Remain Calm And Carry On

Craig's UA came out clean. He does not have a UTI. 

Craig's agitation seems to be environmental. Too many loud noises, too much fast and/or wild movement around him, people speaking negatively and LOUDLY around him, flailing arms, etc. 

If you visit Craig, (and I hope you do!) once again I caution you to approach him very calmly, watch your body language and speak in a soft and positive voice. Please do not speak loudly. Craig hears you very well. Just because he is unable to respond quickly, if at all, it does not mean he is deaf. I cannot overstate enough to keep your voice down. He becomes overstimulated very easily. Some days he tolerates what goes on around him well. But you never know when that day will be. Or when the moment will present the intolerance. He does NOT like negative talk. He becomes very agitated when people speak badly about others or just unpleasant topics. He understands.

I believe the LBD amplifies everything in his head. 

I have been doing a lot of reading of articles, reading studies and scouring LBD forums on how other caregivers and doctors have dealt with rages of anger, hallucinations and delusions. One thing comes up a lot. And that is the use of Cholinesterase Inhibitors. The same ones used for Alzheimer's. We had stopped using Aricept and Namenda months ago. I'm wondering if there isn't a connection. The one cholinesterase inhibitor that comes up repeatedly in studies is Exelon. One study done was a double blind, multi center study with 120 patients in different countries with Lewy Body Dementia. 

Here are the findings:

Patients taking rivastigmine (Exelon) were significantly less apathetic and anxious, and had fewer delusions and hallucinations while on treatment than controls. Almost twice as many patients on rivastigmine (37, 63%), than on placebo (18, 30%), showed at least a 30% improvement from baseline. In the computerised cognitive assessment system and the neuropsychological tests, patients were significantly faster and better than those on placebo, particularly on tasks with a substantial attentional component. Both predefined primary efficacy measures differed significantly between rivastigmine and placebo. After drug discontinuation differences between rivastigmine and placebo tended to disappear. Known adverse events of cholinesterase inhibitors (nausea, vomiting, anorexia) were seen more frequently with rivastigmine than with placebo, but safety and tolerability of the drug in these mostly multimorbid patients were judged acceptable.

So guess what? Yep. We're going to start Craig on a low dose of Rivastigmine (Exelon). 

Let's hope and pray Craig will tolerate it well, improve his cognition and that Jesus will alleviate Craig's delusions and hallucinations through this drug.

That's the latest. Thanks for tuning in. I'll update as the Exelon kicks in.