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...

  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...

Do you ever get a little bit tired of life? Like you’re not really happy but you don’t wanna die Like you’re hangin’ by a thread but you gotta survive ‘Cause you gotta survive… Like your body’s in the room but you’re not really there Like you have empathy inside but you don’t really care Like you’re fresh out of love but it’s been in the air Am I past repair? Do you ever get a little bit tired of life? Like you’re not really happy but you don’t wanna die Like a numb little bug that’s gotta survive That’s gotta survive… Em Beihold (Lyrics to “Numb Little Bug”) I have been putting off this blog topic for a long time, because I haven't really been ready to talk about apathy and how it impacted my life during the early onset of my disease, and how it still affects me. This was such a defining symptom for me as I unknowingly began to grapple with this disease and is still one of the most difficult for me to deal with.  I guess I felt that it was time for me to reflect on this and t...

  I realized today that I had not posted anything here in a while, so I wanted to be sure to include the good as well as the bad and the ugly. Walking with Lewy is a rollercoaster, so when things are going well I really just try to enjoy the ride always knowing the downs are going to come at some point. As I think I mentioned in my last entry, I physically I have been feeling great. I am able to walk using just a cane for a little balance except when I'm over tired and am able to do more around the house than I have been. I do things more slowly and can only focus on one thing at a time, but at least they are getting done! As with everything with Lewy, however, there are trade offs. I find myself losing concentration quickly - especially when it involves conversation or talking. It is becoming harder to follow conversations or to listen while others around me are talking. I find myself drifting off - sometimes even closing my eyes because I feel exhausted from trying to concen...