Uncle Lewy

Living out loud with Lewy Body Dementia

December 2025

  • Pooh Days

    Today was a difficult day, says Pooh Do you want to talk about it? Asked Piglet No, I don’t think so That’s ok, says Piglet, I know what difficult days are like. I quite often don’t feel like talking about it on my difficult days either But goodness, Piglet continues, difficult days are so much… Read more

  • Merry Christmas

    Its Christmas morning, quiet morning here, fresh air from the rain last night The place we stayed the last 2 nights is nestled in the redwoods, in Santa Cruz mountains Its, in a word, beautiful here, I love being face to face with nature, the elements (as long as those elements aren’t too hot or… Read more

  • 111

    This is my 111th post My one hundred and eleventh post (I just had to spell it out) When I started this in June, I had no idea if I was going to be able to keep it up I know I was desperately trying to shift my headspace to a new place We had… Read more

  • Heart rate

    We had quite the week this past week Once our doc approved us for in home therapies, we have seen a physical therapist, occupational therapist, speech therapist and social worker It’s been overwhelming for Matt Many of them were assessments, so that a treatment plan could be worked up We could have started the actual… Read more

  • cookies

    It’s never been easy to convince Matt to go shopping with me You know, mill about, looky here, looky there, girl fun shopping I do, however, have a great memory of him going with me to Barcelino in Sausalito He wanted to buy me something special So we had a bit of a little fashion… Read more

  • A Loss, A Win

    We suffered a loss, Courtney moved out For 2 months we had help, it seemed a good thing But there are things outside of our control, things outside of our reach For personal reasons she decided to go back to Kansas with no clear plan to return It’s a big set back I now know… Read more

  • Prayer Topics

    Just going to come right out and define it, asking for this kind of help we need in a clear way I sooooo appreciate many of you who want to help but geography is a hurdle So for my prayer warriors out there who love and care for us, this post is for you I… Read more

  • Yesterday

    Yesterday was a day I wanted to end as quickly as possible It started with the holdover of some interpersonal dynamics for the day before A realization that the PTSD formed in my childhood was still there, lurking dormently in the dark recesses of my brain I faced this head on early in our marriage… Read more

  • Shorter Days

    With the shortening of days, the coolness setting in The loss seems more poignant, more profound I have gone days on days not leaving the house When Matt is off with Courtney or family, I am heads down with work or some clean up project At night, when I am with him, his words are… Read more