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  1. #1
    abexman's Avatar
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    Lewy Body Dementia & acetylcholinesterase inhibitors/anti-cholinesterase...

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    So my mother was recently diagnosed with Lewy Body Disease, which seems to be the same as Lewy Body Dementia. This is not square one though since she has previously been diagnosed with Parkinsons. Has anyone done any study on Lewy Body?

    From what I read Lewy Body is one segment within the larger umbrella of dementia, the other larger segment being Alzheimers. The relationship between Parkinsons and Lewy Body is unclear or not understood well by science, though they may be related. Their treatment can have some overlap but I guess folks with Lewy Body sometimes don't have success with the same drugs Parkinsons patients have.

    For Lewy Body Aricept or the Exelon patch are usually prescribed, both known as these type of drugs:
    An acetylcholinesterase inhibitor (often abbreviated AChEI) or anti-cholinesterase is a chemical that inhibits the acetylcholinesterase enzyme from breaking down acetylcholine, thereby increasing both the level and duration of action of the neurotransmitter acetylcholine. Reversible, quasi-irreversible (or pseudirreversible in some sources) and irreversible inhibitors exist.[1]
    https://en.wikipedia.org/wiki/Acetyl...rase_inhibitor

    My mother's dementia is not that bad. I have tried to encourage her to move to a more paleo-like diet. However with a bit of googling around forums on Aricept and Exelon I have found many patients complaining that some Lewy Body symptoms like hallucinations actually increased permanently (meaning later dosage decrease does not return to pre-drug condition) after going on these meds! That is a big scare for me since my mother does not currently have significant hallucinations. On the other hand I hear some patients say things like "it's important to get on the drugs early in the life of dementia to slow down the disease progression." Any thoughts?

  2. #2
    Lewis's Avatar
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    Quote Originally Posted by abexman View Post
    Any thoughts?
    Nothing that's very well-informed. I'll try as far as I can.

    Have you read Awakenings?

    Awakenings: Oliver W. Sacks: 9780330523677: Amazon.com: Books

    For me that's one of the most remarkable books of the 20th century.

    What that says to me is that there are no magic bullets. The new wonder-drug had effects to be sure, and pretty remarkable ones; but it didn't solve the problem of the sleeping sickness permanently. I strongly suspect that's generalizable. I think pharmaceuticals are the god that failed -- yeah, some are useful at some times for some purposes, but you can't put it any higher than that, and the people who're selling them are banking on the rest of us not realizing that.

    I think paleo diets are probably a little over-sold, but I also doubt they've ever done anyone any harm, and I think a diet of that general sort -- probably doesn't have to be exactly that -- can fix a lot of things. If you can get someone to follow that without distressing them, then well and good.

    Again, I'd like to point to Awakenings: the patients that did best with the medications and other care that Sacks and the nuns could provide were those who also had good social support (awful abstract way to put it). That seems to be incalculable but massive. If your mother's got you to care about her, that's as important as anything.

  3. #3
    Fantazmic's Avatar
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    Hi

    My Mum has Lewy Body Dementia and she had a very unusual onset which meant the Doctors didnt pick it up until the symptoms were very obvious. My Mums main symptoms came on after a fall where she hit her head and she literally woke up with bi polar. So she was diagnosed with that first before the Lew Body Dementia became obvious.

    Something I will say to you is that the disease progression is very cruel and very individual. My mother had quite an early onset ( early 60's) and I was told, once she was diagnosed late 60's, that she would most likely have a very rapid progression of the illness. She is now 79 and bedridden and it has been a long hard and distressing haul which we are still trying to help my Mum cope with. My Mums symtoms are both physical and mental although she still knows who we all are she is unable to even read a newspaper or follow anything on the tv as it is all now too complicated or fast moving for her. She cannot do a thing for herself and because of her strictures she cannot even scratch her own face.

    We did try Aricept and she had convulsions and so had to stop.

    I guess what I am trying to say in telling you about my Mum is that every moment your Mum has where she is able to account for herself, and do things for herself is precious. Once the disease symtoms have shown themselves from my experience there is very little that can be done. You just have to go with it and cope as best you can.

    So.....encourage her to enjoy every moment....if she wants to eat rubbish food and have fun doing things you wouldn't recommend to prolong her life...let her. Honestly she may be in for a very unpleasant time of it later on and so really every moment of independence she has now is precious.

    Take care and my best regards to you and your Mum at such a difficult time.

  4. #4
    abexman's Avatar
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    Quote Originally Posted by Fantazmic View Post
    Hi

    My Mum has Lewy Body Dementia and she had a very unusual onset which meant the Doctors didnt pick it up until the symptoms were very obvious. My Mums main symptoms came on after a fall where she hit her head and she literally woke up with bi polar. So she was diagnosed with that first before the Lew Body Dementia became obvious.

    Something I will say to you is that the disease progression is very cruel and very individual. My mother had quite an early onset ( early 60's) and I was told, once she was diagnosed late 60's, that she would most likely have a very rapid progression of the illness. She is now 79 and bedridden and it has been a long hard and distressing haul which we are still trying to help my Mum cope with. My Mums symtoms are both physical and mental although she still knows who we all are she is unable to even read a newspaper or follow anything on the tv as it is all now too complicated or fast moving for her. She cannot do a thing for herself and because of her strictures she cannot even scratch her own face.

    We did try Aricept and she had convulsions and so had to stop.

    I guess what I am trying to say in telling you about my Mum is that every moment your Mum has where she is able to account for herself, and do things for herself is precious. Once the disease symtoms have shown themselves from my experience there is very little that can be done. You just have to go with it and cope as best you can.

    So.....encourage her to enjoy every moment....if she wants to eat rubbish food and have fun doing things you wouldn't recommend to prolong her life...let her. Honestly she may be in for a very unpleasant time of it later on and so really every moment of independence she has now is precious.

    Take care and my best regards to you and your Mum at such a difficult time.
    I can understand that perspective. However if my mom is willing (this is key), I wonder if there may be ways to prolong her healthy life. I have read enough about connections between Parkinsons/dopamine/blood sugar, Resless Legs Syndrome (my mom has these sympt & inflammation induced from blood sugar/gluten and connections between Alzheimers and diabetes - that make me thing that diet can make a difference, as much as conventional doctordom might not think.

    To boot:
    The Restless Legs Blog (or how I tried to convince Big Pharma that my legs are better)

    How to prevent spending the last 10 years of your life in a diaper and a wheelchair

  5. #5
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    I took care of my Dad until he passed away recently. He had vascular dementia (a series of small strokes) as opposed to LBD but the presentation is very similar.

    The things that I found to be helpful in caring for him were cutting out all sugar (other than the occasional berries) and keeping meals on a regular schedule. This seemed to even out blood sugar swings. (My father was also diabetic, and yes, there is a connection, I'm sure of it.)

    I don't know if your mom is displaying "sundowning" symptoms or not where the clarity is much better in the a.m. and starts to slide off the edge toward afternoon/evening but it seems to be common to most dementia cases. Keeping the blood sugar stabilized seemed to help even out this a.m./p.m. swing. Sometimes Dad was perfectly normal, like his old self, in the a.m. and by dinnertime he didn't know who I was and was seeing tigers in the back yard.

    My heart goes out to you and your mom. You do not have an easy time ahead of you. She is very lucky to have you fighting for her.

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