Does anyone have a good understanding of lewy body dementia?

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This is a form of dementia with Parkinson like tremors, but it is not Parkinsons. I am finding that not many doctors understand this so I am turning to you all if anyone has some experience in this. For the most part, what seems to work best when mom starts with those tremors is just sitting next to her holding her close, sometimes for hours, or even just putting her to bed and lying next to her holding her. It seems to comfort, calm her. Let me know what you all do. cadams

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I think your instincts are pretty good!

One of the core characteristics of LBD that is used to diagnose the disease is cognitive fluctuations. She might not know where the bathroom is in the morning, but be able to navigate to any place in the house in the afternoon. This is true to some extent of all dementia, but it is very pronounced in LBD. This leads some people to think the severe symptoms are being faked. No! The fluctuation is genuine and not within their control.

Does your mother by any chance have diabetes? I ask because if I was profusely sweating and then had tremors in my hands, I would immediately know that something was wrong with my blood sugar levels. For your mother these symptoms are probably (but not necessarily) related to LBD. I just want to point out that a person with dementia can develop other disorders as well. It is good to discuss all new symptoms with her doctor.

Cadams, you are a very loving daughter and caregiver. You mother is certainly lucky to have you. Sitting with her or lying with her for hours and being with her every time she walks and trying to make meals she will like and all the other aspects of caregiving take huge amounts of time. Be sure you are also taking care of yourself. Are there other people in the household, or is it just you and Mom? In order to devote a lot of time to the care of my husband I hired out more mundane tasks. I had a housekeeper. I often relied on prepared food from the deli or restaurant or kept my cooking simple. I had someone for household and yard maintenance.

The other thing caregivers need to do is get away from caregiving regularly. You must have someone who can stay with Mom while you have some time to yourself.

Is your mom taking any medications for her symptoms?
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Jeanne-Thanks for your reply. I just now got it.....for some reason.....
It's not possible to go all the way to Jacksonville. We barely are able to get down the street to the foot doctor. Mom is more and more bed bound, though I AM able to occasionally get her up.....after hours, sometimes days of prodding. And even then, we just stay in her room......more and more.
I do all the things you suggested----blankets on her when in a chair, videos, teddy bear....so I guess my instincts are pretty good.
She IS unsteady on her feet, but I don't ever have her walk alone. I am always by her side and I have a walker with a seat in it that I use in the house to wheel her around.
I haven't noticed anymore of the tremors this week. She hasn't had an episode for quite a while. Mom was drenched in sweat for 2 days in a row and then I noticed the tremor in her hand, so my research showed that this was all part of the Lewy Body.
I have noticed this week that she seems another level downward. She forgot what the bathroom was for and how to go to the bathroom. She seems almost afraid or reluctant to go out of her room and always wants the bedroom and bathroom door closed. Today she was oddly ungrateful for the specially prepared meal and on and on.
I guess the worst part for me is feeling helpless and not sure what to do or if I am doing the right thing.......
So what are your thoughts on this??? thanks cadams
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Science is learning more and more about this disease. A good source of information is the LBD Association website. You can also call them to find out if there are doctors in your area especially knowledgeable about the disease. The Michael J Fox Foundation website has very useful information about the Parkinson's aspects of this disease.

I see that you are about 220 miles from Jacksonville. It might be worthwhile to take your mother to Mayo Clinic there, for their expertise in dementia, including LBD. You won't have to go there often. Mom's day-to-day needs would be met by her local PCP (ideally a geriatrician).

The pathology of Parkinson's and Lewy Body Dementia is the same. In fact, Dr. Lewy first discovered these tiny bodies of a mutated protein in the autopsied brains of Parkinson's patients. Symptoms depend on where in brain these bodies lodge. They can include physical symptoms that are seen in Parkinson's and the cognitive symptoms of dementia. LBD (and Parkinson's with Dementia) is considered a particularly difficult dementia for the caregivers, because the behavioral symptoms often come very early in the disease.

The same medications used to treat tremors in Parkinson's are often used for LBD. A possible side effect, though, is to make the cognitive problems worse. That is why it is important to be dealing with a doctor who thoroughly understands the disease.

My husband took the Parkinson's medication. His tremors were not terrible. Sometimes he would indicate he couldn't sign something and I'd either sign it for him or wait until his hand was steadier. We just accepted it as part of his disease and worked around it. I don't know how much worse it might have been without the medication.

Holding someone with almost any kind of dementia is usually comforting to them, so you have hit upon a helpful approach.

You might also try tucking blankets around her in a comfortable chair and putting on a video for her to watch as a distraction. I wonder if it might be a comforting distract for her to have a plush teddy bear to hug.

Is she also unsteady on her feet? Has she been experiencing a lot of falls?
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Jeanne is a night owl
I hope she finds you or try to find one of her answers - she's on the most useful posts and then private message her

Best wishes to you
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The name sounds familiar, but I am unsure of how
to reach her. Any ideas?
cadams
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Find "jeannegibbs" on this forum. She cared for her husband through his Lewy-Body experience. Jeanne delivers solid nuts-and-blots advice, along with good emotional insights.
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Find "jeannegibbs" on this forum. She cared for her husband through his Lewy-Body experience. Jeanne delivers solid nuts-and-blots advice, along with good emotional insights.
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