06/01/2026
I think this is important to read - if you love someone with PD or in you are someone with PD. It’s not always easy to explain or understand …
“Time To Start a Conversation
I know this page is usually about encouragement, hope, and finding the positives while living with Parkinson's. I also know some people may not want to read something this heavy, and that's okay. Feel free to keep scrolling.
My wife and I recently sold our house. We were at our storage locker sorting through everything that had been removed from our house before it was sold. We have two adult children in their 20s.
I explained to my oldest that I was only going to be there for a couple of hours. I had enough energy to organize and move my own belongings, but not enough to take care of the belongings of their sibling who didn't show up.
Their response was that I was "playing the victim card" because of my Parkinson's. They told me to stop using Parkinson's as an excuse.
What hurts the most is that one of the things I advocate for so strongly is helping people understand that Parkinson's is so much more than tremors and rigidity. Those are only the visible tip of the iceberg. In fact, I don't even have tremors.
You would think that after watching me live with depression, apathy, cognitive challenges, and overwhelming fatigue, my own child would understand that energy is not an unlimited resource for me.
I wasn't asking for sympathy. I wasn't looking for special treatment. I was simply being honest about what I was capable of doing that day.
I know many of you have probably experienced something similar. Not from strangers, but from the people closest to you. The people who see you every day and still don't fully understand what Parkinson's takes from you.
Right now, I'm struggling with the hurt of that comment and trying to figure out how to move forward. If you've been through something similar, I'd appreciate hearing how you handled it.
Sometimes the hardest part of Parkinson's isn't the disease itself. It's feeling unseen by the people you love.
As I've sat with this for a few days, I've started to wonder if part of the reason this hurt so much is because it touched a nerve I wasn't expecting.
My mother lived with Lewy body dementia. Looking back, I realize I often lost patience with her. The truth is, I had no real understanding of the mental and emotional struggles she was facing because she rarely talked about them. I saw what was happening on the outside, but I didn't understand what was happening on the inside.
Now, living with Parkinson's, I sometimes find myself on the other side of that experience.
When my child told me I was playing the victim card, it hurt. But it also made me wonder if this is how misunderstandings happen. We see what is visible and assume we understand the whole story.
One of the reasons I'm so passionate about Parkinson's advocacy is because I don't want people living with this disease to suffer in silence. My belief has always been simple: if we don't understand what we're going through, how can we explain it to others? And if we don't explain it, how can we expect them to understand?
It's time for us to talk openly and honestly—not only with each other, but with the people who love us. Parkinson's affects every part of life, not just movement. For many of us, the invisible symptoms affect us as much as, or more than, the visible ones.
Maybe part of my hurt is realizing that my son doesn't fully understand what I'm going through.
Maybe part of my hurt is realizing that years ago, I didn't fully understand what my mother was going through either.
Neither realization feels good.
But perhaps both remind me why these conversations matter so much. “
