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 stages of Lewy Body 
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Joined: Mon Dec 31, 2012 7:28 pm
Posts: 10
Post stages of Lewy Body
Hello everyone,
My husband was recently diagnosed (October 2012), and the symptoms showed up all at once-or so it seemed. My question is: until we see the doctor for the next visit at 6 months, how do I know what stage he is in? The doctor said once we think about things, we or I will remember symptoms that began earlier. Any thoughts?


Sun Mar 17, 2013 7:57 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: stages of Lewy Body
Pam,
There really are no stages of LBD and the reason there isn't is because each person with LBD is so very different. Not sure what you are stages you are thinking of! I often say there is a beginning , a middle and end stage !

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Irene Selak


Sun Mar 17, 2013 9:27 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 694
Location: LA
Post Re: stages of Lewy Body
Pam, I suggest you get a notebook and begin writing as a Journal. Be as detailed as you have time for, entering the medications and his reaction to all. It will help you as you continue this journey but also you will be prepared with notes for your doctor visit. Don't be afraid to write the sweet thngs, as well as the unusual. You will be glad you did. Pen a poem, if you are turned that way.. tell of the things that calm him, a song n the radio, etc.

Dorthea

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"See this lady, she's 85, but she's nice"


Mon Mar 18, 2013 11:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: stages of Lewy Body
I agree that a journal is indispensable. I keep mine on the computer and I can search by words. It's been a Godsend for recalling medication information, etc.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 19, 2013 12:03 pm
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Joined: Mon Dec 31, 2012 7:28 pm
Posts: 10
Post Re: stages of Lewy Body
Thank you for the hints. I am not much of a journal writer, but keep everything already (meds, drs, appointments) in a binder. I am someone who needs to keep everything in order. Just trying to figure this all out-maybe that is not possible. Trying to keep the family in order since some are not handling this issue very well.


Tue Mar 19, 2013 5:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: stages of Lewy Body
Stages are difficult to define. Lewy does not progress the same way that Alzheimer's does but usually 'roller-coasters' up and down, with both physical and cognitive conditions fluctuating, although the overall state does deteriorate over time, sometimes rather sharply.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 19, 2013 6:14 pm
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Joined: Fri Mar 15, 2013 3:44 pm
Posts: 2
Post Re: stages of Lewy Body
This sight has good stuff on it!! Makes me understand more about my Grandmother. My momma & me were talking the other day about how we believe she had signs of LBD years ago. Just none of us picked up one it, or wanted to admit there was something wrong.


Wed Mar 20, 2013 1:05 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: stages of Lewy Body
bamaxchick,

I am glad you are finding the LBDA forums useful, there is a great deal of information here, sometimes when you can't find something just do a search for it and it will pull up many things having to do what you are searching for !

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Irene Selak


Wed Mar 20, 2013 3:21 pm
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Joined: Sun Mar 24, 2013 8:04 pm
Posts: 7
Post Re: stages of Lewy Body
My husband was newly dx'd he is 58. He had many symptoms and dr's. He had sleepiness all the time, shuffling his feet, paranoia,sleep apnea, REM sleep disorder, choking for no reason, inability to identify smells, inability to fix simple things and then like magic it would go away. Finaly was refered to neuro when he had hallucinations he was aware of. I searched for stages and now think there are symptoms but not really stages.
Symptoms come and go till they stay. I now think there are 3 states of lewy, functioning with variations, non-functioning needs 24hr supervision and bedridden in major decline. I wish you well.


Sun Mar 24, 2013 11:35 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: stages of Lewy Body
Stages are just too hard to define in LBD as each and every person that has it is a slight different, I think more people should concentrate on their own exceptance and worry less about stages because when we except and begin to understand the disease things seems to go a bit smoother. I know it did for me. Seems your husband is young too, mine was mid 50's when we started and back in the day it was really hard to get a Dementia of any kind DX. I think more Dr's are in tune with it today that they were ! This is a good thing as we can help them earlier than before ! By the way welcome to the LBDA forums, you will fine great infor here and much need support and comfort !

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Irene Selak


Mon Mar 25, 2013 9:06 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: stages of Lewy Body
I really understand your wanting to know about stages and see where your LO might fit in. That is just the nature of some of our personalities - some of us look at the past to help predict the future, we see patterns and relationships that others don't. Then there are people who are much more focused on the here and now and the facts in front of them. Being of the former type myself, I can imagine why you'd like to know about "stages".

There used to be a list of symptoms on this forum that was roughly arranged in several stages, and was written by a group of CGs, I believe from another forum. I made a copy of this and saved it "somewhere". If I can find it, I'll send it to you via PM as the people who wrote it had some issue with it being published. It is only "somewhat" helpful, because, as so many people on here have said, symptoms differ from person to person and some people experience them in different sequences, and they come and go. That said, I still found that list helpful.

From my own non-scientific observation, and discussions with other CGs, here's what I'd say if I were going to list "stages of LBD":

1. Person can perform all or most ADLs (dressing, feeding, toileting, is mobile, etc.)
2. Person has difficulty with about 50% of ADLs, is becoming immobile & incontinent
3. Person is totally dependent on CGs, is immobile, cannot transfer, totally incontinent
4. Person starts withdrawing from the outside world, is very inward-focused, sleeps the majority of the time, cuts down food and drink consumption drastically

I've heard it said that people with LBD usually don't live beyond 7 yr. "after diagnosis." So, when the person is diagnosed obviously effects the longevity issue BIG TIME. One of my biggest reasons for wanting to try to understand the stages was a financial reason, and that is a HUGE reason many of us try to wrap our heads around "how much longer might my LO have?" There is an ALF near my house where I would love for my dad to have been, but it was twice as expensive as other alternatives. To get him here was going to cost about $12,000, monthly expenses were over $10,000 a month and as he declined they'd increase. So, it was important for me to understand if he had enough money to cover various alternatives. Keeping him in his house with CGs would have been even more expensive as he was a 2 person assist within weeks of my being told he had Parkinson's, and he needed 24/7 care. Unless a person has unlimited resources, for that reason alone it's a big issue in trying to figure out how to plan for our LO's care.

Enough! Come back often, and have a good evening. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Mar 25, 2013 7:42 pm
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Joined: Mon Dec 31, 2012 7:28 pm
Posts: 10
Post Re: stages of Lewy Body
Thank you for your comments and support!


Fri Apr 19, 2013 9:01 pm
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