Uncle Lewy

Living out loud with Lewy Body Dementia

The Lewy Lean

Its wierd

Gravity doesn’t work that way

He leans to the right

Right is downhill

He slows down

But he is okay for now

Its just wierd

We keep walking

The path we are on is uneven

I am growing concerned

He says he is fine

But he is leaning severely from the waist, to the right

Its wierd

Its a beautiful day

We stop to take a selfie with San Francisco in the background

He says he is ok

We keep walking

We are halfway around the island

He slows more

He begins to lean backwards

He is still leaning to his right

So its really wierd now

We are going downhill

He is getting more wobbly on is feet

We offer to flank him, give him support

He refuses at first

Probably embarrased

But then its ok,

We flank him

He is leaning back hard

I am trying to support him

My cell phone battery died earlier

So I ask EB to try to contact the Ranger

Matt and I sit on a wall

We rest

EB calls numbers she has found on the web

I know the Rangers have a truck because the yacht club got their assistance for a BBQ

This is much more important

I know they are here

Why is it so hard to reach them?

Why aren’t emergency numbers posted on directional signs here?

They come

Scott & Casey

In a lifeguard truck with surf board on top

They are kind, gentle, friendly, competent.

We ride down to the marina where our boat is waiting

Everyone is calm

Its still wierd

The Tiburon Fire & Rescue come

They check his vitals

It was impressive seeing them approach the dock

Boat wake wide

Emergency light engaged signaling they were on a mission….to us

Usually its someone else….its us this time

Kind, competent….strongly recommending ambulance transfer to the hospital

Their field EKG suggests a PVC? What the heck is that?

I ask EB to remember the term because I know I won’t

The paramedics are concerned this PVC could be more serious

I don’t know….I can’t even remember what its name is.

Matt doesn’t want to go to the hospital, that’s clear

The paramedics ask if I am making medical decisions for him

I look at Matt

He can still make decisions

There is no cure

Will we likely learn something important in ER?

No, he doesn’t want to go.

He signs the waiver.

They help him back to out boat.

They are kind, patient, competent.

This is wierd, but not so much anymore

We are OK, Matt, EB and me.

Working as a team.

EB has EMT training

This is good, assuring.

We call Susan

She will have great perspective

She is driving back from a potest

Today is June 14, 2025

The whole family was out there somewhere

This family is democracy

She asks if they did the common field tests

Did he pass? Yes.

But they found this PVC thing.

“Alot of people have PVC” she says

Should we go to the hospital?

“if it were me, I would”

But wont we likely just be tied up there 6-8 hours?

“yes, probably”

My sense is that we just need to get him home to rest. 6-8 hours in ER won’t be restful

“I trust your judgement since you are living and seeing him daily”

I feel better having the call

We motor back to home port

We all get home safely

We eat

Rest.

I send out some help requests.

Here is what happened….

What’s going on Doc?

Its over a messaging app.

I won’t hear from him for days.

I send the same message to Helen.

She is GOD sent!

Overnight she shares on point info

Its Lewy Lean

Its common

PVC is also common

Its Uncle Lewy playing his dirty tricks

I am glad we didn’t go to the ER.

Quality of life is paramount, the priority

Going home to rest, have a quiet dinner, go to bed early….that’s quality of life.

Its the morning after

His posture is straight…well, normal straight

We talk

Overstimulation perhaps?

He suggests: time zone change.

OMG, yes. We came back from the east coast 3 days ago.

Of course, Helen warned of the impact of day light savings on him

And time zone changes.

For now, that must have been the trigger…

We will take it easy today

Its not so wierd anymore.

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