Symptoms?

It’s sometimes referred to as LBD, sometimes DLB, depending on the genesis of the disease.

It can progress in differing ways. It can begin as Parkinson’s. It may not and some patients only show the symptoms of tremors and shuffling later. Burt had very little of this.

He had hallucinations, severe but not scary, in the early part of the journey. When I claim “early part,” I mean after I became aware that something had gone awry. He dove right in, as I have often described it. He had Capgras Syndrome before or around the time of diagnosis. I remember I was able to talk to his NP from Mt. Sinai about it.

Having information, names- labels- for what is going on is comforting. I was grateful. You never fully know what to expect. Having a knowing ear to hear you through is, well, a bit like a life raft or a tonic.

There is nothing usual or normal about how Dementia with Lewy Bodies, or Lewy Body Disease, or Parkinson’s Dementia manifest.

Be prepared for anything but stay in the moment.

That is advice I will share with anyone dealing with any dementia, not just the above named.

It’s true LBD is described as having Parkinsonisms. To be clear, just as Burt showed very few signs of Parkinson’s, so too Parkinson’s does not have to lead to Parkinson’s Dementia.

P.S.

Here’s an insiders’ look at what it feels like in a YouTube clip called F**k Parkinson’s from Michael J. Fox and Harrison Ford I just found: