Uncle Lewy

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


Recent moments as this journey continues…..

  • Helper

    We had a really good time and he was super useful I would love it if you extended my special thanks to him for being so helpful It was really fun hanging out with him –Susan’s text to me Saturday I called Susan, Matt’s cousin, to see if she had time Friday to hang with… Read more

  • Crystal Door Knobs

    Glass doorknobs look like crystal balls What if every time you opened a door you thought “this door is about to show me the future” The truth is, they always do –Grateful AF card deck We have a ton of crystal door knobs here at the farm house I feel like I peered, am peering… Read more

  • It seems a new pattern is showing up in our lives If Matt has a day of activity, the next day is a day of lots of rest We went to Sausalito Wednesday to over see a bunch of work happening there to the outside area With all the rain, there was so much overgrowth… Read more

  • Burnout Buster

    Mondays Nora comes to take care of Matt She helps him take a semi weekly shower, shave, takes care of a bunch of things that keeps the house in good order, Matt in good shape I had a plan to go check on the Sausalito property outdoor space refresh that is in progress while Nora… Read more

  • The Kitchen

    As I sat and listened to Matt bang around the kitchen, trying to clean up after breakfast, I realized it was probably time to celebrate a success Ken our brother in law, made this stove top cover for us last year We brought it home on Christmas Day and have been using it ever sense… Read more

  • hyDRATION

    Seems this is a thing with a lot of power, life giving and life taking power Its not like I didn’t know hydration was important, for a decade I have been carrying around a water bottle that syncs to my cell phone To this day people ask “why is your water bottle glowing?”; it glows… Read more

  • Calm Between

    The last week or so have been pretty low key, nothing much going on Matt is sleeping late, the weather is discouraging us from attempting to get out and hike or really do much He continues to do strange things that indicate he is trying to control his environment, move this to there, so on… Read more

  • A Little Normal

    After all that has happened the last few weeks, we needed a little normal yesterday We had nothing on the schedule, totally blank Matt had a decent night sleep, so did I, after the whole patch thing He started his day back in his normal way, getting up once or twice in the morning, pretending… Read more

  • The Patch

    Much is made about moving from a pill version of a prescription to a patch Our neurologist recommended it on our last visit about a month ago It took a few weeks, but the RX arrived, so Sunday afternoon, after we had a really nice lunch in Petaluma with Terri and Rick at Lombardi’s (can… Read more

  • Sleepiness

    Matt sleeps a lot, I have mentioned it a few times As the weeks go by, he sleeps more and more So I looked this up on the web, looked up “should I be concerned my loved one with Lewy Body Dementia is sleeping alot” Here is what I learned: Excessive sleep is a common… Read more

  • (subtitle: drink more water) There is much debate about Matt’s beer joy He likes IPA, always has as far as I have known him Even now, when we go to the grocery store, he initially isn’t sure which section holds his friends, but he eventually gets there At home he enjoys the ritual of a… Read more

  • Mornings

    Mornings are hard around here, hard in the sense you never know what’s going to happen, how Matt will feel, when he will wake up, how grumpy, how “with it” will he be Its 11:24am, I made his breakfast a few hours ago, but I can’t coax him into eating it I did, after 4… Read more

  • The Pool

    My long time friend Lyn called yesterday She caught me out by the pool I told her about my pool episode, my pool battle, which had us both in stitches laughing, she said I had to blog about it It was day 3 of subbing for the pool guy, which hasn’t shown up for a… Read more

  • Rollercoaster

    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

  • Family, Dancing

    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

  • a lot

    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

  • Farmhouse Continues…

    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

  • Update 3.22.26

    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

  • 23 Days Later

    I finally found the wandering abalone…… <–Back to Uncle Lewy Read more

  • Sheba update

    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