Some Helpful Resources

 Lewy Body Dementia Association

Lewy Body Dementia Resource Center

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A Day in the Life with Lewy

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Some people imagine living with dementia means every day is the same — slow, foggy, confusing. But with Lewy Body Dementia, every day is a new negotiation between what I planned and what my brain and body will actually allow. Here’s a glimpse into what that looks like for me right now. ☀️   Mornings: Faith, Fog, and Finding My Feet Opening my eyes in every day is always a revelation – I never know how it’s going to go!  While rare mornings find me clear-headed, most days I wake foggy – s ometimes very foggy. I love sunny mornings, because I can open the blinds next to my bed and the sun streams in, often giving me a much-needed perk.    An open window allows me to hear the birds when they start their day, and the spring brought the smell of the lilac bush right outside my window.    Now the summer brings the smell of freshly cut grass, or in the evenings sometimes the unexpected skunk cameo!  Many days it takes quite a bit of time for my brain to clear...
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How AI Helped Me Find My Voice Again

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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...
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Still Keeping On

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  So it's been quite a while since I've posted here.  It seems like a lot has happened - both good and not so good.  Summer 2024 was awesome - I felt really strong and was very active both mentally and physically. Toward the end of August and through September, however, the batteries started running out. I noticed I began forgetting people - not a lot and not always. I recognize faces. I look at people and know I should know who they are, but I do not always remember their names or make any connections. even if Michele tells me who they are I often still don't make a connection. I ran into a neighbor I had lived next to for 30 years before we moved and could not remember his name.  It's very frustrating and actually quite maddening at times.  My confusion started getting worse about the same time. I got lost several times just one street over from my house. Thankfully Pippin was with me and kept pulling me in the right direction. It's a little sad to realize tha...
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