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 Stages of Lewy Bodies 
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Joined: Tue Aug 12, 2008 9:54 pm
Posts: 4
Location: San Antonio, Texas
Post Stages of Lewy Bodies
This is a question regarding stages of Lewy Bodies.

Does anyone know what stage of the disease has aggressive behavior, violence, and hallucinations?

I am trying to determine what the next phase might be. If there are various stages that have been identified, it would make sense to try to plan for the next stage.

We have definitely gone to a new level of the disease. My sweet, kind, non-confrontational husband is now an aggressive, violent man while he is hallucinating.

Does anyone know what might help at this stage?

Does anyone know what to expect next?

Thank you.


Sun Feb 15, 2009 12:13 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Detective work for you
Sure wish I could answer the question about stage. I can't but I can tell you that if he is aggressive something is probably bothering him [physically maybe]. and he is trying to let someone know in the only way he can. Is he constipated? Urinary infection {UTI] Restless legs syndrome? Overly tired? Too cold? Too warm? Dry skin? Thirsty? And on and on and on. Hungry? Its not easy and we have no patterns to go by. Each and every Loved One seems to be different. We do have guide lines and the aggressiveness seems to go along with discomfort or maybe a medicine is not agreeing with him. Sorry I can't be of more help, maybe someone else can offer a suggestion. I keep frozen fruit bars on a stick for times like this... or a frozen chocolate bar. It takes his mind of the problem as well as giving him a little liquid.

If the hallucinations are frightening enough to cause aggressiveness then I do hope for him as well as you that you can bring that behavior under control... That is so sad.

Good luck.

Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Sun Feb 15, 2009 12:48 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Colleen,
Have you discussed this aggressive behavior with your husband's MD? I would do so right away. Keep a log as to what was going on that may've triggered the behavior and what time of day it is. Hopefully this can be treated either by identifying its cause (see Dorthea's post about infection) or by medication.
Good luck,
Robin


Sun Feb 15, 2009 3:36 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Dots, indeed!
What an interesting way to chart the progression. You learned so much for us, didn't you, MM? I do not have dots and might not be able to go by memory but I do have every email I sent to my children concerning their father. It is recorded. Also, I have recently been envolved in arrangements for post mortem brain donation, thanks to Robin for her pointing out the importance as part of our caregiving. Part of the planning is asking the doctors who have cared for Mr B. to send records pertaining to this illness to Mayo Clinic Jax as evidence of the declining years. The neurologist report was for one visit only and he sent it immediately, I have not heard from the geriactric psychiatrist but I'm hoping he just sent the records [as I requested] without notifying me [I will find out about him later]. Our long time primary care physician, Dr. W., told me with a grin, "We're working on it". I feel from his attitude that he is also interested in a positive diagnosis. I expect his right hand man, Jennifer, is burning midnight oil to do this research from twenty-five years.

The question of stages plagues us as we go about the caregiving duties. There is little we can offer our fellow workers, however, we can do as MM as suggested and try to come up with a timeline. We are the first generation to begin working on this and we can leave our mark as we go about doing what is best for our LOs; prolonging their life and comfort by observing , keeping records, charting, and making arrangements for post mortem brain donations. Future generations will thank us for spearheading this research as we walk through the natural progression with our families. We can be proud that we have done everything possible for others in the future as well as our own satisfaction and especially the loved one in our care.

DrP

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Sun Apr 05, 2009 2:00 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Makes sense
MM, it must be that way: Post mortem to be "gratis". When you think about it, if "they" start charging either private or insurance, think of the chances for "hanky-panky". Therefore we need to find research labs who are existing on grants and/or teaching and work with them. It can be done with diligence and determination as we follow the dots and give loving care!

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Sun Apr 05, 2009 4:08 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
Colleen,

I too wish there were a "stage" or "progression" we could follow. Just when you think you have it...oops...another wrench is thrown in the pile of jumble.
My LO also had some very aggressive bouts at times...that was a while ago...lately it is more verbal abuse than anything...and that comes and goes too. Just never know what will happen on a day to day basis. Today he told me how I do not take good care of him, am mean, demeaning. It hurts to the core, especially when I have no life anymore...I spend all of my time trying to care for him in the best way possible...with kindness, tlc and dignity. I guess the unappreciation is what hurts the most...but then you have to consider the source. Hard to do but its a fact. He even told the neighbor I am mean. She knows better but it hurts to know he tells folks this.
Today he called me from the dressing room...here sat his shower chair covered in poo...with the commode only 2 feet away!!! I was so dismayed...not used to cleaning that kind of a mess. Incontinence is one thing but this was a horrible, huge mess. He got very angry that I was upset and told me how terrible I was to him. Believe me, I bit my lip really hard to keep my mouth shut...listening to these comments while cleaning up that terrible mess. Can't win for loosing.
MMs idea about dot connecting is a really good one. I am going to try that. Its like a roller coaster here...ups and downs ...never know what the day will bring.
If your LO is getting physical you need to report it to the dr. immediately as that is something that could be dangerous to you. There is an article that was posted here by a Geri Hall relative to physical abuse. Please read it. It changed my mind about a few things.

Wishing you all of the luck possible. Prayer for you and all caregivers tonight.

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Dianne C.


Tue Apr 14, 2009 11:23 pm
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Location: Henderson, Nv.
Post 
Your Mother was SO right! :) Same here...fastidious, borderline fanatical about cleanliness, dress, etc....reduced to this. I do what I can ...as best as I can...but this was way beyond my realm...or my world of "thunking."

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Dianne C.


Wed Apr 15, 2009 10:59 am
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Location: Henderson, Nv.
Post 
neuroguy

Thanks so much for posting the possible phases. It truly helps as a suggestive guideline for what may come in the near future. It aids us in preparing both mentally and physically. Our greatest fear is the fear of the unknown.
Thanks again.

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Dianne C.


Sat May 02, 2009 1:40 am
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Joined: Thu Jun 18, 2009 4:45 pm
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Post 
Thank you for posting about the possible phases of LBD. I have been searching for something like this since my fathers diagnoses. I too need something to prepare myself for the future. Knowledge is power as they say. Going about this blindly is more frightening than knowing what can be in store for us.
My brother keeps asking me what is coming next and I haven't had a clue. Thanks again for shedding some light on this subject.

Cathy


Mon Jun 29, 2009 12:31 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post 
Deborah -

Welcome to the Forum.

I sent you a private message yesterday. Do you know how to check those?

Could you please edit your post? You don't need to quote the entire post that you are replying to! Just say "dear neuroguy...." and everyone will know which post in the string you are referring to!

Thanks,
Robin


Tue Dec 15, 2009 5:40 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Stages
dear neuro guy,

I just joined the conversation and want to thank you so much for the easy to follow information.

I've done a lot of Internet based research to help me with taking care of my mother, a dementia patient. So I've read a good amount of information about the stages of dementia. What I've learned is that not all symptoms show up within the predictable stage and that one should not expect such information to be a checklist to define a specific stage.

I would strongly recommend, though, that anyone who has a reputable memory clinic available to them make an appointment with a memory specialist. I just took my mother to the one at the University of Minnesota and even the first visit was profoundly helpful. Mom is scheduled for more tests, but the doctor is pretty sure it is LBD and has identified that she is in the mid to advanced stage.

Don't try to diagnose your family member's stage without the help of a professional - at least not if professional help is available. The clinic we visited works with Medicare and my mother's supplemental insurance. Even if we end up paying a portion of the cost, it is worth it.

Do it. You'll be glad you did.

_________________
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]


Tue Dec 29, 2009 5:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post 
More of a rhetorical question.... I've never been sure of the value of knowing what stage your loved one is in, except for knowing you are in the final stage is helpful to know because you can get the assistance of hospice. But, otherwise, what is the value of knowing the stage? Survival time doesn't correlate to the stage.


Tue Dec 29, 2009 6:26 pm
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Joined: Fri Jun 26, 2009 9:39 pm
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Post 
Thanks, Robin, for that piece of info. I, too, have wondered about the duration of a specific stage. We went from being able to do everything to doing nothing within just a few months. From tennis and driving and just about everything a normal person does to doing nothing, except walking, and that just sporadically. Some days even standing upright is nearly impossible. He is incontinent, fights medicines, doesn't want to eat a lot of the time, certainly does not drink enough, resists getting dressed or undressed or being changed, has been through the hallucinations, Capgras, delusions, and a lot of the time doesn't even seem to understand what I'm saying or asking him to do. It was a precipitous drop, nothing gradual. Not a whole lot of change in the last year except he just seems weaker. The meds have certainly stabilized him, but not improved his mind.
Judy


Tue Dec 29, 2009 9:53 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post 
Judy,
I'm sure you are grateful for the stabilization. Sometimes "no change" is the best we can hope for.
Robin


Tue Dec 29, 2009 10:01 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post The value of knowing
robin,

The value of understanding the stages of dementia, of any kind, is that it helps you to know where you are and what types of symptoms to be ready for - perhaps even to prepare and learn coping mechanisms to help your LO. It's not a matter of knowing how much time you have left. It is more a matter of making the best of the time you have now.


Wed Dec 30, 2009 1:31 am
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