Parkinson's - Finding Someone to Blame

Because that's what we do

As I say in the About section of From Where I Sit: “Sometimes what I share will be reflective. Sometimes it might be raw. But it will always be real.” Consider this one in the “raw” category. My goal isn’t to offend, but to be honest about what I see, from where I sit.

In Search of They

After every major natural disaster, like the recent floods in Texas and the Carolinas, or the devastation left in Katrina’s wake, the earliest press conferences follow a predictable script. Even before the water has fully receded or rescue efforts are complete, the questions begin: Who is to blame? Who should have known? What could have been done to stop this?

The human instinct to search for blame kicks in before the full extent of the damage is even understood. We want someone to point to — a government agency, a politician, a flawed system — anything that might help us make sense of suffering dealt by forces beyond our control.

That same instinct kicks in when we, or someone we love, is diagnosed with Parkinson’s, or any serious medical condition. We want to know why. We want to know who or what is responsible. I call it searching for they. They didn’t do their job. They failed to respond. They didn’t get the forecast right. You know the drill.

Blameless Society

I participate in several Parkinson’s disease social media groups and online forums, most of which are restricted to patients and their caregivers. These forums are valuable resources, offering a place where patients and caregivers can ask questions, share experiences, and post information that might help others in the community.

Within these groups, a common topic of conversation revolves around Parkinson’s causes and who is responsible for them. Blame often falls on a familiar cast: doctors who missed early signs, pharmaceutical companies that profit from treatments but offer no cure, chemical manufacturers whose products are linked to increased risk, and government agencies or the military for failing to protect people from known hazards. Some point to slow-moving bureaucracies, underfunded research, or questionable priorities in public health policy.

And it’s not just civilians. Veterans know this story all too well. From the contaminated water at Camp Lejeune, to widespread use of Agent Orange in Vietnam, to burn pit exposure in Iraq, Afghanistan, and earlier conflicts — these weren’t imagined risks. They were real, and often acknowledged far too late.

I receive VA benefits myself for burn pit exposure during the Desert Storm era. And I’m not alone. The PACT Act now offers expanded benefits for veterans with service-related toxic exposures — a long-overdue recognition that some of the damage we carry came not from personal choices but from doing our jobs in environments we didn’t control.

Still, even that recognition has its limits. Some say it doesn’t go far enough, or moves too slowly. And most civilians — factory workers, farmers, utility crews, or anyone simply living near contaminated sites — receive no compensation at all. They’re left with the same disease, the same questions, and far fewer answers. That disparity matters. And it deserves the same urgency and accountability we’re just beginning to offer veterans.

Rarely, though, do we turn the lens inward. In the aftermath of the storms I opened with, there have been few, if any, saying they should have paid more attention to the weather forecast, or should have thought about what they would do if the campground, down by a river, flooded. Similarly, few of us with Parkinson’s admit to using pesticides without gloves and/or ignoring safety instructions, or buying homes adjacent to farms where chemicals have been sprayed for generations.

It’s easier, and more comforting, to hold someone else accountable. Turn on the TV and you’ll see ads for lawsuits against manufacturers of chemicals like Roundup and Paraquat. And sometimes, that blame is well deserved. But if we stop there, we risk missing the full picture. The uncomfortable truth is that while many of these institutions failed us — or exposed us — we may have made choices, unknowingly, that compounded the risk. None of that excuses corporate negligence or systemic blind spots. But it does make the case for deeper understanding — and shared responsibility.

Sometimes the exposure started long before the diagnosis.

The Things We Do to Ourselves

Sometimes the truth is harder to face because it’s not only them. It’s us, too. Not in the sense of fault, but in the way risk accumulates — through both external exposure and internal wear and tear. We tend to think of Parkinson’s as something that just happened to us. But the reality is more complex.

Research shows that long-term alcohol use doesn’t just harm the liver and pancreas. It also suppresses immune function and increases inflammation, weakening the body’s ability to defend itself. It acts as a neurotoxin that disrupts brain function and may leave the nervous system more vulnerable to damage. The National Institute on Alcohol Abuse and Alcoholism outlines how chronic drinking impacts nearly every major body system, including those critical to filtering toxins and protecting brain health.

But it doesn’t stop there. Smoking, poor diet, lack of regular exercise, and chronic stress can all take a toll over time. Add in poor sleep, unchecked blood pressure, or ignoring early symptoms because “we were too busy” or “didn’t want to know,” and you begin to see a pattern. These aren’t character flaws. They’re just human tendencies. But they matter. Every little thing we do to our bodies, every shortcut we take, can add up. And sometimes, the result is that when something bad does come along, we’re less equipped to fight it off.

It’s like the start of a dark twist on an old joke: two guys are exposed to the same toxic chemicals — one develops Parkinson’s, the other doesn’t. Why? Maybe one experienced more exposure than the other. Maybe one had a genetic vulnerability, the other didn’t. Or maybe one lived in a way that better supported the body’s ability to fight off damage. It’s hard to tell. But that uncertainty is precisely why we need to examine all the factors — industrial, genetic, behavioral — not to assign blame, but to uncover answers.

I’m not suggesting that we each caused our Parkinson’s. I am suggesting that understanding why it happens in some and not others requires looking at everything — what’s in our environment, what’s in our genes, and yes, what’s in our habits.

Spraying for mosquitoes wasn’t forced on us—it was a service we valued. But protection in one area may have come with a cost in another. Many municipalities still provide this service.

No Secrets in the Exam Room

If we’re going to be honest about the choices we’ve made in the past, we also have to be honest with the people trying to help us now. That means giving our doctors a full picture — not just our symptoms, but our history. Past habits matter. Alcohol use, smoking, drug use (even if it was decades ago), over-the-counter supplements, exposure to chemicals — all of it can affect how our bodies respond to treatment today. If we leave that out, intentionally or not, we risk being prescribed medications or doses that don’t work — or worse, that do harm. And we can’t turn around and blame the doctor if they’re working with an incomplete story.

That goes for what we’re doing right now, too. Are you self-medicating and not saying anything? Even if it’s legal, even if it feels harmless, your care team needs to know. I live in a state where medical marijuana is available, and I wondered if it might help me overcome insomnia, a typical Parkinson’s symptom. I’m the squarest guy you’ll ever meet — thanks to a career where I was subject to regular and random drug testing, I never experimented with pot. So, I asked my doctor.

She can’t prescribe it, but she took the time to explain how it might help, what the downsides could be, and how it might interact with my current meds. That conversation mattered. It enabled me to make an informed decision, and ensures the doctor has an accurate record of what I am taking - both prescription and nonprescription.

Doctors depend on a complete and accurate medical history — especially when prescribing medications for complex conditions like Parkinson’s. Without it, even the most well-intentioned care team may be working in the dark. In fact, when pharmacists take detailed drug histories at admission, medication errors drop by half and adverse drug events fall significantly (PMC).

Managing Parkinson’s isn’t just about what they do for us. It’s also about what we’re willing to share, admit, and take responsibility for.

Owning Our Piece

Parkinson’s is, in many ways, unfair. Most of us didn’t see it coming, and we didn’t sign up for it. But now that it’s here, the question becomes: what do we do with it? Casting blame isn’t always wrong. When there’s real culpability, it’s appropriate to hold people and systems accountable.

But in many cases, they didn’t know. Long-term effects of exposure were underestimated, overlooked, or not fully understood. Most chemicals and treatments were tested, but not everything was caught. The most important thing now is understanding the causes — so that better treatments, protections, and maybe even a cure can follow.

That process requires honesty on all sides. Industry, government, and medicine must acknowledge their roles — sometimes passive, sometimes willful — in shaping environments where preventable harm occurred. But we also have a role to play. It's not about shouldering all the blame, but about helping researchers and clinicians understand the whole story. Because if we want answers that lead to action, we all have to own our piece of it.

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Recommended Voices

I’m not the only one writing or speaking honestly about Parkinson’s. If this post, or any of my previous ramblings, resonated with you, you might also appreciate the insights, humor, and honesty shared by others in the Parkinson’s community. Here are a couple of voices worth checking out:

• Phil Bernstein – Shakin’ Street
  Phil launched Shakin’ Street in May 2024 when he retired, a year after his Parkinson’s diagnosis. Every couple of weeks, he tackles whatever’s on his mind — from tools that make life easier for people with Parkinson’s, to aging in place, to the ethics of using the term “Parkie.” It’s smart, personal, and full of perspective. Shakin’ Street can be found here.

• Tim Lockard – My PD Party
  Tim has built a growing online community for people with Parkinson’s through his My PD Party platform. He posts frequently on Instagram (@mypdparty), hosts the My PD Peeps Podcast on YouTube, and is a passionate advocate and fundraiser for the Michael J. Fox Foundation. You can support his efforts here. If you’re looking for connection, energy, and community — he’s a great place to start.