The Unseen Struggle: Advocating for Someone with Atypical Parkinsonism

Living with atypical Parkinsonism is a complex and often misunderstood journey—not just for the person experiencing it, but for those who love and care for them. Unlike classic Parkinson’s disease, atypical Parkinsonism encompasses a group of conditions that mimic some of Parkinson’s motor symptoms—like tremors, stiffness, and balance issues—but come with additional challenges that can be less predictable and harder to manage. One of the most heartbreaking aspects of this condition is that, for many, mental clarity remains intact most of the time, yet subtle "misfires" in the brain can lead to moments of vulnerability, confusion, or irrationality. This duality creates a unique need: someone to oversee, advocate, and protect them, even as they fiercely hold onto their independence.

A Mind That Knows, But a Brain That Betrays

Imagine being fully aware of your surroundings, your life, and your identity, yet unable to trust your own brain at times. For someone with atypical Parkinsonism, this is often the reality. They might be sharp and engaged one moment, only to stumble into a mental fog the next—making decisions that don’t align with their usual judgment or falling prey to scams they’d typically see through. These cognitive hiccups can be sporadic, making them all the more insidious. They might forget to take their medications, mismanage their finances, or struggle with daily tasks like preparing meals, all while insisting they’re fine.

Worse still, they may offer excuses for these lapses—a fall wasn’t due to balance issues, but because the floor was uneven; a missed dose wasn’t forgetfulness, but a deliberate choice. This isn’t denial in the traditional sense; it’s a desperate attempt to maintain control over a body and mind that are slipping out of sync. They know something is wrong, and that awareness is both a gift and a curse. It keeps them tethered to reality, but it also amplifies their frustration and helplessness as they watch themselves falter.

The Loss of a Filter and the Weight of Words

Another challenge is the erosion of their social filter. Atypical Parkinsonism can strip away the subtle mechanisms that temper our thoughts before they become words. Blunt, unvarnished statements might spill out—comments that sting or shock—but they’re not meant to wound. They’re the raw output of a brain that can’t always pause to polish its edges. Loved ones might feel hurt or embarrassed, but for the person with the condition, it’s yet another reminder of what they’re losing. They see the impact of their words, regret them, and yet can’t rewind the moment.

Why an Overseer and Advocate Is Essential

This is where the need for a dedicated overseer and advocate becomes undeniable. Someone with atypical Parkinsonism might have the capacity to make decisions most of the time, but those unpredictable misfires leave them exposed. They need a trusted person—a spouse, a child, a friend, or a professional—who can step in with compassion and firmness to:

• Monitor and Manage Care: Ensuring medications are taken on schedule, appointments are kept, and daily routines are maintained, even when resistance or excuses arise.
• Protect Against Exploitation: Watching for signs of financial scams or manipulative influences that prey on fleeting moments of confusion.
• Interpret and Mediate: Understanding when a harsh word or irrational choice isn’t intentional, and helping others see the condition, not the person, at work.
• Push for Proper Support: Navigating a healthcare system that might not fully grasp the nuances of atypical Parkinsonism, advocating for therapies, adjustments, or resources tailored to their needs.

This role isn’t about stripping away autonomy—it’s about safeguarding it. It’s about standing beside someone who knows they’re slipping but can’t always catch themselves, offering a steady hand without judgment.

The Emotional Toll and the Power of Support

For the person with atypical Parkinsonism, the hardest part might be the self-awareness. They see the falls, the forgotten pills, the blurted words, and they feel the weight of it all. They might push back against help, not out of stubbornness, but out of a longing to reclaim what’s being taken from them. That’s why their advocate must be more than a caretaker—they must be a partner in this fight, someone who listens to their fears, validates their frustrations, and fights for their dignity.

And for the advocate, it’s no small task. It requires patience, resilience, and a willingness to see beyond the surface—to recognize that a fall isn’t just clumsiness, a missed dose isn’t laziness, and a sharp comment isn’t malice. It’s a labor of love, rooted in the understanding that this person, despite their struggles, is still there, still themselves, still deserving of respect and agency.

A Call for Compassion and Action

If you know someone with atypical Parkinsonism—or any condition that leaves them vulnerable yet aware—consider what they might not say aloud: “I need help, but I don’t know how to ask for it.” Be that voice for them. Step into the role of overseer and advocate, not to control, but to empower. Help them navigate a world that doesn’t always accommodate the unpredictable, and remind them they’re not alone on this journey.

Because in the end, it’s not just about managing symptoms—it’s about preserving a life, a mind, and a spirit that still shine through the cracks. They deserve that fight. And they shouldn’t have to fight it alone.

By Laura Louizos

xx Hugs