Most people living with Parkinson's disease have heard of tremor. They know about stiffness, slowness, the gradual changes in how the body moves. But there is another movement symptom that affects a significant portion of the Parkinson's community — one that is widely misunderstood, often mistaken for Parkinson's itself, and rarely talked about until it becomes impossible to ignore.
It is called dyskinesia. And according to current research, 78% of people with Parkinson's disease do not fully understand what it is.
Dyskinesia is not Parkinson's tremor. It is a side effect of the medication used to treat Parkinson's. Understanding the difference changes everything.
What Is Dyskinesia?
Dyskinesia refers to erratic, involuntary movements that are a known side effect of levodopa — the most commonly prescribed Parkinson's medication. These movements can look like fidgeting, writhing, swaying, or jerking. They can affect a single limb, or they can involve the entire body.
Approximately 90% of people living with Parkinson's will experience dyskinesia after ten years of taking levodopa. It does not happen to everyone right away, and its severity varies widely from person to person. For some it is a minor inconvenience. For others it is painful, exhausting, and profoundly disruptive to daily life.
The confusion with Parkinson's tremor is understandable — both involve involuntary movement. But the cause is different, and so is the treatment path. Parkinson's tremor stems from the disease itself. Dyskinesia stems from the medication used to manage it. That distinction matters when it comes to talking with your doctor.
How It Affects Daily Life
Dyskinesia does not stay in the doctor's office. It follows people into grocery stores, restaurants, family dinners, and workplaces. The movements are unpredictable. They can come on suddenly, peak for a period, and then ease — often in rhythm with medication cycles.
The physical toll is real. The erratic movements are tiring. Holding a cup, signing a document, eating a meal — ordinary tasks become difficult when the body will not cooperate. But there is also an emotional dimension that does not always get discussed.
The unwanted attention is one of the hardest parts. When your body moves without your permission in a public space, other people notice. That changes how you move through the world.
Sean, a lawyer and former triathlete who lives with Parkinson's, describes dyskinesia as unlike anything he had ever experienced — and he had trained his body through years of competition.
Kimberly describes the stares she receives in public as one of the most difficult parts of living with the condition. Her story puts words to something many people experience but rarely say out loud.
Why This Matters for the Parkinson's Community in Tacoma
The Parkinson's community here in Tacoma — through Wally Croshaw's support group, through the work of APDA Northwest, through the Issho Open Taiko drumming program — is one of the most connected and resourced communities of its kind in the region. And yet dyskinesia remains under-discussed even within that community.
Part of the reason is timing. Dyskinesia often emerges years into a Parkinson's diagnosis, after people have already built their understanding of the disease around tremor, rigidity, and slowness. When dyskinesia appears, it can feel like a new problem — one that nobody warned them about.
The other reason is that it can be addressed. That is the conversation worth having.
The Conversation to Have With Your Doctor
If you or someone you love is experiencing movements that seem separate from the usual Parkinson's tremor — movements that come and go, that feel different, that peak at certain times of day — dyskinesia is worth bringing up at the next appointment.
There are treatment options. Adjustments to levodopa dosing, timing, and formulation can help. There are also dedicated treatment approaches specifically for dyskinesia. The first step is naming it.
- Track when the movements happen — time of day, relation to medication doses
- Note which parts of the body are affected and how long episodes last
- Use the words: "I want to talk about dyskinesia as a possible side effect"
- Ask specifically: "Is what I am experiencing dyskinesia or Parkinson's tremor?"
A Resource Worth Bookmarking
The BE ICONIC with PD program has built one of the clearest patient-facing resources on dyskinesia available online. It includes video stories from real patients, clinical information translated into plain language, and guidance on how to start the conversation with your neurologist or movement disorder specialist.
It is not a substitute for medical advice. But it is the kind of resource that helps a person walk into a doctor's appointment better prepared — and that preparation matters.
The Grey Revolution Health Thread
The Grey Revolution covers Parkinson's, movement medicine, and over-60 health through original reporting and community connection. The Brain Signals series — produced with Warren Peters MD — goes deeper into the neuroscience. The Movement Medicine series covers exercise, drumming, and physical practice as part of Parkinson's care.
If you have a story, a question, or a resource worth sharing — pull the thread.
