The Invisible Work of Living with Parkinson’s
When most people hear the word Parkinson’s, they picture a tremor.
They imagine a shaking hand. A slower walk. Maybe a softer voice.
What they don’t see is the work.
Living with Parkinson’s is not just about managing symptoms. It is about managing systems — inside your body, inside your mind, and inside your day. It is a constant adjustment. Constant awareness. Constant recalibration.
And most of it is invisible.
Medication timing is not casual. It is strategic. Doses are spaced carefully because “on” time and “off” time matter. Being even 30 minutes late can change how your body responds. Meals may need to be timed around protein absorption. A meeting, a class, a dinner — all of it gets planned around when medication will be most effective.
It is not dramatic. It is disciplined.
Fatigue is not simply being tired. It is neurological exhaustion. Parkinson’s affects dopamine pathways, and dopamine influences movement, motivation, and energy regulation. Research published in journals such as Movement Disorders consistently identifies fatigue as one of the most common and disabling non-motor symptoms of Parkinson’s disease — yet it is often underrecognized.
Some days require more pacing than pushing.
Then there is cognitive load. Slowed processing speed. Word retrieval challenges. The extra seconds it takes to organize thoughts. The mental effort required to stay focused in a noisy room. None of this is obvious from the outside. But internally, the brain is working overtime.
Add to that emotional regulation. Dopamine plays a role in mood. Anxiety can increase. Frustration can spike. Tearfulness can come unexpectedly. And yet, many people living with Parkinson’s become experts at masking — at smiling through the moment, at keeping pace socially, at not wanting to make others uncomfortable.
It is a quiet resilience.
Dr. Bessel van der Kolk reminds us that “the body keeps the score.” Chronic illness makes that reality tangible. The nervous system is always responding. Always adapting. The invisible work of Parkinson’s is often nervous system management — calming the body, regulating stress, preserving energy.
This is why belonging matters.
This is why movement matters.
This is why community matters.
At The Oxx Foundation, we talk often about strength. But strength is not pretending symptoms don’t exist. Strength is learning how to live fully while managing what others cannot see.
It is planning your day carefully.
It is resting without guilt.
It is asking for support.
It is showing up anyway.
And for caregivers, the invisible work exists too — watching medication schedules, noticing subtle shifts, holding emotional space, absorbing stress.
Parkinson’s is not just a movement disorder. It is a whole-person experience.
The more we understand the invisible work, the more compassion we build — in our families, our workplaces, and across our community here in Ocean County.
If you are living with Parkinson’s, know this: the effort you expend every day is real. It counts. Even if no one else sees it.
And if you love someone navigating this disease, the most powerful gift you can offer is patience and understanding.
You do not have to carry the invisible alone.
This month, we invite you to join us — whether through movement, conversation, or celebration. Our Parkinson’s support programs in Ocean County are designed to reduce isolation and build belonging. Our POUND® classes continue to create space for strength and connection through movement. You can learn more about upcoming classes and community offerings on our website at www.theoxxfoundation.org
And on April 19, we will gather for A Night at the Oscars: Stronger Together for Parkinson’s, our largest annual gift auction, where every ticket purchased helps fund programming that supports individuals and families living with Parkinson’s right here in our community.
When you participate, you are not just attending an event. You are helping make the invisible work lighter for someone else.
That is what stronger together truly means.
