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.

Socialization

The other thing that came out of the appointment with his new doc was the true benefit of exercise and socialization

Matt and I have sorted out a good list of exercise that we both enjoy here

Monday, Wednesday, and Friday he boxes with Rock Steady (most of the time)

Most in the Rock Steady program have Parkinson’s (“Parkies”)

Parkinson’s and LBD have the same pathology, and Parkinson’s has had more research funding than LBD

So we hang and benefit from our Parkie friends

While he boxes, I go to the local high school which is conveniently across the street, and lap swim

This is so so good for both of us

Tuesday, Thursday, Saturday and Sunday are hiking days

We generally go around Lake Sutton or Bartholomew Park in Sonoma

When we can, we love to hit the trails on Mt Tam, or our #1 favorite Morning Sun Trail in Sausalito

These Marin hikes definitely increase travel time, so we tend to want to building doing other things in Marin, visiting old favorite haunts, seeing our people there

Family and friends definitely help with this

I love that so many of us enjoy hiking and can hike with Matt while he still can

So the doc gave us thumbs upon exercise

Socialization he said was also super important, socialization that he can engage in

Small group, larger group, as long as he can engage in some way, wall flowering probably not as beneficial

We’ve been super blessed to get time with Nelia, Mike and the kids; Lori, Mark and Gus, the amazing swimming therapy dog; Eric, Susan, Beth, Elliott, Karen, Ron and many more…..

We have been uber blessed with Barb and Corny’s serious involvement too

So we got another thumbs up from the doc on socialization

My improvement still can be sorting out how to engage with the Vintage House in a way that will be meaningful for Matt, helpful for him, and me too

This is all to say we are definitely getting some things right

We are abundantly grateful with all the support we have had from family and friends

This is to say how valuable and important your involvement is, will continue to be

We need to tighten up our daily routine here, to be sure

So things will continue to evolve, build

As I type up this blog, it’s Tuesday, so now time to go on our hike!

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