What I Wish People Understood About Lewy

Living with Lewy Body Dementia is like walking through fog. Some days, I can see clearly. Other days, I can’t even find the path. This post is for anyone who’s ever wondered what it’s really like — beyond the diagnosis.

I live with Lewy Body Dementia every day. It’s confusing, exhausting, and sometimes even funny in unexpected ways. But more than anything, it’s misunderstood. Most people mean well — they really do. But there’s often a disconnect between what they see and what I’m actually going through.

Many of my symptoms are invisible. You might not see the cognitive fog, the hallucinations, or the mental fatigue just by looking at me. And yet, they’re some of the hardest parts to live with. Sure, there are physical symptoms too. I have tremors in both hands now, and sometimes in my leg. Because the signals from my brain aren’t making it all the way to my left side, my leg doesn’t cooperate. I’ve lost the ability to walk and now rely on a wheelchair full-time. My balance is also severely affected. Whether this is permanent or temporary only Lewy knows for sure. But what people often miss is how these symptoms — especially the cognitive ones — come and go. I might be clear and articulate one moment, and foggy or lost the next. There’s no warning, no rhythm, no reason. It’s like flipping a switch… only I’m not the one in control. “Just because I can carry a conversation now doesn’t mean I’ll remember it tomorrow.”

Lewy isn’t Alzheimer’s. There’s overlap, sure — both are forms of dementia — but Lewy Body Dementia feels more like a roller coaster. There are dramatic ups and downs, and they’re wildly unpredictable. Mobility issues are often much more prominent with LBD, as are the vivid dreams and hallucinations. And let me tell you, those hallucinations? They’re incredibly real to me. Thankfully, most of mine have been fairly benign — more odd than scary.

This one really stings. People think that if I just try harder — push through — I’ll be okay. But dementia doesn’t work that way. When my brain hits a wall, no amount of grit or willpower can break through it. Even just a few years ago, I was able to persevere through any task often through sheer willpower and stubbornness. Now, the wall is simply the wall. If anything, pushing harder just makes things worse: my symptoms escalate, and so does my frustration and anxiety. “Trying harder doesn’t help. It hurts.”

Here’s what actually makes a difference: **Routine.** I stick to daily patterns that keep me grounded and focused — with built-in time to rest and reflect. **Patience.** I get frustrated and overwhelmed easily. Patience — from others and from myself — goes a long way. **Humor.** I’ve always loved to laugh. Finding lightness in the heavy stuff keeps me going. Michele and I try to find something to laugh about every day — whether it’s something Theo has said or done, something we’ve seen on Facebook or TV, or an old comedy routine I’ve found on YouTube. Laughter really is the best medicine! **Flexibility.** Mine is limited these days. But caregivers who can adapt and roll with things? Lifesavers. And let me give a heartfelt shout-out to the people who walk this path with me. You know who you are. You make this journey not only bearable — you make it possible.

Even though Lewy Body Dementia is often misunderstood, I’ve been deeply moved by the kindness of those around me. Your compassion and willingness to meet me where I am — especially on my foggy days — means more than I can express.