Uncle Lewy

Living out loud with Lewy Body Dementia

Uncategorized

  • 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

  • Sheba

    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

  • Jack London

    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

  • One Sock

    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

  • Day Club — a complete bust

    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

  • Day Club

    Part of the respite plan is to have Matt go to Day Club 2 days per week I tried to get him to go several times, unsuccessfully, so I called in help last Friday Lo came for a short shift and got him up, out of the house, and to the club with me So… Read more

  • Blog Updates

    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

  • Accountability

    Accountability is important in any relationship, IMHO When you dial it in, it can be a beautiful thing, a thing easily taken for granted Add Uncle Lewy into the equation and it gets confusing Our situation, our marriage, has always been the merger of 2 independent people So in the early years we had to… Read more

  • 68.8

    That’s how many CPE hours I needed to log, take, before New Years I had this on my to do list all fall November I took 8 hours, so when I looked at it, in crises mode, second week of December, I still needed 60 hours Being a numbers person, I calculated how many hours… Read more

  • 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

  • Gratefulness

    ‘Tis the season to express gratefulness And I am, even in the midst of sadness and things we just can’t change or control I am grateful for family, those with us here, now, those still on earth, but further away, those who have been part of our lives but who have gone on, ahead Those… Read more

  • Paddling

    I finally got to go out paddling on the Napa River Sunday on an outrigger canoe Courtney was with Matt, so I took off from the house around 8:15 am It was a sea layer day, no wind, not warm but not cold Actually, it was perfect weather to be outside There were 14 people,… Read more