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Lewy Body Dementia

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Old 02-16-2009, 04:59 AM   #1
Martha H
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Lewy Body Dementia

Lewy body dementia shares characteristics with both Alzheimer's disease and Parkinson's disease. Like Alzheimer's, it causes confusion. Like Parkinson's, it can result in rigid muscles, slowed movement and tremors.

But the most striking symptom of Lewy body dementia may be its visual hallucinations, which can be one of the first signs of the disorder. Hallucinations may range from abstract shapes or colors to conversations with deceased loved ones.

In Lewy body dementia, abnormal round structures — called Lewy bodies — develop in regions of your brain involved in thinking and movement. While risk increases with age, Lewy body dementia is estimated to affect less than 1 percent of the population over the age of 65.

Dear Friends,

I found this info in a medical dictionary ..there is also a Lewy Body Association you can contact if your loved one has this. Good luck.


Last edited by Martha H; 02-16-2009 at 05:01 AM. Reason: typo

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Old 02-16-2009, 03:24 PM   #2
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Re: Lewy Body Dementia

Dearest Martha,
I'm not sure if your post was sparked due to my questions earlier about it, if so I thank you very much for the time to look it up and sharing it with us. I've never heard of anyone here mentioning this type of dementia.....but your post below does ring true with Grandma's behaviour. The hallucinations are really bad for her.......I was saying in another post, that most days even in the middle of the day Uncle closes the drapes because she sees these "people" outside the window.
Grandma has an entire cabinet full of medications that they gave her to try help with these horrible hallucinations but they seemed to cause very bad behaviour.
Question, all these meds that they gave AD long do they take to kick in? I know for an average person it may take some time for them to get into the system and start working, in which case some side effects may occur while the body adjusts. Would it be the same in cases of dementia patients? I'm not sure that grandma has ever been on a medication long enough for it to fully take effect. The side effects always have such an adverse affect on her. And then there is her age, she is her body even able to process this medication anymore? I wish so much there was a medication, but dont know what could be out there that she hasnt tried already.....sheesh!!!!! It's like looking for a needle in a haystack.
Martha, your mom was 99, was she still on meds that long? If so, what was she on and what did it help her with if you dont mind me asking?

Love, Caroline xo

Old 02-16-2009, 03:36 PM   #3
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Re: Lewy Body Dementia

I hate it when I hear of people who have mounds and mounds of medication. I would think they'd be from all different doctors, etc.

My husband's grandmother talked to me on the phone one day and she didn't sound like herself. I called my mother-in-law and asked her to please call NanaNana. She did and also didn't like what she sounded like, so she called her brother who went down, picked up NanaNana, took her into a NYC hospital.

That night a doctor walked in and said "where's all the medicine your mother is taking. All of it!". My Uncle showed him the shelf of pills he brought to the hospital when he brought her in. The doctor walked to the corner, picked up a wastebasket, walked to the shelf and in one fell swoop, he put them in the trash.

He said, first we're going to detox your mother. Then we'll run tests and see exactly what her ailments are and what's going on. Then and only then will be write scripts. She needs ONE doctor. She needs ONE who will know what she's already on and what she truly needs. Sometimes when doctors in these retirement villages feel like "oh no!, here she comes again!" and they'll prescribe stuff to make the patient's visit short and sweet.

I was go glad that that happened. After she came out, her children got an apartment close to all of them and from then on she had quality care. At first they had a medical au pair come from another country and be a companion to her and a dispenser of medication.

That was two years before Nana fell and needed to be in the nursing home.


Old 02-16-2009, 03:45 PM   #4
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Re: Lewy Body Dementia

Hi Diane,
This is exactly what is going on with my grandma. Doctor after doctor keeps saying "let nature take its course"....they dont want to be bothered with a 95 year old.....
I believe they are trying a new pill, started yesterday and already she has been uncontrollably crying since yesterday. The rest of the meds, my uncle keeps in the cabinet, just to keep track of all the stuff they have "prescribed" and that has not worked at all.......we have yet to find a doctor who thinks of her as anything but an old woman who is in her last days.....very sad.

Love, Caroline xo

Old 02-16-2009, 05:58 PM   #5
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Re: Lewy Body Dementia

My mother was on several heart drugs, a drug to prevent acid reflux caused by the other meds, aspirin, and a blood pressure drug. Around 8 months before her death the doctor said blood tests showed no traces that any of the drugs had gotten into her blood stream - in other words they were passing through her digestive system unused. The same with food. When we were told that her meds were not working, we expected a heart attack.

Nothing like that happened. Her heart was fine. (Maybe she could have lived that long without the heart drugs; maybe she would not have had Dementia without them ...) She died of inability to thrive and a lung infection. Weight loss was the major symptom.

At 95 the body finds it harder and harder to make use of medications and even food. The body just stops 'processing them' as we get older. But it doesn't seem to happen to everyone; look at the rare person we see on TV sometimes who is 100 or even 110 and doing fine. I have an Aunt, Mom's little sister, who is 95 and doing fine except for being stone deaf. She lives alone, drives a car, goes for long walks, reads a lot.

I wish all the best for your dear Grandma. What a long drawn out nightmare.

God bless you, your Mom, Uncle and Grandma and your soon to be born new baby.



Last edited by Martha H; 02-16-2009 at 06:00 PM.

Old 02-16-2009, 11:00 PM   #6
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Re: Lewy Body Dementia

Caroline, concerning your question on how long it takes for a drug to be effective, that depends on the drug and what they call the half life of the drug. Some meds like Xanax and Ativan or a sleeping pill can work in 20 to 30 minutes but their effects are short lived. There are other drugs, especially psychotropic drugs with longer half life, that it could take up to a month to see the full effects. The new medication dad is on for his hallucinations, we were told 3 to 4 weeks to truly know the full effects.

If your grandmother cries anyway, just because she cried the day the meds were given doesn't mean that crying is a side effect of the drug or that the drug is not working. You can not determine if some meds are working after a pill or a day of pills. You uncle needs to ask the pharmacist how long it will take before the full effects are seen from the particular medication she was prescribed. Not knowing what it is but why it was given, it will probably take more than a few days.

Love, deb

Old 06-07-2009, 07:13 AM   #7
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Re: Lewy Body Dementia

I sure would like to find a doctor like that here in Alberta, Canada. I probably have taken my mom to 4 different hospitals and over 12 different doctors. Nothing seems to be helping. Dementia, old age, that's the way it is, accept it go home is about all I have heard for 3 years. One has said Lewy Body the rest follow that, and forget the dizziness, weakness, inability to walk at certain times, cold hands and legs sometimes the whole body is cold to touch. Also trouble speaking, halucinations are not common, tremors come and go,falls come and go. every 3 months like clock work she gets very sick, sometimes ends in the hospital for a week, they try to kick her out a number of times, they keep her, all this time the meds are not given as to confusion, and she gets better. 3 months later here we go again. If I cut out the meds she may die, other family members will blame me, the doctors should know best.

If I could find a doctor who cares, even in the USA, we would go. I like the idea of Detox and start over.

Old 06-08-2009, 01:30 AM   #8
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Re: Lewy Body Dementia

Dear lewybodyted,

I feel your pain and I wonder about your issues with the hospitals and doctores. In America it is also difficult to find good medical care. Many Doctores and people take advantage of Mecicare by having numerous well checkups and expensive tests. With Pres. Obama pushing socialized healthcare I wonder what is it like in Canada with Socialized Healthcare? It would be helpfull to discuss this someone who lives there and will speak honestly, not politically.

BTW, saying that our government doesn't run ANYTHING well is a gross understatement.

Your friend in Florida, Betsy

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