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If this is anything, its a rollercoaster ride Sunday, Matt was dancing with family having a great time Tuesday, I called 911 Having trained with the fire department when I was a beach lifeguard, I have a tremendous amount of respect for those called to 911 response duty So I don’t call 911 without considerable… Read more
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I so love Matt’s family, I really do Yesterday, we got word that Elliot’s band was playing at a casual venue in Marin Unfortunately, I had plans with Lori……so I asked Jenna to take him img_5515 He was in such good hands Everyone made Jenna feel so welcome, it was her first time meeting all… Read more
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There is a lot going on right now Politics aside……in our little world…..there is a lot going on We went to the neurologist Friday The doc saw I had conversations with Matt’s primary care physician about the Redwoods, so he leaned into that a bit, brought the topic to the table to discuss I communicated… Read more
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When we moved here in 2024, we leased the farm house we are in with the understanding the owners intended to move back in summer 2026 Their son would be graduating and they’d then be free to move back to Sonoma It seemed like a reasonable agreement to make given the uncertainty of our journey… Read more
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Its been 10+ days since I landed a post here, all is pretty good, just a lot going on in Matt’s Village It was when I was packing for my trip to Charlotte area that I found the wandering abalone shell Matt moved it from the top of the dresser to the drawer, immediately under… Read more
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I finally found the wandering abalone…… <–Back to Uncle Lewy Read more
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Its been a few intense days, we got information yesterday from the vet that enables us to manage the situation Sheba has Intervertebral Disc Disease (IVDD for short) It is, I am learning quickly, a degenerative condition that impacts her lower spine, the section that is most affected by impact of walking up/down stairs, jumping… Read more
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Our little girl Sheba has been hurting lately Saturday night, early Sunday morning she yelped out in pain We were on the brink of taking her to the emergency vet…..but as we began to set things in motion, she came out of it, walked around like normal The same pattern repeated Sunday night, Monday early… Read more
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Things are generally good here, now Some of Matt’s evening behaviors that were so stressful (for me) have calmed down quite a bit, I think it has to do with the shift in med timing, consistency of med taking He still grabs stuff, moves it to places I later find, thinks the trash can is… Read more
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Our doggie Sheba is a smartie Mary sent a video of her pup Zoey working a dog puzzle Flip a lever, move an obstacle, get a treat, repeat We had to get a puzzle for the Shebs….. While Zoey used paw, nose and tongue Sheba maintained her balance on all four legs, used nose and… Read more
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Mary sent me a few things today: first, a piece of poetry based on the blog entries so far….. An Ode to Lewy A New Phase begins where the old paths end, Trying to honor the man, our love, our friend. In the quiet of Changes, as things start to shift, We look for the… Read more
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We went on a hike yesterday, exploring Jack London Park Maybe you have read a book of his, “The Call of the Wild” or “Sea Wolf” or many many others He was a pioneer in writing for a living and some of the things he did on his estate, ranch in Glen Ellen He lived… Read more
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If Matt had an native American Indian name, it might be “One Sock” Like “Soaring Eagle” or “Little Bird”, his would be One Sock Whenever the opportunity allows, he is wearing only one sock This morning, like many mornings, he wakes up, looking for coffee He is wearing one sock After we get home from… Read more
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I didn’t make too big of a deal about it, I just got Matt dressed and ready for his day We got in the car, I took a different route to get there When we entered the property, he didn’t say anything much When we got out of the car, he said “why are we… Read more
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I started the Uncle Lewy blog in June 2025, having zero experience doing anything like this Now, there are 137 posts communicating our journey I was feeling things were getting a bit bulky, there were some issues that needed fix’n, things could be more interesting Mary said, “why don’t you ask AI to help you”… Read more
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Its amazing how important these have become lately An hour difference in the morning to me, even 2 or 3 hours, isn’t that big of a thing But for Matt, it seems now to make a huge difference Left to his own rhythms, he seems to like to wake up around 9:30 or 10ish, at… Read more
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Ever changing………… We now have bed rails on both sides of the bed I have to get used to them too For some time now, he has been up and down for a portion of the night Typically its a bathroom destination, some times its a destination in the bedroom only he understands So far,… Read more
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Matt’s environmental dependence activities in the evening seem to have calmed down a bit I wonder if me letting him clean the dinner dishes helps I say “clean”, what I really probably truly mean is letting him go through the “act” of cleaning, being helpful He will wash them in the sink, sort of He… Read more
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Things seem to be in a relatively good place right now Our in home therapy’s will discharge fully today We have had the benefit of 8 weeks of help from physical and occupational therapists, nurses, social workers Soon we will begin to experiment with a new program Medicare launched in 2024 called GUIDE which sole… Read more
Living out loud with Lewy Body Dementia
a very personal journey……
Matt, CJ and Sheba……
If you are here to understand, catch up or just be with us for a moment,
you’re in the right place
Uncle Lewy 