My Walk with Lewy

Introduction Living with Lewy Body Dementia and Parkinson’s has changed a lot about how I function day to day. One of the biggest losses for me has been my ability to organize my thoughts and get them down in writing. I used to enjoy writing—it helped me process, express myself, and stay connected with others. But over time, that process became harder and harder. Typing is physically difficult now because of tremors, and I can no longer think in long, flowing paragraphs. My thoughts come in short bursts, and even trying to outline something on the computer feels overwhelming. Voice‑to‑text tools like Siri didn’t help much either. They required so much cleanup that I ended up giving up more often than not. For a while, I just stopped trying to write. That changed when I discovered two AI tools—Letterly and ChatGPT. What started as curiosity from watching some YouTube videos turned into a surprising new way to connect with my thoughts and re‑engage with writing. These tools didn’t just h...

Living with Lewy Body Dementia from the Inside Out 1. Why I’m Writing This 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. 2. Misconception #1: “You Seem Fine to Me” 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 kno...

     “Recovery isn’t a straight path— It’s a thousand quiet decisions To get up again, Even when the world doesn’t feel like your own.”      At the end of January—or maybe the beginning of February—I was discharged from Littleton Hospital and admitted to the rehabilitation wing at Country Village nursing home. It wasn’t my first choice. But it was close to home, had immediate availability, and, importantly, accepted my insurance.      My experience at Country Village was mixed. As someone living with Lewy Body Dementia, the thought of entering a nursing home—short-term or not—was terrifying. I didn’t know what to expect, and what I found there ended up shaping my view of nursing homes in general. First Impressions and the Fog of Arrival      The transition was jarring. I was transported by ambulance—surrounded by strangers—feeling foggy and weak. Arriving at Country Village, I was met by several staff members, including Michele...