Uncle Lewy

Living out loud with Lewy Body Dementia

June 2026

  • Stamina

    Matt’s stamina is definitely less now than ever The last 2 days just venturing out of the house for a brief trip to the pool or to a low key, uncrowded, shaded winery to listen to music has brought him to his edge of tolerance Its hard to keep this in context, this is a… Read more

  • Dehydration, De Ja Vu

    I have learned something new about myself recently: I really don’t like relearning a lesson I have already should have learned It wasn’t long ago we had that horrible trip to the hospital, full of stress, the unknown We learned how important hydration is, how dehydration is directly correlated to temporary additional cognitive decline, adding… Read more

  • Refreshing Reflection

    My friend Janet read my blog about pictures from the past and sent a few I received them, studied them, all the while smiling I leaned into the feeling it gave me, a release from the walls that imprison me in our current reality December 2012, Janet and Chris brought their 3 sons to visit… Read more

  • Matt’s world doesn’t make sense to him anymore Its not the world he used to live in, things are so much more confusing, harder by far to navigate He used to be an active guy, hiking on Mt Tam 4, 6 miles a day, everyday That is no exaggeration Now, he can hardly complete a… Read more

  • Reflections

    I love it when family shares a fun picture of Matt I don’t know where this was, or when it was taken, but Eric said Lisa Admire shared it with him back in March It warms my heart to see these images, even though I wasn’t in Matt’s life when this happened This clearly is… Read more

  • Bi-Coastal Concerns

    While we live here on the west coast, another storm in brewing on the east coast As many of you know, mom and her friend Ron became companions during the pandemic They met at bridge, I think they were bridge partners first, and then things evolved into a situation where they spend most days and… Read more

  • More Shadows

    They warned it would take time to recover from a trip that spanned 3 time zones Only now is the true affect appearing Sunday was a low key day, Matt slept a good portion of the day I took the opportunity to do a work out by the pool, then find my swim suit and… Read more

  • Trip Shadows

    We’ve been back 3 days now from our east coast trip Matt has definitely been hallucinating more since we got back When he is awake there seems to constantly be string or something in his hand he needs to discard, but that’s pretty common place these days Over the last few days he has done… Read more

  • Made it back

    Yesterday we made it back to CA The trip was successful, all in all Matt weathered the time change, the location change, pretty well I expect the next few days he will want to just chill out, sleep a lot, hang out with Sheba I could see how the trip accumulated on him, the hardest… Read more

  • Happy Place

    Matt once called the lake, as he floated in the sun, his happy place I have felt that pretty much my entire life So it was awesome we could come here this weekend and enjoy for a while Usually, weekends at the lake are a wonderful chaos of multiple generations Some focused on food, managing… Read more