Uncategorized

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

Mondays Nora comes to take care of Matt She helps him take a semi weekly shower, shave, takes care of a bunch of things that keeps the house in good order, Matt in good shape I had a plan to go check on the Sausalito property outdoor space refresh that is in progress while Nora… Read more

As I sat and listened to Matt bang around the kitchen, trying to clean up after breakfast, I realized it was probably time to celebrate a success Ken our brother in law, made this stove top cover for us last year We brought it home on Christmas Day and have been using it ever sense… Read more

Seems this is a thing with a lot of power, life giving and life taking power Its not like I didn’t know hydration was important, for a decade I have been carrying around a water bottle that syncs to my cell phone To this day people ask “why is your water bottle glowing?”; it glows… Read more

The last week or so have been pretty low key, nothing much going on Matt is sleeping late, the weather is discouraging us from attempting to get out and hike or really do much He continues to do strange things that indicate he is trying to control his environment, move this to there, so on… Read more

After all that has happened the last few weeks, we needed a little normal yesterday We had nothing on the schedule, totally blank Matt had a decent night sleep, so did I, after the whole patch thing He started his day back in his normal way, getting up once or twice in the morning, pretending… Read more

Much is made about moving from a pill version of a prescription to a patch Our neurologist recommended it on our last visit about a month ago It took a few weeks, but the RX arrived, so Sunday afternoon, after we had a really nice lunch in Petaluma with Terri and Rick at Lombardi’s (can… Read more

Matt sleeps a lot, I have mentioned it a few times As the weeks go by, he sleeps more and more So I looked this up on the web, looked up “should I be concerned my loved one with Lewy Body Dementia is sleeping alot” Here is what I learned: Excessive sleep is a common… Read more

(subtitle: drink more water) There is much debate about Matt’s beer joy He likes IPA, always has as far as I have known him Even now, when we go to the grocery store, he initially isn’t sure which section holds his friends, but he eventually gets there At home he enjoys the ritual of a… Read more

Mornings are hard around here, hard in the sense you never know what’s going to happen, how Matt will feel, when he will wake up, how grumpy, how “with it” will he be Its 11:24am, I made his breakfast a few hours ago, but I can’t coax him into eating it I did, after 4… Read more

My long time friend Lyn called yesterday She caught me out by the pool I told her about my pool episode, my pool battle, which had us both in stitches laughing, she said I had to blog about it It was day 3 of subbing for the pool guy, which hasn’t shown up for a… Read more

If this is anything, its a rollercoaster ride Sunday, Matt was dancing with family having a great time Tuesday, I called 911 Having trained with the fire department when I was a beach lifeguard, I have a tremendous amount of respect for those called to 911 response duty So I don’t call 911 without considerable… Read more

I so love Matt’s family, I really do Yesterday, we got word that Elliot’s band was playing at a casual venue in Marin Unfortunately, I had plans with Lori……so I asked Jenna to take him img_5515 He was in such good hands Everyone made Jenna feel so welcome, it was her first time meeting all… Read more