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Topic Lewy Body Dementia????? Go to previous topic Go to next topic Go to higher level

By makrivah On 2016.09.06 22:44
I'm becoming increasing suspicious that my husband has Lewy Body Dementia, not "just" declining Mild Cognitive Impairment (officially diagnosed November 2015). Does anyone have any experience or knowledge of LBD? What makes me leery is his wild fluctuations of lucidity. Swings previously were day to day. Now it can be hour to hour. Coupled with that is his apathy. I did a ton of research about apathy because I was falling into the trap of thinking he was "just lazy" which isn't the situation at all. Any advice would be greatly appreciated. PLEASE provide insight. We have a follow up appointment later this month and I want to be prepared to defend my thoughts.

By Busymom On 2016.09.07 15:15
Yes, his doctors were a little conflicted at first, but they have come to the certain conclusion that my husband has LBD. There aren't a lot of differences between Parkinson's Disease Dementia (PDD) and LBD but one of them that stands out is, which symptoms started first, motor symptoms or dementia-type symptoms? If the dementia symptoms started at least one year prior to any motor symptoms, they call it LBD. If the motor issues were present at least a year before any dementia symptoms, they call it PDD. Whichever you call it, it does of course get progressively worse, and as tough as the motor symptoms are, the dementia can drive a caregiver nuts. (I know too well!) It gets harder and harder for them to "think" at all, and they just kind of stare in this state of apathy, or sleep a lot. But they can have times of clarity as well, and you never know how that day will go.
For a couple of years, about 8 years ago, my husband started behaving strangely, worrying about odd things one would not usually worry about, and asking strange questions, over and over. We didn't know what to make of it at the time, a doctor chalked it up to stress, but then a couple of years later the movement symptoms started, and he was diagnosed with Parkinson's, but it's all gotten much worse rather quickly.
My husband says things, whether to me or our small children, and then doesn't remember saying it, or we can tell him things and he won't remember that we did and he asks us the same things over and over. He can't remember whether or not he did something so he does it repetitively, and accuses us of saying or doing things we never did. This is all very hard for the little kids. :(
He also has lost almost all of his math skills, and a lot of words too.
One other thing with LBD is people who have it are typically (but not always) more sensitive to medications than people with idiopathic Parkinson's. Everything makes my husband sick, just about all meds, even sinemet, he can't really take enough of anything to properly help him, so he can barely move at all anymore, the gait freeze and festination are profound, especially.
One thing's for's all miserable, for all of us, no matter how you label it...

By makrivah On 2016.09.07 15:42
Oh dear, my situation is no where near this bad. I shall count my blessings and keep on keeping on. Thank you for sharing.

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