Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey. Matt, CJ and Sheba….

This started spontaneously, part therapy, part keeping our peeps informed. I am finding my voice, evolving in this. The perspective is very much from my, CJ’s, perspective; the caregiving wife.

subscribe to follow…..comment to join us…..each eye that reads, is appreciated. This is a lonely making disease. Sharing moments is a bit of a sole suave.

new doc

We met our new California Neurologist this week

Change can be good

I learned more, got more informative answers then any other doc appointment

I came in prepared, I had 4 areas of questions

Clearly, part of the visit needed to focus on establishing a new relationship

We met with him for a bit over an hour, longer than any neurologist gave us before, and we get to see him or his colleague every 3 months not 6 months like before

My questions were around:

  • continued efficacy of his current meds
  • evening behaviors
  • fainting
  • speech / communication issues

I know each of you reading this will want to now why I listed fainting

So I will start there

This is new, we are still figuring this out

Last week, quick digression, we were trying to figure out why the local water company sent an email we might have a water leak

There is a smart meter on the water (which I think is pretty cool)

I followed the “find a leak” instructions which included finding the curbside meter and watching the movement when all known water is off in the house

Matt came out with me to check on this

We used a bar to remove the lid, leaned over to watch the movement of the meter

When Matt stood up straight, from leaning over from his waist, that’s when I felt his weight start to fall on me

He landed softly in the grass

It could have been much worse, we were standing on the curb, concrete and asphalt

I asked him if he had fainted before

He said yes, but couldn’t give me specifics

But he told the doc he has fallen in the shower

So that was important new information

My go to shopping mall, is, as you know, is Amazon

Interestingly, another small digression, Jeff Bezo’s mom had LBD, she passed just this month from it

In a few days, our main bathroom will start to look like a senior bathroom

We need to install handrails for Matt, non slip matts too

Since we are currently renting, what we can do will be limited to non-permanent installs

But it will look definitely like a Granny bathroom, fair warning to all who come over

Better to have an old lady bathroom than Matt in the ER

There was so much good information coming out of this appointment

Plenty of material for future blogs as I process all my notes

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