It’s time for Parkinson’s research to move out of the slow lane

If you’ve ever had the pleasure of visiting your local Department of Motor Vehicles (DMV), you’ll understand the following metaphor. You walk in with the faint hope of progress. Maybe today will be different. Maybe the line will be short. Maybe the system will work. Maybe, finally, someone will call your number.

Now imagine living with Parkinson’s disease.

We patients are given a number, too — except ours starts with the date of diagnosis. And once you’re in the system, the waiting begins. Not just for symptoms to worsen or medications to help, but for real innovation. For change. For something new in the treatment landscape that doesn’t feel like a hand-me-down from the 1990s.

I was diagnosed five years ago. That’s five years of waiting in a neurological DMV, while the line in front of me barely moves.

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The gold standard, stuck in time

The last major advancement in Parkinson’s medication? Levodopa in 1967.

The last major advancement in Parkinson’s surgical therapy? Deep brain stimulation in 1987.

Both are considered “gold standards” — a phrase that implies excellence. But in tech, if your standard was created in 1967 or 1987, you’d be laughed out of the room. Imagine using a rotary phone to check your email.

And yet, for Parkinson’s, that’s where we are. Research and development cycles stretch decades. From idea to trial to approval, it could take 20 years, if you’re lucky. Meanwhile, patients and families are forced to make do, stuck with side-effect management and symptom-juggling while we fundraise for “awareness.”

Awareness is not enough. We’re already painfully aware.

Clinic-bound and cut off

Many therapies are clinic-bound, meaning they require an in-person visit to a center with specialized equipment. That’s like having to return to the DMV every week just to keep driving.

As patients, we have limited access, limited control, and minimal participation in shaping the therapies we use. Everything is done to us, not with us. We are not co-pilots in our own care — we’re passengers. Sometimes, we’re luggage.

My neurologist — an insightful and well-intentioned doctor — calls this “tedious and often stuck-in-the-mud academic medicine.” She’s not wrong. The system prides itself on being slow, deliberate, and skeptical. That’s fine for publishing a peer-reviewed paper. But when you’re trying to live with a progressive disease? The slow lane is a death sentence.

The DMV mentality

Let’s go back to that DMV analogy.

You sit and wait for your number to be called. You fill out forms you’ve already filled out. The rules keep changing. You forgot to bring the one piece of documentation they now require. No, they can’t help you today. Try again next month.

It’s not the fault of the people behind the desk. They’re following procedures. They’re doing their best within a flawed system.

Same with many researchers, doctors, and foundations. They care. But the process itself — the ecosystem we’ve built — is adversarial to speed. It prioritizes control over curiosity. Caution over creativity. Safety over urgency. I understand the reasons, but I also understand the consequences.

Because when you’re living with Parkinson’s, the waiting is not harmless.

Accelerating the feedback loop

So what’s the alternative? How do we stop waiting for our number to be called and start building a better system?

We need to accelerate the feedback loop between patient experience and therapeutic innovation.

That means:

• Creating platforms for real-time, real-world data collection, not just clinic snapshots.
• Supporting general wellness products that don’t require U.S. Food and Drug Administration bottlenecks just to get started.
• Opening the door to multisensory, at-home therapies — not just more pills.
• Partnering with engineers, technologists, and designers — not just pharmaceutical giants.
• Funding experiments, not just endpoints.

We need to treat Parkinson’s research and development like a startup, not a government agency. Fast iterations. Continuous testing. Human-centered design.

The DMV doesn’t work because it assumes one size fits all. Parkinson’s care doesn’t work because it assumes one path fits all. But no two patients are the same. No two nervous systems respond identically.

The brain is dynamic. So must be the system that treats it.

Final thoughts from the waiting room

So here I am, five years in. Waiting. Watching. Still hopeful.

But increasingly, I’m not just waiting — I’m building. Like others in the patient community, I’m working with engineers and advocates to push forward new ideas: wearable devices, visual-audio-haptic interfaces, multisensory patterning, direct-to-patient systems, faster loops.

It’s not easy. But it’s necessary.

Because people with Parkinson’s are not static. We are not research subjects. We are dynamic, creative, capable human beings. And we are tired of waiting for our number to be called.

Let’s modernize the system. Let’s get out of line. Let’s create the future — before the next 20-year cycle begins.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.