I think I am going to try to do a symptom/ health update about Matt at least once a month now

Many folks ask, are genuinely interested, we greatly appreciate that

We go to see the neurologist later this month, a return visit, we think highly of him

Matt has gotten skin check, teeth checked, eyes checked; we are making the general health rounds with new CA doctors

Luckily we seem to only be dealing with one health issue, not a combo of things, for that I am grateful

We also go see a primary care physician for Matt this coming week

She has become my doctor and now she will become Matt’s

We hope to have her help us understand the reason he has lost leg control twice during hikes: once on Angel Island with the Lewy Lean and then again at Bartholomew in September (the neurologist strangely punted this to a primary care physician when I asked about it)

Matt is definitely aware his mental health is declining, his road ahead is short, not long

He said something to me yesterday as we left the UVA vs Cal football game that that was probably the last one he will get to go to

It was a long day, it’s been a few long days back to back, several out of the house adventures to big hikes, to the beach

We know the last few days have been over whelming for him

All the estrogen flying around the house with 3 or 4 women, add Sheba to the mix on top….he was out numbered in the chromosome count

Yesterday morning, he was clearly hallucinating, that was the first time Mary actually witnessed it

Other behaviors that used to be only exhibited in the evening he is doing in the morning, anytime of the day now

Not sure if the change in home energy with all us around or the fact we have fallen off our routine is causing this temporarily or if we are just seeing a natural change here. These answers can only be formed as guesses

The next few days we will try to slow things down, try to get him back on a routine

This morning he had a hand movement of some sort outside of the covers as we were waking up

I asked what he had tossed away

He said something about being in an RV, so we talked a bit about the road-trip he was on, the vacation he was having at that moment, in bed, in his head

We talked as best we could, between my hearing, his softening of voice, his difficulties getting the right words out

Michelle said during her trip, “I just wish I could have a conversation with Matt”. My response: I would like to have one with him too

I do the best I can verbally, sometimes I fill in a blank with a best guess and hope it keeps the semi conversation going along some sort of track

He tries his best, tries hard, I know he does

Conversation is as much entertainment, connectedness, as it is real information share these days I believe

All in all, he is hanging in there, trying to make sense of his world the Uncle Lewy has invaded

We still walk hand in hand down a foggy path with no clue the length of the journey, what’s around the corner ahead or even where that corner may even be, or if there is an upcoming corner at all

He just got up, walked toward me needing help figuring out how to put his flannel shirt on, button it

He moved a few things around the house, looks like he may crawl back in bed

This disease is relatively new on the dementia spectrum

It’s been known for years, but hadn’t been officially diagnosed prior autopsy until about a decade ago

Even Robin Williams with all his wealth, his ability to open doors just because of who he was…..in 2014, they didn’t have a way to tell him he for sure, or even for likely, his brain was invaded by Uncle Lewy while he was living

So they, the medical profession, are still figuring out how to treat this while some is living with it

That’s certainly a shame since it, supposedly is the second most frequent form of dementia after Alzeheimers

We don’t have the road markers that other journeys have, there are no “stages” that appear in predictable patterns to guide us, shed light

We can take some benefit from Parkinson’s research since the pathology is the same

But the Lewy journey, we do know, is shorter than Parkinson’s, presents different symptomatic manifestations

So I can’t tell you a cell count change, a measurement showing good or bad news, I can only share a lay woman’s observation, even his doctors rely heavily on that rather than instruments, X-rays or blood draws

We move along this foggy path, we know there are many loving hearts that are walking right there by us, we take great comfort from that daily

That, the love, care, interest of our village is the best RX out there, for us both!