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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
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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
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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
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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
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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
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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
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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
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I love getting into morning conversations with myself Matt’s continuing to relax in bed Sheba is in and out of the house I sit in my little corner, my nest, doing my thing Journaling, reading, digesting, conversing with myself Using my whole brain, not just the front left lobe which wants to take over and… Read more
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When a friend shares a wonderful piece of their life with me, it helps lift me up from my immediate circumstances Mary fully retired end of June She is traveling in beautiful places Italy’s lake region Shores of Croatia Seeing them thru pictures shared, explore, enjoy, be happy, is a gift shared Gary just shared… Read more
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The antidote to much anguish is sheer connectedness. People are terrified by what they cannot understand, but meaning and hope are most easily found in the company of others. “Having permission to NOT find a solution has helped me enjoy the time I spend with my mom—just as she is and who she is now.… Read more
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It’s hard to say exactly when this journey began We know when we got the diagnosis, when we had enough info to frame questions, make decisions It’s been 20 months since December 2023, almost 2 years Focus has been on processing the news, learning about the disease, planning the road ahead It took all my… Read more
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Even though Uncle Lewy is in the house, making a mess of our lives Matt is lucky Counting the ways seems therapeautic He has family who move heaven and earth to help him That definitely includes me, I’d realign the stars, sun and moon for him His sisters have been here right along side of… Read more
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At the moment, I am in a good place Same usual things are present: chair relocated to a strange location, unsure what I will find when I open a cabinet But, in this moment, I have let the frustrations I might have with those annoyances go Its my morning quiet time right now Matt sleeps… Read more
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We are under contract to sell the Virginia house now Took longer than average but I guess the right next family wasn’t ready Close isn’t for another 45 days, so we wait We will have one final chance to say goodbye, there is still time So many great memories of family times there This journey… Read more
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
Uncle Lewy 