May 2026

We made it to Virginia I feel like I have been working to get us here for a month! Matt did great on the way there, even though we exited the house later than I wanted and burned all the time “cushion” I had built into the plan He stayed with the program, followed along… Read more

A few weeks ago, we had a going away party for Debbie at the pool A friend from our Sausalito Ferry commuting days, Ken, asked about the Hobie, “did I take her out” Seeing someone with interest in going out, knowing that was my huge hurdle because Matt no longer could help rig her nor… Read more

So I did have a continuation of my epic break set to post today, but several of you have reached out asking how Matt is because of yesterday’s post (thank you for those notes of concern!) I thought it better to update you on what happened next, let you know how things turned out, that… Read more

This continues the saga of switching from the pill version of an RX to the patch Its Thursday evening, I’ve only been able to get him to eat a portion of a bagette with butter on it The I remember we have pizza from meeting Steve at Bar Bocce earlier in the week I heat… Read more

About 10 years ago, Matt and I went to Tahiti It was one of those post busy season trips that we had a routine of taking right after the deadline Now that I think about it, it was the last big trip like that he planned for us that we took We sailed on a… Read more

A month back or so, we tried to switch Matt to a patch form of one of his meds so that he would have a more consistent dose of this helpful med in his system The hope is his behavior would be more consistent throughout the day, avoid some strange behaviors that seem to occur… Read more

Normal people go out to dinner sometimes They clean up a little, dress a bit more freshly, go out to a nice restaurant We have been avoiding that because Uncle Lewy hasn’t made it easy to enjoy these expensive outings Yesterday, for dinner, me and my guy went out to dinner He chose what he… Read more

Big word, big function Big play ground for Uncle Lewy In full: Autonomic Nervous System (ANS) ANS is the division of the nervous system that operates internal organs, smooth muscles and glands It regulates a lot of things like heart rate, digestion, respiration, lots of really important things A large part of the conversations we… Read more

We went to the second day club program in town yesterday Its very clear this ain’t Matt’s thing In thinking this through, these day clubs are a group activity setting Matt has always been a bit of a lone wolf Hiking on Mt Tam with just the dogs, not with a group of people He… Read more

We met up with Matt’s neurologist Friday morning, before Matt went on to help with the plumbing issues that Susan was working on for Lucy We hadn’t gotten a lot of feedback from the doctor about the failed attempt to get the “patch” to work until our appointment Friday The goal, hope, is that the… Read more

We had a really good time and he was super useful I would love it if you extended my special thanks to him for being so helpful It was really fun hanging out with him –Susan’s text to me Saturday I called Susan, Matt’s cousin, to see if she had time Friday to hang with… Read more

Glass doorknobs look like crystal balls What if every time you opened a door you thought “this door is about to show me the future” The truth is, they always do –Grateful AF card deck We have a ton of crystal door knobs here at the farm house I feel like I peered, am peering… Read more

It seems a new pattern is showing up in our lives If Matt has a day of activity, the next day is a day of lots of rest We went to Sausalito Wednesday to over see a bunch of work happening there to the outside area With all the rain, there was so much overgrowth… Read more