Uncle Lewy

Living out loud with Lewy Body Dementia

August 2025

  • Socialization

    The other thing that came out of the appointment with his new doc was the true benefit of exercise and socialization Matt and I have sorted out a good list of exercise that we both enjoy here Monday, Wednesday, and Friday he boxes with Rock Steady (most of the time) Most in the Rock Steady… Read more

  • Evening behaviors

    Early in the blogs I was screaming out about his evening behaviors We thought it was anxiety and/or sundowners The behaviors keep me on edge, raise my stress levels, cause us to have unpleasent exchanges So our prior doc thought it was Sundowner’s syndrome and prescribed an anti-anxiety med which he felt would not interfere… Read more

  • new doc

    We met our new California Neurologist this week Change can be good I learned more, got more informative answers then any other doc appointment I came in prepared, I had 4 areas of questions Clearly, part of the visit needed to focus on establishing a new relationship We met with him for a bit over… Read more

  • Word salad

    A lot of what Matt says now is nonsense As hard as it is to work through the mumbles Lean in to be closer to hear better Overcome my own hearing challenges (thanks Dad!) When I do hear his combo of words, they don’t often make sense Yesterday at breakfast, he was saying something about… Read more

  • collateral damage, update

    I submitted my truth to the Virginia Board of Accountancy in July I fell 30+ hours short of my education requirements due to the fact our lives were invaded by Uncle Lewy The VA Board of Accountancy had to determine what kind of disciplinary action they would take due to my self reported short fall… Read more

  • house, update

    We are under contract again It was a miracle, but something good did come out of the open house Saturday The current prospective buyers were the first ones to see it back in May Close date is mid-September, so fairly quick, no contingencies They used the home inspection from hell I am not holding my… Read more

  • Roller coaster

    This weekend was a bit of a roller coaster ride Some highs, some lows, a few unexpected turns Saturday began with a punch list review of fix it things for our California house Yes we are renting….so I am grateful this isn’t my punch list to manage, but it was still exhausting Then, our Virginia… Read more

  • prayers for the house

    It’s been quite the journey, trying to sell the Virginia house We still need to find a buyer A family to call the house a home Today is another open house, please pray obstacles, traffic, weather don’t keep that special family away Maybe they have a grandson who will be fascinated by the sand fiddlers… Read more

  • meta

    May you be healthy May you find joy May you be safe May you live your life with ease One of the gifts Cheryl Hutto gave me during my coaching sessions in 2024 was this Meta meditation The line that took me to my knees was about living with ease I could feel it, taste… Read more

  • I didn’t need that!

    Woke up to a voicemail from the Isle of Wight Sheriff’s Office Called the number provided for the deputy, got his voicemail On my way to my annual physical with my doc, sheriff’s office calls back Apparently, I didn’t show up for a grand jury hearing, failed to do my civic duty Sorry, what? Mam,… Read more

  • Gus, the therapy dog

    Gus is Lori & Mark’s dog He is a beautiful golden retriever Still a bit of a puppy, only 2 1/2 years old They came for a poolside happy hour Lori warned me as soon as Gus got into the pool gate, he would be immediately in the pool And she was right, not a… Read more

  • Wandering and agitation

    Restlessness and agitation: LBD can cause a general state of restlessness, leading individuals to fidget, pace, or make repetitive movements. This can be triggered by anxiety, confusion, or even just a need to move around. Cognitive impairment problems with thinking, memory and decision making can lead to confusion and disorientation. This manifests as pacing as… Read more

  • Delusions

    Individuals may misinterpret what they are experiencing and form false beliefs about their surroundings and the people in them. This is the hard part, this is the piece that hurts the most, is a stab to the heart Anyone who loves another enough to stand by their loved one thru thick and thin, be it… Read more

  • disrupted processing

    In LBD, the brain’s visual processing systems which receive sensory information, and the recognition system, which interprets that information, are both affected. This can lead to misinterpretation of what is seen, heard or even felt. Yesterday morning, after I took an early work call upstairs, Matt came up and asked if they were taking him… Read more

  • courage

    I run up against courage limitations in the strangest places There are many resources out there for “adult day care” or “respite” offerings Most are at senior type centers News flash: both Matt and I don’t see ourselves as seniors….but we do appreciate the Tuesday discount at the grocery and hardware store (a dose of… Read more