Each person decides when to share, who to tell, and how much to say
Written by Crystal Onyema | April 1, 2026
One of the initial things I didn’t understand when I became a Parkinson’s caregiver was that not everyone is ready to share their diagnosis right away. From the outside, it can feel like something that should just be said so that people understand what’s going on. But for my late uncle Brandon, it wasn’t that simple. What he was dealing with was real, but how and when he chose to share it was his own decision.
I saw this most clearly when he was with his friends, people who had known him for decades. They understood his sense of humor and how easily he could keep a conversation going. That was just him. So when he started speaking more slowly or took longer to answer, it didn’t seem like anything was different at first.
One of his closest friends laughed about it once, thinking he was just joking like usual and trying to make the moment last. I could see why they thought that. They were responding to the person they had always known. But they didn’t know he was living with Parkinson’s disease. He wasn’t ready to share that yet, and in that moment, I felt like I was carrying a quiet truth that no one else was in on.
Everyone has their own timing
Even early on, I could see that he knew things were changing. He still acted like himself, kept things light, and used humor to try to stay in a conversation. But there were small pauses that felt different. Sometimes I noticed him working harder to find his words or to keep up, even if no one else saw it. It wasn’t denial or avoidance. It was about timing and attempting to maintain control in a situation where so much felt uncertain.
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