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 Stages? 
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Joined: Tue Jun 12, 2012 10:22 pm
Posts: 9
Location: Northern California
Post Stages?
What are the stages of LBD and how do I know which stage my husband is in?
I guess the doctor would tell us what stage he is in, but since the diagnosis Marc has been in 2 SNFs, with a couple days at home in between, so I haven't been able to get him to an outpatient appt.
The neurologist who diagnosed him with LBD (Dr. K) doesn't want to see him as an outpatient, he wants his partner (Dr. C) to see Marc since Dr. C. saw Marc before as an outpatient. But I dont like Dr. C as much - he is OK, but missed the early signs of LBD last year.
Advice?

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Cherie, CG to husband (81) with LBD


Sat Jul 14, 2012 8:06 pm
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Location: WA
Post Re: Stages?
As far as I know there is no formal list of LBD stages, such as there is for Alzheimer's. And, unlike AD, LBD can move from one 'stage' to the next, then back again [temporarily]. It is my understanding that, in Alzheimer's, once they've lost ground, it's lost for good. Again, the overall decline in LBD is certain but it is not necessarily linear.

My husband is in a fairly 'late' stage, in that he cannot walk, scarcely talk [and not more than one or two words], is completely delusional and totally incontinent. Without high doses of Sinemet, he would be unable to swallow but, thankfully, he can still eat [he needs to be fed]. But all Lewys are different, both in their symptoms and in the course of the disease. The effects on different parts of the brain make a big difference in behavior, debility, etc.

As I mentioned in an earlier post, the challenge is to optimize their well-being at every 'stage' with good medical care, healthy diet and exercise as much as can be tolerated and lots of emotional support. [I believe spiritual support is very important, too!].

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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.


Sat Jul 14, 2012 8:22 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Stages?
The question about stages is a common one, I think because it is connected to the natural desire to know what to expect. It's unfortunate that there is not one size that fits all, no one series of steps that every LO takes in exactly the same order, and nothing really predictable about this disease except that deterioration eventually occurs and cannot be prevented or cured.

Julianne


Sun Jul 15, 2012 9:42 am
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Location: Delaware
Post Re: Stages?
Talk about stages....my husband has always been a sleeper, but now he is only awake an hour or two a day. He cannot talk but he can still feed himself finger foods if he can stay awake long enough. I don't know if he knows who I am because he cannot talk. He went from talking, participating in conversations, getting dressed and eating to his current stage in 7 days. My concern: is this getting to the end? I don't know. He is a wonderful man and the light of my life. Ron is 69 and we have been married for 43 years. He has had LBD for about 6 years.

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Katie, married to the love of my life on June 14, 1969.


Sun Jul 15, 2012 8:51 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Stages?
Katie,
Your husband is getting to the latter stages if he is sleeping that much but no one can really say how long he could remain like this , now when you say it all happened in 7 days that kind of makes me think it is something else going on such as a UTI, Lewy really doesn't progress like that.

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Irene Selak


Sun Jul 15, 2012 9:34 pm
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Location: WA
Post Re: Stages?
I agree, Irene. Derek has his ups and downs but deteriorating that much in only a week sounds more like either an infection or some medication issue. OTOH, I have spoken with people whose LOs seemed to go that quickly. With Lewy, you never know.

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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.


Sun Jul 15, 2012 9:42 pm
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Stages?
Irene, Ron is currently in the hospital. They have been monitoring him. He shows no signs of infection. He has had UTI's before and doesn't seem to be the same. I kind of think it is coming up to the end. He seems different this time.

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Katie, married to the love of my life on June 14, 1969.


Mon Jul 16, 2012 12:05 am
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Joined: Tue Jun 12, 2012 10:22 pm
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Location: Northern California
Post Re: Stages?
Thank you for the information. I have had so many friends and family say, But it happened so fast!

I saw Marc doing his PT today and he is much stronger then two weeks ago, so I am hopeful that he can come home in a week or two .

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Cherie, CG to husband (81) with LBD


Mon Jul 16, 2012 12:30 am
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Joined: Fri Jul 29, 2011 1:22 am
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Location: Delaware
Post Re: Stages?
Cherie, I am thrilled that your husband is doing better. Looking forward to see the post that says he is home!

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Katie, married to the love of my life on June 14, 1969.


Mon Jul 16, 2012 8:48 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Stages?
Katie,
Could be then this is residual of the recent infection and the new normal. I found everytime my husband in the last yr went through something such as infection , falls , fractures it really brough his new normal to a lower place than it was before and he never returned to the previous, he would get better from sat the infection but never really back to baseline !

Good Luck !

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Irene Selak


Mon Jul 16, 2012 9:24 am
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Post Re: Stages?
Cheri,
I am glad Marc seems to be doing better and you are hopefully of bring him home again,
What a difference a day makes !

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Irene Selak


Mon Jul 16, 2012 9:26 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Stages?
Cherie,

About stages. In my research when Mom was first diagnosed, there are at least 6, more like a dozen, scales for the stages of cognitive degeneration (though not specifically LBD). It is important to ask your doctor what scale he/she is using and then work from that. If you change doctors, ask the new doctor about the scale being used. None of them is exact an it is common to exhibit some traits from multiple stages at the same time. Scales are not roadmaps, just advisories of road hazards and detours you might run into. For me, that was helpful. But I know it is not helpful for everyone.

Mom's doctor used an adaptation of the Allen Scale. This was originally developed as a cognitive generation scale for the study of child development. But it is also valuable for cognitive degeneration found in various forms of dementia. But, though Mom's doctor used the scale in diagnosis, he usually spoke in early, mid and late stages (and degrees of those) when talking with us. Being the control freak I am, though, I needed to learn as much as I could about all of this and found a good book, provided you use it as a guide rather than an absolute. It's called Caregivers: Drowning in a Sea of Cognitive Challenge by Delaune Pollard. In the center of the book is a very detailed adaptation of the Allen Scale. But what I found most helpful was that it likened the various stages (and levels) to the ages of children and their cognitive development. Again, it wasn't exact. Mom usually exhibited traits found in multiple stages. But it helped me understand her situation and how to work with her. I still recommend the book.

Good luck.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Last edited by katelu on Mon Jul 16, 2012 11:07 am, edited 1 time in total.



Mon Jul 16, 2012 10:42 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Stages?
""he usually spoke in early, mid and late stages (and degrees of those)""
Kate,
Several Years ago the caringspouse support group came up with a very un-scientific "stages" of LBD observed from many spouses and that is correct your LO can be in several of thoses "stages" at once. When I need to be in contact with a brand new caregiver as I am so often with my work for the LBDA assoc, I often will say bwhen this qiestion is asked "There are no stages but I think there is a beginning, a middle and an end ! So I found this interesting !

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Irene Selak


Mon Jul 16, 2012 10:53 am
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Post Re: Stages?
As unscientific as it may be, the caringspouses offering is one of the best I ran into. The numbers go in the opposite direction to what is used in the Allen Scale. It is one of the reasons I strongly suggest that caregivers ask the doctor what scale is being used and, if possible, for a copy of that scale. But I took my queue from Mom's doctor and usually spoke in generalities, too. And, BTW, I am so glad I took her to a memory clinic, rather than accepting a simple "dementia" diagnosis. The support offered by the specialized clinic made a huge difference.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 16, 2012 11:17 am
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Post Re: Stages?
Derek's neurologist does not think any current scale is applicable to LBD but I'm sure researchers need to use some kind of quantitative measurements.

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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.


Mon Jul 16, 2012 11:28 am
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