You can read part one of this blog series by clicking here.

The Danger of Minimizing Parkinson's Disease

At a recent Parkinson’s summit, I found myself in a conversation that left my skin crawling. A coordinator asked a person with Parkinson’s (PWP) how he was doing. The PWP smiled and said, “I’ve learned Parkinson’s isn’t that bad. In fact, I’d rather have Parkinson’s than colon Cancer.”

His opinion is, of course, his own, and I respect his right to feel that way. But as I listened, it struck me that he wasn’t just sharing his experience—he was trying out a narrative, one that minimized his condition. It felt almost like a test: Can I pass? Can I convince the world that I’m doing well enough that Parkinson’s doesn’t really matter?

This seemingly innocuous comment revealed a dangerous story, one that we in the Parkinson’s community need to address head-on. The narrative of “Parkinson’s isn’t that bad” is harmful—not just to the individual telling it, but to the entire community, and here’s why.

1. It Undermines the Urgency for Funding and Research

When people say “it’s not that bad,” the general public hears: This isn’t urgent. Policymakers and funding boards think: There are bigger priorities. Researchers might conclude: We’ll focus on other diseases that are more pressing.

The reality is starkly different. Parkinson’s disease (PD) is a degenerative neurological disease that affects every aspect of life. It doesn’t just cause tremors; it impacts movement, cognition, Sleep, emotional health, and more. It’s a disease that progresses relentlessly, with no cure in sight. But when we present it as largely manageable or a relatively minor inconvenience, we downplay its severity and allow the world to look away.

For real change—better treatments, more research, and, ultimately, a cure—we need to tell the full story of PD. That means sharing the highs and the lows, the victories and the struggles. And, the longterm truth that there is no cure and the symptoms will get worse as you age – much worse. I speak from the position of a Caregiving son who has watched my dad deal with PD for 24 years. He was diagnosed in 2001. Yes, there was a relative “honeymoon period” (<-- terrible term, by the way) where we thought, “it's not that bad”. As he's aged, PD has robbed him of most of what he enjoys: golf, driving a car, socializing, even eating. Now, you can say, well, how much of that is Aging? It's a fair question. My dad was diagnoed at 57. He's now 80. His father lived quite well and very independently, driving, playing golf, and even being quite the late-in-life ladies man up until he was 94. Genes are not guaranteed anyone, but it's safe to say without PD, my dad would very likely be enjoying a dramatically different life as an 80 year old. It's not like PD shields you from getting other diseases. Doctors frequently comment on how good his body looks except for what PD is doing to it. The daily mental beatdown of everything PD has taken from my dad has taken a significant toll on his quality of life. Yes, n=1, but he is not alone. Sugarcoating the full reality of PD serves no one, least of all the people who desperately need advancements in care.

2. Comparative Suffering is a Trap

Brene’ Brown wrote: “Comparative suffering is a function of fear and scarcity.”

The PWP at the summit justified his comment by comparing PD to colon cancer, saying he’d rather have the former. This is a classic example of comparative suffering—and it’s both nonsense and very frequently used tactic by doctors trying to placate PWP.

Comparing diseases is like trying to match snowflakes in a storm—no two are exactly alike. Colon cancer is often acute, requiring aggressive treatment that can be grueling but sometimes leads to remission. According to the American Cancer Society, if the colon cancer is localized (often the result of early detection), the five year survival rate is 91%. Yes, recurrance is a major concern. Again, I'm not minimizig any of the pain, difficulty or risk of colon cancer. PD, by contrast, is chronic and progressive—it never goes away, and it gets worse over time. To be clear, there is no survival rate with PD because there are no treatments that even approach a cure.

Even if we could reasonably compare the two, what’s the point? Suffering isn’t a competition. Everyone’s experience is unique, and diminishing one illness to elevate another only serves to minimize the voices of those affected. The truth is, PD is bad enough. We don’t need to rank it against anything else to validate that reality.

3. Flat Stories Don’t Inspire Change

Great stories aren’t flat; they’re dynamic. They have peaks and valleys, triumphs and setbacks. Think of the most memorable tales you’ve heard—whether in books, movies, or real life. They’re filled with moments of overwhelming adversity and the incredible strength it takes to overcome them. These are the stories that captivate us, move us, and inspire action.

Now imagine a story where nothing much happens. The challenges are mild, the victories are easy, and the stakes are low. Would you watch that movie? Would you recommend it to a friend? Probably not. It’s the same with the stories we tell about PD.

When we say, “It’s not that bad,” we flatten the narrative. We make it seem like a few inconveniences, a bump here, a pothole there. Who cares? Why fund research or rally support for something that doesn’t seem like a big deal? To inspire change, we need to show the truth—the mountain peaks that seem impossible to climb and the valleys that feel impossible to escape. Those are the stories that matter.

4. Minimization Ignores the Complexity of PD

PD isn’t just a disease; it’s a collection of symptoms and challenges that vary widely from person to person. It’s not just about tremors—it’s about freezing episodes, difficulty swallowing, cognitive decline, Depression, isolation, apathy, and more. The treatment isn’t one-size-fits-all; it’s a constant negotiation of medications, therapies, and Lifestyle adjustments.

Minimizing the spectrum of PD ignores this complexity. It reduces a multifaceted, deeply personal experience to a simplistic narrative that doesn’t reflect reality. And it prevents meaningful conversations about how to manage the disease in ways that are tailored to each individual’s needs.

We need to stop framing PD as something manageable or minor. Instead, we need to embrace our whole stories and talk openly about all the challenges it brings. This honesty not only helps others understand what we’re facing but also fosters a sense of solidarity within the community.

5. The Whole Story is Powerful

Telling the whole story of PD—the good, the bad, and the ugly—isn’t about dwelling on the negative. It’s about painting a complete picture. It’s about showing the world what it really means to live with this disease, in all its complexity and humanity.

The whole story includes the victories: the new medication that helps for a while, the joy of reconnecting with a hobby, the support of a loving community. But it also includes the struggles: the days when nothing works, the fear of what’s to come, the moments of isolation and despair.

When we tell the whole story, we don’t just raise awareness—we inspire action. We move people to care, to donate, to advocate, to push for change. We remind them that Parkinson’s is a crisis worth fighting for.

A Call to Action: Reframe the Narrative

The next time someone asks how you’re doing, resist the urge to minimize. Instead, tell the truth—or as much of it as you feel comfortable sharing. Talk about the ups and downs, the moments of hope and the moments of struggle. Share your story in all its messiness and humanity. You may need to explore your own story – including the things you tell yourself. One way to do that is through our Cinema Therapy classes. We focus on great films that touch the human experience, like The Shawshank Redemption, Inside Out, Back to the Future, and Field of Dreams. We learn about what the Hero's Journey is and how we can apply it practically to our lives. Recent research has shown robust evidence that those who tell their life story as a Hero’s Journey feel their lives are more meaningful, leaving them feeling more connected, purposeful, and happy.

If you’re not ready to share your own story, amplify someone else’s. Support organizations that are working to change the narrative of PD. Advocate for research funding and better treatments because it matters and we're all worth it. And when you hear someone minimizing PD, gently challenge that narrative. Remind them—and yourself—that this disease is serious, that it deserves attention, and that the people living with it deserve better.

The Danger of Silence

Silence is another form of minimization. When we don’t share our stories, we allow others to fill in the blanks—and too often, they fill them with assumptions that don’t reflect reality. Silence allows the world to look away, to believe that Parkinson’s isn’t that bad, to prioritize other causes.

We can’t afford to be silent. The stakes are too high. PD is the fastest growing neurological disease in the world. By speaking up, by telling the whole story, we shine a light on the reality of Parkinson’s. We create connections, foster understanding, and inspire change.

Perhaps the hardest part of storytelling is walking the line between despair and hope.

We need to accept the awful, long-term reality of PD: it’s degenerative, and there’s no cure. And we also need to hold onto the moments of hope and connectedness in the present. We can also take solace in stories of overcoming the impossible – they happen all the time.

This duality is where storytelling shines. By showing both the darkness and the light, we create a narrative that feels truthful and compelling. We move our audience—not with pity, but with understanding, gratitude, and action. We remind ourselves that embracing the obstacles as teachers is the hero's journey.

Rewrite the Story of Parkinson’s

Parkinson’s is not “better” or “worse” than any other disease. It’s not a competition. It’s a unique, complex, and deeply challenging experience that deserves to be seen, understood and have research funded at a much higher level.

Let’s stop minimizing. Let’s stop comparing. Let’s start telling stories that matter—stories that reflect the full reality of Parkinson’s, with all its peaks and valleys. Stories that move people to care, to act, and to make a difference.

Because when we rewrite the story of Parkinson’s, we don’t just change the narrative. We change lives.

You can find out more about our storytelling programs offered through our 501(c)3 nonprofit, Yes, And…eXercise!

Originally Published on https://www.yesandexercise.org/

Robert Cochrane, PhD Yes, And...eXercise!

Dr. Robert Cochrane is a graduate of UNLV's Integrated Health Sciences department. He's researching the effect of improvisation and storytelling on Parkinson’s disease. He received grants from the Parkinson's Foundation and support from the Davis Phinney Foundation along the way. He is a popular, unique and high energy Keynote speaker, bringing joy, optimism and practical tools for people in the PD community to thrive today.

He has a background in filmmaking, with the Artisan Entertainment release, The Playaz Court, and two Stephen King-based short films among his credits. His father, Dan, was diagnosed with PD in 2001, which shifted Robert’s artistic lens to health. He made his first documentary, the award-winning Boys of Summer in 2004. There are two follow up films in the series with the fourth film coming in 2023.

He moved his family back to Walnut Creek, CA, where he grew up. He lives there with his beautiful wife, two teenagers who are, indeed, "all that" and is a proud care partner for his amazing parents.