Lewy Body disease is difficult to diagnose with symptoms similar to those of Parkinson’s and Alzheimer’s. However in the patient diagnosed with both Alzheimer’s and Lewy Body disease the average life span is only 3y 7 m. It is this rapid deterioration that is so brutal. My husband is in the last stages having been diagnosed using MRI, lumbar puncture and PET scans about 3 years ago. I know few people with the disease
and would welcome contact. The Lewy Body Society has an excellent website.
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My aunt died with Lewy body dementia and suffered for over 10 years. It was awful to see and I hope you can find others with more knowledge than me.
The extreme agitation caused by the hallucinations meant she had to be sedated as she could become violent. It was no life.
I am so sorry you are both going through this.
My stepfather had it. He lived a lot longer than the 2 years we were told was likely - 5 or 6 years, but that is very uncommon, apparently, and the last 2 were in a care home, as by then he needed full time care.
You have my sympathy, Andrealynne. It is a cruel disease, and just as cruel to the loved ones of those who have it. I hope your husband gets the care he needs and that you can make some time and care for you, too.
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