Matt’s stamina is definitely less now than ever The last 2 days just venturing out of the house for a brief trip to the pool or to a low key, uncrowded, shaded winery to listen to music has brought him to his edge of tolerance Its hard to keep this in context, this is a… Read more

I have learned something new about myself recently: I really don’t like relearning a lesson I have already should have learned It wasn’t long ago we had that horrible trip to the hospital, full of stress, the unknown We learned how important hydration is, how dehydration is directly correlated to temporary additional cognitive decline, adding… Read more

My friend Janet read my blog about pictures from the past and sent a few I received them, studied them, all the while smiling I leaned into the feeling it gave me, a release from the walls that imprison me in our current reality December 2012, Janet and Chris brought their 3 sons to visit… Read more

Matt’s world doesn’t make sense to him anymore Its not the world he used to live in, things are so much more confusing, harder by far to navigate He used to be an active guy, hiking on Mt Tam 4, 6 miles a day, everyday That is no exaggeration Now, he can hardly complete a… Read more

I love it when family shares a fun picture of Matt I don’t know where this was, or when it was taken, but Eric said Lisa Admire shared it with him back in March It warms my heart to see these images, even though I wasn’t in Matt’s life when this happened This clearly is… Read more

While we live here on the west coast, another storm in brewing on the east coast As many of you know, mom and her friend Ron became companions during the pandemic They met at bridge, I think they were bridge partners first, and then things evolved into a situation where they spend most days and… Read more

They warned it would take time to recover from a trip that spanned 3 time zones Only now is the true affect appearing Sunday was a low key day, Matt slept a good portion of the day I took the opportunity to do a work out by the pool, then find my swim suit and… Read more

We’ve been back 3 days now from our east coast trip Matt has definitely been hallucinating more since we got back When he is awake there seems to constantly be string or something in his hand he needs to discard, but that’s pretty common place these days Over the last few days he has done… Read more

Yesterday we made it back to CA The trip was successful, all in all Matt weathered the time change, the location change, pretty well I expect the next few days he will want to just chill out, sleep a lot, hang out with Sheba I could see how the trip accumulated on him, the hardest… Read more

Matt once called the lake, as he floated in the sun, his happy place I have felt that pretty much my entire life So it was awesome we could come here this weekend and enjoy for a while Usually, weekends at the lake are a wonderful chaos of multiple generations Some focused on food, managing… Read more

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