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Lewy Body Dementia with Parkinson

Posted by James E Bruce @arlenephoto, Oct 4, 2018

My husband has Lewy Bodies with Parkinson.

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sillyblone | @sillyblone | 5 days ago
In reply to @raybepko "My wife has Lewy body dementia. She is in her fifth year and deteriorating rapidly. My..." + (show)
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My wife has Lewy body dementia. She is in her fifth year and deteriorating rapidly. My suggestions would be to learn everything you can about the disease, its progression, and its management. I have found that a lot of healthcare providers, including nurses and physicians, don’t really know much or anything about it. I’ve also found that I need to be very assertive in getting my wife that care she needs. The other and equally important thing is to take care of yourself. We hear that all the time, but I’m telling you it is essential. Good luck to you.

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@raybepko You are the advocate for her! You hit the nail on the head ! I never let anyone belittle or disrespect myself or my spouse! I knew more than some of the medical staff! There were so many ridiculous comments made and I would redirect! I really was not rude or disrespectful! But I knew him better than anyone else!! Keep it up and never settle! Hugs to you both!

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raybepko | @raybepko | 5 days ago
In reply to @sillyblone "@raybepko You are the advocate for her! You hit the nail on the head ! I..." + (show)
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@raybepko You are the advocate for her! You hit the nail on the head ! I never let anyone belittle or disrespect myself or my spouse! I knew more than some of the medical staff! There were so many ridiculous comments made and I would redirect! I really was not rude or disrespectful! But I knew him better than anyone else!! Keep it up and never settle! Hugs to you both!

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@sillyblone thank you. It is really insane but many medical staff a very little knowledge of Louie body dementia. I have to be there a good part of the day simply to keep her safe.

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sillyblone | @sillyblone | 5 days ago
In reply to @raybepko "@sillyblone thank you. It is really insane but many medical staff a very little knowledge of..." + (show)
Profile picture for raybepko @raybepko

@sillyblone thank you. It is really insane but many medical staff a very little knowledge of Louie body dementia. I have to be there a good part of the day simply to keep her safe.

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@raybepko I agree! My spouse had Parkinson’s Psychosis! They acted like I was an idiot and I knew nothing! I just said what was necessary and was not impressed with Neurologists at all! Stupid comments would be said that did not add up! Apathy instead of empathy! You cannot fool this wife one little bit! Stand your ground and ask questions anytime you need to! What are they going to do? Put u on restriction! I’m old but not stupid!!

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