What Parkinson’s Feels Like
Based on descriptions written by people with Parkinson’s in Canada, Germany, Ireland, Netherlands, Slovenia, Spain, UK and USA; a note from illustrator, Barbara Salsberg Mathews; and a message from Larry Gifford, President & Cofounder, PD Avengers.
The descriptions demand that we recognise Parkinson’s as a disability that reshapes identity, autonomy, and participation in society — not merely a set of visible tremors to be checked off a clinical list.
Through vivid imagery, some of it unsettling, people describe Parkinson’s as …
a “never‑ending roller coaster,” a “grey mist,” a “slow, insidious thief,” a “wet quilt,” and an “unwelcome guest” that moves in without consent and refuses to leave.
Everyday actions — putting on socks, getting dressed, writing, speaking, or simply walking — are transformed into Olympic events, wet cement, or an exhausting battle against invisible strings — as if one’s body were a puppet controlled by an unseen master.
Others liken themselves to clockwork toys that wind down as medication wears off, or to lab rats subject to constant experimentation and adjustment, highlighting the power imbalance people experience within medical systems and social structures alike.
Beyond the physical symptoms, the narratives insist on the emotional, social, and psychological dimensions of this disability.
People describe storms raging inside while their faces remain masked and unreadable, leaving their pain and effort unrecognised by those around them.
Parkinson’s becomes an ocean where you float alone, never sure when the next wave will crash over you, and yet you are expected to stay calm, resilient, and grateful for whatever limited support is offered.
This disconnect between inner reality and outward perception is a clear disability rights issue: when struggle is invisible, accommodation, empathy, and policy often fail to appear.
The artwork in this collection does more than illustrate symptoms; it restores agency to people whose bodies and stories are frequently controlled by others.
By translating lived experience into visual language — puppets, armour, Dali-like landscapes, tangled knots — the illustrator collaborates with the Parkinson’s community to reclaim narrative power from clinical charts and reductive stereotypes.
This act of co‑creation is itself a form of resistance: it insists that disabled people are not passive subjects of care, but authors, artists, advocates, and decision‑makers in their own lives.
Framed through the lens of disability rights, this work calls for more than sympathy; it calls for structural change. It urges clinicians to look beyond checklists and truly listen, to understand how fatigue, rigidity, dyskinesia, and emotional volatility intersect with work, family, and identity. It asks policymakers to recognise Parkinson’s as a complex, fluctuating disability that demands flexible supports, inclusive environments, and equitable access to treatment and community life. It pushes society to move from “What is wrong with you?” to “What barriers are we creating, and how do we remove them?”
At its core, this project is an invitation: to see people with Parkinson’s as whole human beings, not as broken bodies or tragic stories. It honours the exhaustion, grief, and fear, but also the humour, creativity, and determination that persist despite a condition that can feel like walking through wet cement or living in slow motion.
In amplifying these voices and images, the collection becomes an act of collective advocacy— a reminder that disability rights are human rights, and that the fight for accessibility, dignity, and respect must centre the lived experiences of those most affected.
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