There is an impressive little magic trick that happens around Parkinson’s. I can enter a room as a fully grown adult and, within minutes, disappear while still sitting in the chair.
Nobody throws a blanket over me. Nobody releases a cloud of smoke. Someone simply looks at my face, hears a pause in my speech or watches my body move differently, then turns to the person beside me and asks, ‘How has he been doing?’ Apparently, neurological symptoms now come with complimentary invisibility.
What people see is a masked expression, a softer voice, a delayed response, an involuntary movement or a body that does not perform confidence on command. What they often assume is that the person inside that body must also be less present, less informed or less capable of participating in the conversation.
Those are not the same thing.
My face may fail to provide the reassuring customer-service smile people expect. My words may occasionally take the scenic route. I may need another second to organize an answer while everyone else in the room develops the emotional stamina of a toddler waiting for a microwave.
That does not mean I have no answer. It means the answer is arriving through a nervous system that no longer offers express shipping.
Parkinson’s creates a brutal mismatch between what is happening inside a person and what the outside world can read. The person may be listening carefully while appearing detached. They may understand the question while struggling to launch the words. They may have a strong opinion trapped behind a face that refuses to advertise it.
The cost of that misunderstanding is not merely awkwardness. When people begin speaking around you, they begin making decisions around you. Your preferences become optional, your history gets summarized by someone else and your own account of your body is treated like a late exhibit the court may admit if time permits.
Care partners and family members can be essential. They notice changes, remember details and carry information when symptoms, stress or exhaustion make communication harder. Their voice can support mine without replacing it.
The order matters. Ask me first. Give me time. Confirm what I mean instead of guessing. Then invite help if I want it or if there is a genuine reason I cannot answer. That is not complicated medical innovation. It is basic respect with a slightly longer attention span.
After thirty-five years with Parkinson’s, I understand why people become uncertain. The disease scrambles many of the signals human beings use to judge attention, emotion and competence. But uncertainty is a reason to communicate more carefully, not permission to demote the patient from participant to topic.
This happens far beyond medical offices. Restaurants, stores, family conversations and public spaces all have their own version of it. Someone notices disability, finds the nearest apparently nondisabled person and appoints them temporary spokesperson for a life they may not even understand.
The solution is not treating every person as though disability has no effect. Sometimes assistance is necessary, and pretending otherwise can be its own form of neglect. The solution is refusing to confuse support with erasure.
TODAY’S DEFIANT TRUTH:
If I am in the room, stop talking about me like I’m not.
A slower answer is still an answer. A difficult voice is still a voice. Look at me, ask me and allow enough silence for me to remain the authority on my own damn life.
Do not mistake delayed communication for an empty chair.
Live Defiantly. — Richie Pikunis