How Not To Be The Average With Parkinson's
Gaia Forlani
11,513 views
Melba and Tristan are both living with Parkinson’s, but their journeys with the disease look very different.
In this episode, they join Gaia for an honest conversation about diagnosis, fear, family, training, resilience, and what it really means to keep moving forward with Parkinson’s.
Together, they explore why a diagnosis shouldn’t automatically make your world smaller, the difference between simply being active and truly training, building the right care team, staying disciplined when motivation disappears, and focusing on what remains within your control.
At the heart of the conversation is an idea Melba calls “active hope.”
“We can all hope. But you have to put legs on that hope.”
Because hope isn’t just about believing things can be better. It’s about putting in the reps, continuing to challenge yourself, and building the strongest, most resilient version of yourself possible.
WHAT WE COVER:
Personal Stories & Diagnosis: Melba and Tristan share their unique experiences receiving a Parkinson's diagnosis and the initial emotional impact (0:58 - 3:51).
Redefining the Approach: The group discusses the limitations of traditional, passive PD care and the necessity of high-intensity, structured training to manage the condition's progression (7:01 - 8:31, 31:55 - 34:42).
Active Hope & Mindset: Melba introduces the concept of "active hope," emphasizing that hope must be supported by consistent, disciplined action and hard work (21:16 - 21:38, 48:46 - 49:00).
Building a Care Team: The importance of moving beyond neurologists to assemble a comprehensive team, including trainers and specialized therapists, is highlighted (29:32 - 31:24, 1:04:41 - 1:08:29).
AI as a Tool: Tristan shares how he utilizes Artificial Intelligence as a valuable, modern tool to coordinate care and bridge information gaps (51:12 - 52:37).
Looking Forward & Mission: Both guests discuss their goals, including advocacy and maintaining long-term physical and mental health (47:11 - 50:08, 1:08:38 - 1:11:58).
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.co...
🏋️ 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.co...
STAY CONNECTED WITH US:
Instagram: @gaia.forlani.ppc
Facebook: Gaia Forlani
11 Comments
I live alone and and have a relatively busy life or as busy as I want to be.My GP is fabulous,, and my neurologist. Is the best in Canada.
I train, sleep and eat like an athlete: eight 45-minute cardio sessions plus two resistance sessions each week. I eat organic where practical, avoid dairy and processed foods, eat little meat and drink filtered water. Despite all of that, my daily C/L dose has gone from 300 mg to 800 mg in just ten months. I see my movement disorder specialist every three months just to keep up. The pace of change feels awful and frightening, especially when I’m still so young.
Tristan, thank you for recognising that everyone’s journey is different. I felt seen.
Melba, I loved your positive outlook. After watching, I left the PD Facebook groups I’d joined. The Australian groups are supportive and positive, but right now I need less time immersed in other people’s suffering. “Gratitude is a gift, even when things are bad” is something I’m taking away from this. Thank you for helping me return to what matters.
My one concern—with comments from Melba, books by Steve Yellen and others—is how the message that exercise can “delay” or “slow” PD can land for those of us whose symptoms are worsening quickly despite doing everything we can. I value exercise enormously; my routine reflects that. But I’d love more room in that conversation for people like me. When lifestyle is emphasised without acknowledging that variability, it can feel as though progression means we haven’t tried hard enough.
I’m not lazy. I’m unlucky.
When I was diagnosed last November, I joked with my 80-year-old father that, because I’d never been normal or average, I’d get either three years or thirty. Underneath the joke was fear. I don’t know what my future holds, but right now it feels as though I’ve drawn the short straw.
That’s why both hope and recognition matter so much. Thank you for a conversation that gave me some of each.
https://youtu.be/wr4kqLL9CRM?si=aZa3iUkpbQcc2Xq7
How Not To Be The Average With Parkinson's
Gaia Forlani
11,513 views
Melba and Tristan are both living with Parkinson’s, but their journeys with the disease look very different.
In this episode, they join Gaia for an honest conversation about diagnosis, fear, family, training, resilience, and what it really means to keep moving forward with Parkinson’s.
Together, they explore why a diagnosis shouldn’t automatically make your world smaller, the difference between simply being active and truly training, building the right care team, staying disciplined when motivation disappears, and focusing on what remains within your control.
At the heart of the conversation is an idea Melba calls “active hope.”
“We can all hope. But you have to put legs on that hope.”
Because hope isn’t just about believing things can be better. It’s about putting in the reps, continuing to challenge yourself, and building the strongest, most resilient version of yourself possible.
WHAT WE COVER:
Personal Stories & Diagnosis: Melba and Tristan share their unique experiences receiving a Parkinson's diagnosis and the initial emotional impact (0:58 - 3:51).
Redefining the Approach: The group discusses the limitations of traditional, passive PD care and the necessity of high-intensity, structured training to manage the condition's progression (7:01 - 8:31, 31:55 - 34:42).
Active Hope & Mindset: Melba introduces the concept of "active hope," emphasizing that hope must be supported by consistent, disciplined action and hard work (21:16 - 21:38, 48:46 - 49:00).
Building a Care Team: The importance of moving beyond neurologists to assemble a comprehensive team, including trainers and specialized therapists, is highlighted (29:32 - 31:24, 1:04:41 - 1:08:29).
AI as a Tool: Tristan shares how he utilizes Artificial Intelligence as a valuable, modern tool to coordinate care and bridge information gaps (51:12 - 52:37).
Looking Forward & Mission: Both guests discuss their goals, including advocacy and maintaining long-term physical and mental health (47:11 - 50:08, 1:08:38 - 1:11:58).
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.co...
🏋️ 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.co...
STAY CONNECTED WITH US:
Instagram: @gaia.forlani.ppc
Facebook: Gaia Forlani
Instead what I did was continue with my long (4hr walks), cycling, t’ai chi. I added strength and stretch programmes, ballet and boxing.
This year has been tough because my iron levels dropped an it’s only now my GP has given me strong iron tablets things are improving. The more I learn the more I know we must treat the whole body and importantly not write off the active people in their 40s/50s/60s.