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.

Heart rate

We had quite the week this past week

Once our doc approved us for in home therapies, we have seen a physical therapist, occupational therapist, speech therapist and social worker

It’s been overwhelming for Matt

Many of them were assessments, so that a treatment plan could be worked up

We could have started the actual PT program Friday, but we had to say no, had to give Matt a break

His limits of what he can do in a day are reducing for sure

When the PT came Sunday, he checked his heart rate

It was way up there, like 189/112, crazy high

He was having a delusion…..his fear was the PT guy was going to take him away

Later, after a hike, his blood pressure was taken again, it was in the normal range

When the occupational therapist came, his BP was 95/76, so on the low side

It’s been in the middle a couple times I have checked

So the day after Christmas we are going to get a patch put on him at the docs office so his BP and heart can be monitored for a week

We have been advised that this disease can and will impact his body systems, in no particular order

Everything leads back to the thing he loves to do the most, hike

PT said while he can prescribe a PT plan, hiking works all the same things: strength, balance, core….Hiking brings his BP back to normal

So we will be doing as much of that as we can

It’s good for both of us

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