Hi I'm new here. My husband's mother has been diagnosed with Lewey Body Disease. We think she's had it for at least 3 years. Finally got her to a neurologist who told us about this disease. We can't seem to find out how this disease progresses. What happens to the person as the disease progresses? What symptons do we look for in his mother to know the disease is getting worse. I've ready this disease can last up to 4-7 years is that correct? Thank you for any information you can give us on the progression of this disease.

My Mom died of Lewy Body Dementia in August of this year at age 67. We are guessing it was about a 7 year progression for her but its hard to tell exactly when it starts. For info: www.lewybodydementia.org
and
www.helpguide.org/elder/lewy_body_disease
and
www.ninds.nih.gov/disorders/dementiawithlewybodies/dementiawithlewybodies
and
www.lewybodyjournal.org

The biggest difference I noticed in my Mom compared to other AZ patients in the NH was that the AZ people seem to do a slow steady decline whereas my Mom declined in fits and starts and it was very unpredictable. Once a skill is gone, its gone. The decline is fast and gets faster toward the end. Little things like a bladder infection would completely floor her. Her speech was impaired which started as being unable to find a word and less than three years later her speech was total nonesense. The hallucinations associated with Lewy Body make it hard to know if what they are telling you really happened or is fantasy because to them it is all real. The meds for the tremors increase the hallucinations. Finding a med balence is the key but its hard. Sorry to have no "good" advice. There is nothing good about this disease. It sucks for everyone. My advice is to stay in touch with supports, ask lots of questions, trust your instincts. My one regret with my Mom's care is that I wasn't pushier sooner with doctors and etc. This site is great because different people have such different experiences and they all have good ideas that you can choose from.

This message has been edited. Last edited by: Hannah,

Jo53, you are fortunate to have a doctor who is aware of LBD.My husband had such and so many in the medical profession are ignorant to it.They view it as not important but they are wrong.The refernces posted is a good one.The symptoms are differnt the AD if they would take the time to observe and research.With proper medication the dementia does not progress that fast.Many of the symptoms remain the same.They become enhanced once in a while but they are not consistant.I was fortunate to have good doctors at the VA that listened to me.
One doctor told me I caught him with egg on his face when mentioning LBD.I wanted to tell him it looked like shit and not egg
Many with Parkinsons have LBD.
THE ONE THING YOU HAVE TO WATCH IS MEDS

Welcome Jo,

Here is an excellent article from WebMD about it to get you started.
http://www.webmd.com/mental-health/dementia-lewy-bodies

Stick around and some of our members with experience in LBD will probably add their advice.

This is a great group of people with the biggest hearts and tons of experience to share.
Know that now that you've found us you are not alone! Welcome!