I’ve lived with Essential tremor (ET) for as long as I can remember. Diagnosed at just three years old, I’ve never known a life without the shake—without the challenge. What began as a subtle tremor in my hands has gradually extended its grip across nearly every part of my body.

 

Today, the tremor is visible in my legs when I stand still or walk, and present in my hands and arms any time I move. My voice shakes when I speak, often making me self-conscious in conversation. There's a slight but constant movement in my head, even when I’m perfectly still. At night, when I try to rest, the internal tremor doesn’t stop. I feel it deep inside, buzzing and humming, even in my ears when I lay down on my side. Occasionally, I even feel it in my tongue.

 

Walking is difficult. The act of simply moving from point A to B requires focus, coordination, and a good deal of courage. I now use a cane to help maintain balance and ease the strain on my legs. Even with support, every step feels unpredictable.

 

Then there are the migraines—relentless and exhausting—adding yet another layer to this already complex condition.

 

Essential tremor is often misunderstood, underestimated, or overlooked entirely. Most people see the shake, maybe hear it in my voice—but they don’t feel what I feel. The exhaustion. The embarrassment. The frustration of failing at the simplest tasks—typing, eating, pouring a glass of water, or even trying to rest.

 

Some people confuse ET with Parkinson’s, or think it’s "just nerves." But ET doesn’t go away when I’m calm. It doesn’t lessen when I’m at peace. It’s not temporary. It’s constant, chronic, and life-altering.

 

I live in northern Michigan, on a beautiful but isolated place called Mackinac Island. While it’s known for its charm and history, it comes with significant challenges—especially when it comes to medical care.

 

The island is only accessible by ferry, which operates based on strict seasonal schedules and weather conditions. In the winter, if the lakes freeze over and no boats can run, the only way off the island is by small six-seater planes—and those flights depend entirely on clear weather and visibility.

 

This means that even routine medical appointments become logistical puzzles. The closest movement disorder specialist is two and a half hours away after getting off the island. That’s assuming there’s a boat or a flight available, no cancellations, and cooperative weather. It’s physically and mentally draining—and sometimes, not even possible.

 

Getting help shouldn't be this hard, but this is the reality of life in a remote location with a complex neurological condition.

 

As hard as the physical symptoms are, navigating the healthcare system has often felt even harder. In 2023, I lost the neurologist who took me more than a year to find—a specialist who finally understood my condition.

 

I was then transferred to another neurologist who had taken over their patients. I only saw this new doctor once before losing them too in early 2024.

 

Determined to keep going, I sought out a new movement disorder specialist and was told my primary care provider (PCP) had submitted a referral. But then, in January of this year, I lost my PCP as well. I never heard back about the referral, and to this day, I remain without a neurologist and without a PCP—just trying to manage this condition the best I can on my own.

Despite the obstacles, I’ve worked hard to build a career I’m proud of. I'm a Director of Total Rewards in HR, responsible for systems, claims, compliance, onboarding, and more. It’s a job that demands clarity, follow-through, and consistency—three things that ET tries to disrupt daily.

 

I’ve adapted in ways many people don’t see: voice-to-text tools, strategic rest, managing screen time around tremor flare-ups, and developing a deep well of patience with myself. It’s not perfect. But I’ve never stopped showing up.

 

Managing ET isn’t just about enduring the tremor—it’s about navigating a medical landscape with few helpful options. I can’t take medications like propranolol or primidone—they slow my heart too much, triggering dangerous side effects. I currently take gabapentin, which helps somewhat, but not enough to stop the tremor or the impact it has on daily life.

 

Still, I try. Every day.

 

Essential tremor has taken many things from me—ease, comfort, simplicity—but it has also given me clarity and a deep appreciation for persistence.

 

I may shake, but I am resolute.

I may stumble, but I am strong-willed.

I may tremble, but I am unshaken in my pursuit of a full, meaningful life.

 

This is my journey. And I’m still walking it—with my cane, with courage, and with the quiet conviction that I’m more than my tremor

 

Essential tremor affects millions, yet it remains underrecognized, underfunded, and misunderstood. Many of us live in silence—not because our tremors aren’t visible, but because the impact on our lives is invisible to others.

 

We’re more than our shaky hands. We are people navigating careers, relationships, and daily life—while fighting a condition that never rests.

 

What we need is awareness.

What we deserve is access to care, especially in remote or underserved regions.

What we hope for is compassion and understanding, not pity.

 

If you know someone with ET, be patient. And if you’re living with it yourself—know that your struggle is real, and your strength matters.

 

We may shake—but we are unshaken in spirit.