Show Notes
Melba and Tristan are both living with Parkinson’s, but their journeys look very different. Melba was diagnosed five years ago after a lifetime of being incredibly active. Tristan was diagnosed just one year ago at 40, with three young children and a baby at home. In this episode, they join Gaia for an honest conversation about what happens after the diagnosis, from the fear and uncertainty to rebuilding confidence, setting big goals, and learning how to move forward. At the center of their conversation is an idea Melba calls “active hope.” Hope isn’t simply wishing things will get better. It’s training, nutrition, mindset, mindfulness, discipline, building the right support system, and continuing to show up even on the days when motivation isn’t there. As Melba puts it: “We can all hope. But you have to put legs on that hope.” Together, they challenge the idea that a Parkinson’s diagnosis should automatically mean doing less. They explore the difference between simply being active and truly training, why exercise needs to be individualized, and what it means to train like an athlete, not a patient. They also discuss family, vulnerability, discipline, building a multidisciplinary care team, the potential role of AI, and why the person living with Parkinson’s should remain at the center of their own care. WHAT WE COVER: Melba and Tristan’s very different experiences of being diagnosed with Parkinson’s
The fear, grief, and uncertainty that can follow a diagnosis
Why Parkinson’s should not automatically mean lowering expectations for what someone is capable of
The difference between being active and intentionally training
What it means to “Train Like An Athlete, Not A Patient”
Why Parkinson’s training should consider intensity, load, volume, duration, variety, and the individual
Building resilience and continuing to show up when motivation disappears
Melba’s concept of “active hope”
How Parkinson’s affects spouses, children, and the wider family
Protecting the relationship between partners instead of allowing it to become only patient and caregiver
Building a care team beyond the neurologist
Why the person living with Parkinson’s is the real expert on their own experience
How AI may support, rather than replace, clinicians, trainers, and care partners
Discipline, consistency, and focusing on what remains within your control
Setting big goals and refusing to let Parkinson’s automatically make life smaller
Why real hope requires action, effort, and putting in the reps
WHAT’S NEXT: 📧 Join our newsletter: Get Parkinson’s research, practical strategies, expert insights, and updates from Parkinson’s Performance Centre delivered straight to your inbox. 🏋️ Train Like An Athlete: Gaia’s work at Parkinson’s Performance Centre, and her belief that people with Parkinson’s can train like athletes, was the inspiration behind the Like An Athlete, Not A Patient podcast. If you’re interested in learning more about Gaia’s program and how PPC helps people with Parkinson’s train with purpose, explore the program HERE. STAY CONNECTED WITH US: Instagram: @gaia.forlani.ppc Facebook: Gaia Forlani SUBSCRIBE & REVIEW If this episode changed the way you think about Parkinson’s rehabilitation and the role you can play in your own care, subscribe to Like An Athlete, Not A Patient and leave a review. It helps more people with Parkinson’s, their families, caregivers, and the professionals supporting them discover these conversations.
More from Like An Athlete, Not A Patient
Dr. Shane Liddelow is a leading neuroscientist and researcher specializing in glial biology, neuroinflammation, and neurodegenerative diseases, including Parkinson's, Alzheimer's, and ALS. His groundbreaking research has challenged traditional views of how brain cells function and revealed how cells once thought to simply support neurons can actually contribute to their death. In this episode, he joins Gaia to explore a fascinating question: What if understanding Parkinson's requires us to look beyond the neurons themselves? Together, they discuss the critical role of astrocytes and microglia in maintaining brain health, how inflammation can transform normally protective cells into harmful ones, and why communication between different brain cells may be central to understanding neurodegeneration. They also explore the possibility of reversing harmful astrocyte states, the future of therapies targeting these cells, and how exercise, nutrition, and lifestyle may influence inflammation and brain health. But perhaps the most important message from this conversation is that the brain is not simply a collection of neurons. It is an interconnected system, and understanding how its cells communicate could fundamentally change how we approach Parkinson's treatment. While new therapies are still being developed, this research offers exciting possibilities for understanding and potentially influencing the processes that drive neurodegeneration. WHAT WE COVER: The role of astrocytes and microglia in brain health
Dr. Alfonso Fasano is a leading neurologist and researcher specializing in Parkinson’s disease, deep brain stimulation (DBS), neuromodulation, and freezing of gait. His work has contributed to advancing our understanding of Parkinson’s and the development of new approaches to treatment, including adaptive DBS. In this episode, he joins Gaia to explore how advances in Parkinson’s treatment can translate into better movement, greater independence, and improved quality of life. They discuss the latest developments in adaptive DBS, who may benefit from brain stimulation, and why even the most advanced technologies have limitations. They also explore the science behind freezing of gait, the complexities of neuroplasticity, and common misconceptions about levodopa and dyskinesia. Throughout the conversation, Dr. Fasano emphasizes that treatment is not simply about reducing symptoms. It is about creating opportunities to exercise, remain socially engaged, and continue doing the things that make life meaningful. He also shares powerful reflections from people who have lived with Parkinson’s for more than 30 years. WHAT WE COVER: • How adaptive DBS differs from traditional DBS• What adaptive DBS can and cannot improve• Who may be a good candidate for DBS• Why patient expectations matter before surgery• Why DBS is not a cure for Parkinson’s• The limitations of DBS and why it cannot eliminate all motor symptoms• How brain activity and beta waves relate to Parkinson’s symptoms• Why neuroplasticity is not always beneficial• The science behind freezing of gait• How multitasking and cognitive demands affect walking• Levodopa, dyskinesia, and common medication misconceptions• Why delaying medication can sometimes reduce quality of life• When Parkinson’s medication may be necessary• Why treatment adjustments require time and communication• The importance of trust between patients and neurologists• Why exercise and social engagement matter alongside medical treatment• The role of family and caregivers in DBS outcomes• Insights from Reprogramming My Brain, co-authored with Benjamin Stecher• What people living with Parkinson’s for over 30 years would tell their newly diagnosed selves WHAT’S NEXT: 📧 Join our newsletter: Get Parkinson’s research, practical strategies, expert insights, and updates from Parkinson’s Performance Centre delivered straight to your inbox.https://parkinsonperformancecentre.com/newsletter 🏋️ Train Like An Athlete: Gaia’s work at Parkinson’s Performance Centre, and her belief that people with Parkinson’s can train like athletes, was the inspiration behind the Like An Athlete, Not A Patient podcast. If you’re interested in learning more about Gaia’s program and how PPC helps people with Parkinson’s train with purpose, explore the program HERE:https://parkinsonperformancecentre.com/startprotocol STAY CONNECTED WITH US: Instagram: @gaia.forlani.ppc Facebook: Gaia Forlani SUBSCRIBE & REVIEW If this episode changed the way you think about Parkinson’s rehabilitation and the role you can play in your own care, subscribe to Like An Athlete, Not A Patient and leave a review. It helps more people with Parkinson’s, their families, caregivers, and the professionals supporting them discover these conversations.
Professor Elena Moro is one of the world’s leading neurologists specializing in Parkinson’s disease, movement disorders, and deep brain stimulation (DBS). Having trained in Grenoble, where modern DBS was pioneered, she has spent decades at the forefront of Parkinson’s research and care. In this episode, she joins Gaia to explore what it really means to treat the person with Parkinson’s, not just the disease. They discuss how DBS works, who may benefit, when to start levodopa, and common misconceptions surrounding Parkinson’s medication. They also explore an area that remains significantly under-researched: women with Parkinson’s, including hormones, menopause, pregnancy, and differences in treatment. Throughout the conversation, Professor Moro comes back to the importance of listening to the patient, focusing on quality of life, and taking a more holistic approach to Parkinson’s care. WHAT WE COVER: How deep brain stimulation (DBS) works Who may be a good candidate for DBS What DBS can and cannot improve Why electrode placement matters When to consider starting levodopa Why levodopa is not “toxic” Medication side effects to understand Why treatment should focus on quality of life Differences between Parkinson’s in women and men Hormones, menopause, pregnancy, and Parkinson’s Why women-specific Parkinson’s research is still lacking The role of exercise, sleep, diet, and rehabilitation Why family and caregivers matter in Parkinson’s care Equal access to Parkinson’s treatments Why there is no “magic pill” for Parkinson’s How close we really are to finding a cure
Dr. Nick Dennis is a Doctor of Physical Therapy and board-certified neurologic clinical specialist specializing in neurological rehabilitation. He is also the co-founder of NeuroStrength Network, a Parkinson’s exercise community designed to bridge the gap between physical therapy and long-term independence. In this episode, he joins Gaia to explore an important question: Are we underdosing exercise for Parkinson’s? Dr. Dennis explains why simply moving more can create initial progress, but why intensity matters as the body adapts. They discuss how strength and conditioning can complement physical therapy, what effective Parkinson’s training can look like, and how heart rate, wearables, and rate of perceived exertion can help measure whether someone is actually training at the right intensity. dr-gaia They also explore training for freezing of gait, posture and balance, what should happen after physical therapy ends, and why recovery is just as important as training hard. Ultimately, Dr. Dennis challenges the idea that Parkinson’s automatically means training less — while emphasizing that exercise should be individualized, progressive, and sustainable. WHAT WE COVER: Why exercise for Parkinson’s may be underdosed
Dr. Vanessa Milanese is an internationally recognized functional neurosurgeon specializing in movement disorders, deep brain stimulation (DBS), epilepsy surgery, and advanced pain interventions. Her work explores how the brain’s interconnected networks influence movement, cognition, emotion, and behavior — and how neuromodulation can be used to improve the lives of people with Parkinson’s disease. In this episode, she joins Gaia to break down deep brain stimulation — what it actually does, who may benefit, when someone with Parkinson’s should begin considering it, and what patients can realistically expect. Dr. Milanese explains how DBS can improve symptoms including tremor, rigidity, and bradykinesia, why timing matters, and how specialists determine whether someone may be a good candidate. She also discusses the importance of looking beyond a single area of the brain and understanding the networks and connections responsible for different symptoms. They also explore where DBS is heading next — from adaptive stimulation and advanced neuroimaging to increasingly precise, personalized approaches to targeting the brain. But the conversation goes beyond surgery. Dr. Milanese shares why she asks every patient about their goals, why listening matters just as much as technology, and why the ultimate goal of treatment is helping people get back to the lives they want to live. WHAT WE COVER: What deep brain stimulation (DBS) is and how it works