Forward
Family Foundations
My father was a surgeon, a fact well-known to most people who know me. Because of him, hospitals always felt like home. We are shaped by our environments, and mine was unique. My mother was a teacher, but more importantly, she deeply believed in the power of healing. After the unexpected loss of my young brother to a routine tonsillectomy, both my parents were engulfed by grief. In response, my father brought home a book for my mother: “The Sleeping Prophet” by Edgar Cayce, a prolific, turn-of-the-century medium and new age faith healer. Why would a surgeon read, and gift, such a book? Because he believed in healing, too. He especially believed in the mind’s ability to heal the body. In our household, there was no separation between these ideas—faith and science, surgery and mind over matter, all coexisted harmoniously. We valued questions and encouraged rigorous debate, with the only rules being that you had to do your homework, argue your side well, not take things personally, and admit when you were wrong.
Asking Questions and Navigating Healthcare
I have always felt comfortable asking doctors questions, a habit that started as soon as I could speak. Few patients are like me, and they shouldn’t have to be. Most people experience the “white coat” phenomenon—a sense of intimidation when interacting with doctors. For someone who used to play dress-up in her dad’s white coat, it means something very different. Doctors can be intimidating; rushed, distracted, and often brisk and to the point. We see them for only a few minutes, so we must make the most of that time. From intake questions about weight or alcohol consumption, the line between truth and fiction can become blurry. Discussing topics like cannabis or new devices seen on YouTube often feels best left unsaid. If I do ask, the response is usually dismissive or simply “I don’t know.” This is surprising, given the abundance of gadgets, protocols, and miraculous recovery stories that fill my Facebook feed. Why don’t doctors know about these things? It’s likely because most patients believe doctors don’t get paid to care. But my dad cared deeply, often missing Christmas dinners to be on call. The real reason is more practical—most doctors don’t get their information from Facebook or YouTube. Their patients do.
The Role of Doctors and Hope
Doctors cannot know everything, nor can anyone else. But with the white coat comes responsibility—a sacred trust to do no harm. When treating incurable neurodegenerative diseases, this duty extends to nurturing not only the body but also hope. When patients ask about alternative therapies, the initial reaction is often to dismiss them. However, it is important to ask patients why they are searching for alternatives. The answer is consistently rooted in unmet needs: eroded hope, limited access, long wait times, feeling unseen, chronic pain, lack of sleep, anxiety, depression, failed doses, random off periods, and uncontrolled dyskinesia. These challenges are common among patients. Yet, most clinicians’ express satisfaction with available therapies, leading to a disconnect. Patients may only see their doctor once, twice, or three times a year—if they are lucky. A lot happens between visits, too much to discuss in just 30–45 minutes. As a result, people turn to the internet, Facebook groups, and any source offering hope.
Trust and Moving Forward
I don’t expect anything magical from my doctor. What I do value is leaving each visit with all my questions answered, a plan A and a plan B, and, most importantly, hope for the future. I trust my doctor because he listens and provides solutions. I wish everyone had that experience. As a person living with Early Onset Parkinson’s and as a social media influencer, I have tried to remind people not to trust everything they see online and to heed my mother’s advice: if something seems too good to be true, it probably is.
While at the WPC 2026, I will be part of session looking at the science and misconceptions of marijuana, stem cells and nutritional supplements, three areas that are rife with confusions and snake oil salesmen hawking online. Refocusing the community on what is fact and what is fiction. Introducing this urgently needed discussion with trusted experts in their respective fields is an honor, being the voice of the patient is a humbling endeavor, one I never imagined for myself, and I take my responsibility to the Parkinson’s Community very seriously. Speakers Roger Barker, Benzi Kluger, Fiona Lithander will do what they do best, giving information validated by science and professional experience. “Alternative Treatments for Parkinson’s: Identifying Hope Amongst the Hype” will take place Wednesday May 27th at 3:45 PM, our moderators will be Rajesh Pahwa and Chirine Katrib. I look forward to seeing you there and welcoming you all to my beautiful country.
The future of Parkinson’s care will not be built by patients alone, nor by clinicians alone. It will be built in the space between them. Stay open. Stay grounded. Stay in it together. We all share the same goal: to reduce suffering and maximize quality of life.
Esther Labib-Kiyarash (USA) is a Parkinson’s advocate living with YOPD, former hospital administrator, a mother of two young kids, a social media influencer (and a WPC 2026 Content Creator!), and a Board member at PD Avengers. She will be part of the session on Alternative treatments for Parkinson’s: Identifying the Hope from the Hype at the WPC 2026 on Wednesday, May 27 at 3:45 PM. Be sure to catch the talk! Find her here: TikTok I Instagram I Facebook
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®