Not too long ago we didn't think Craig would live throughout 2012. He was unresponsive, couldn't make eye contact and very lethargic. OVER MEDICATED. That's what the wrong medication and too much of it does to one with Lewy Body Dementia. It is SO imperative to diagnose Lewy Body early. But also hard to do in many cases until damage is already done by using drugs to treat symptoms of Alzheimer's.
"Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal........Traditional antipsychotic medications like Haloperidol should be avoided." - See more at: http://www.lbda.org
Even though Seroquel is an antipsychotic, Craig has always tolerated it well and improved with it. It is the only antipsychotic recommended to try with LBD. We're still tinkering with medication dosages - we always will be as the disease progresses through his brain, we'll be making adjustments for the effects. It's fascinating how much it helps him. It is hit and miss as there is so little information on Lewy Body. We recently increased his Seroquel yet again and now Craig is more like his old self. His hallucinations are the least frequent I have seen in him in over a year and don't last as long. His yelling is now usually because of something that is irritating him. Once we figure it out, he stops. We haven't had to give him a PRN in months. FANTASTIC!
"Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal........Traditional antipsychotic medications like Haloperidol should be avoided." - See more at: http://www.lbda.org
Even though Seroquel is an antipsychotic, Craig has always tolerated it well and improved with it. It is the only antipsychotic recommended to try with LBD. We're still tinkering with medication dosages - we always will be as the disease progresses through his brain, we'll be making adjustments for the effects. It's fascinating how much it helps him. It is hit and miss as there is so little information on Lewy Body. We recently increased his Seroquel yet again and now Craig is more like his old self. His hallucinations are the least frequent I have seen in him in over a year and don't last as long. His yelling is now usually because of something that is irritating him. Once we figure it out, he stops. We haven't had to give him a PRN in months. FANTASTIC!
Now that Craig has been off of the wrong class of drugs for several months, this is quite a difference.
(I hope the video comes through to those of you getting this on email. If not, please visit the blog page and take a look at this!)
He may not be able to speak as well as he once did, but his mind is still sharp. We watched the basketball finals and he was commenting on the plays. As you can see, he is still telling stories and still good natured. It was a really good night for him. He is still terminal, he still could go at anytime, (every day is different and he still yells) but until that time comes, he's mentally and physically in a much more comfortable place. Being re-diagnosed and moved home has made ALL the difference in the world. We can first hand observe his behavior, closely monitor his medication and with the help of his amazing Doctor, make the necessary adjustments quickly and easily. Grateful. Grateful. Grateful.
Lord I love this man!!! Lord I thank you for this gift!
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