Many of you ask how Matt is doing

In my reflections of my journey as caregiver, you may get a glimpse

Here is more of a more direct medical update:

We are going through various tests to see if we can determine why he had the partial loss of leg control on a few hikes this summer

Last week he had an EKG to see if there were any heart issues that might be contributing to causing this

His neurologist and primary care physician are collaborating, let’s claim victory here! Collaboration is a beautiful thing! We got the seats full on the care team bus now!

The EKG came back normal, nothing alarming there, so his heart seems to be fine

The neurologist said it may well have been what they term as “fluctuation”

In Lewy body dementia, “fluctuations” refer to the core symptom of dramatic and spontaneous changes in a person’s attention, alertness, and cognition over minutes, hours, or days. These ups and downs often called the “roller coaster affect” are a key diagnostic feature of LBD, distinguishing it from other forms of dementia. Symptoms include episodes of severe confusion, or slurred speech, alternating with periods of relative clarity.

Cognitive fluctuations significantly affect walking by worsening existing motor symptoms (Parkinsonism) and impairing the cognitive processes for safe and coordinated movement.

This can include impaired judgement and spatial awareness, issues with dual-tasking, balance problems

So we are considering the issues on a few hikes my be par for the course with this diagnosis, we continue to rule out other causes

When the nuerologist tested him in the office, he mentioned the need for stair railings

Risk of falling up the stairs is greater than falling down the stairs

As if to underscore the point, Matt fell Sunday when we took a shortened version of the Bartholomew hike, he was going up hill

He always told me he learned to fall when we hiked Tam, he still has that engrained

He fell, but did not hit his head, or break a wrist…..he did scrape his leg which we found later, much later

So it’s become clear moving back to our Sausalito property now less likely for us next summer when this lease is up, there are too many 8 inch stairs to navigate, stairs inside and outside

This isn’t going to get better, only worse

Sunday we had some of those beautiful moments of clarity, we were able to go out to dinner and enjoy ourselves

The environment wasn’t too noisy, Matt was in a moment of clarity, his speech was more clear, his words not a word salad

So we are living this rollercoaster

His hours of sleeping, taking refuse in our comfy bed is greater these days

Sometimes it’s 10 am before he rises, sometimes it’s only breakfast, the smell of bacon that causes him to rise

He’s like a teenage boy in someways, clothes, shoes, underwear strewn here, there

I just sigh, pick things up, remove trip hazards

We have been struggling with his evening behavior

So the neurologist shifted one med to the evening to take and increased the dose

There are 2 terms floating around about this: Environmental dependence and Utilization behavior

Looking things up (yes, using AI), I read Utilization behavior isn’t a core symptom of LBD, but may dictate the disease has caused dysfunction in the frontal regions of the brain, potentially due to the spread of Lewy bodies to these areas

Utilization behavior is more common to frontotemperal dementia, the kind Bruce Willis apparently may have

It definitely describes what Matt does in the evenings: he feels compelled to pick up objects in their environment without external instruction or a goal oriented reason. And that comes with a lack of awareness that what he is doing is inappropriate.

It also helps explain why he might be compelled to turn on the gas stove……just doing, no game plan, not realizing the dangers

So getting a few answers, still guessing some, well a lot

His overall health seems good, however we will be doing a full blood panel soon, if there is something else to worry about, we will find out soon enough

Till then, both docs recommend physical therapy, so that the next seat on the bus for me to fill

And, swallow testing, this is more for baseline establishment, swallowing ability being a broad base concern with Uncle Lewy, so the other open seat is a speech pathologist

Thank God he is on Medicare!