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 Looking for suggestions 
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Joined: Fri Jun 22, 2007 9:43 pm
Posts: 28
Location: Derry, NH
Post Looking for suggestions
Hi all -

This is my first post to the forum but from everything I've read, there is a lot of good information here.

Mom was just diagnosed with LBD about 4 weeks ago. This was after a long while (years) of us noticing memory issues, followed by her seeing things that weren't there and then, more recently, her not knowing who my dad is. The neurologist put her on Exelon but we're not really sure if it's done anything for her because we're not exactly sure what it should be doing. She goes back next week for a check-in but since her last visit, even though she's been given medication, we've seen a decline in her. She constantly thinks my dad is leaving her alone (especially at night) even though he's there with her (she always thinks he's someone else from a stranger to a deceased relative). And then when she knows who he is, she accuses of him of leaving her and crying asking him why doesn't he love her anymore because he leaves her all the time even though he knows how scared she is to be alone. This has now evolved into her getting very nasty to him (including yelling at him) whether at home or in public. Dad is extremely frustrated. My sister has been helping them out as much as possible as she lives the closest to them. I try helping via my sister because I live 2 1/2 hours away from them. I could go on and on but we are really just looking for suggestions on how best to help her when we know she can't understand when we tell her that dad has never left, that he's always there. She now thinks the family is "ganging up" on her and siding with him all the time and that we've abandoned her.

My dad has been reluctant to allow in outside help for respite (from elder services) though they have an appointment tomorrow to see what services they may be eligible for. My mom calls my sister all day long to ask where dad is. (Mom still lives at home with dad)

We are looking for any suggestions on how to handle a) helping my mom understand as best as possible that she's safe and b) convincing my dad to accept the help of "outsiders" so he can get some relief.

Any thoughts will be appreciated. :)


Thu Jul 12, 2007 7:18 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Salemst:

The Exelon should improve thinking in general - the thing is, the effects of Exelon monotherapy can be pretty subtle - it's more a question of keeping things from getting worse, and being a little more "involved" than without it.

The delusions and agitation are sometimes improved by drugs like Exelon, but usually it requires a second class of drug. There is substantial debate as to the "best" option for that second drug.

In North America, most DLB patients with these symptoms are treated with low doses of what are called "atypical antipsychotics". There are a variety of them on the market - they're more alike than different in efficacy and safety. . . they tend to work, at the risk of sedation and weight gain/diabetes, the latter in higher doses.

The second option (and it's really not either-or, some people use both, like our LO with DLB, Cal) is a class of drugs called psychostimulants. The hypothesis is that these delusions are caused by intrusions of dreaming into the wakeful state - keep the patient a little more awake, things get better. One of the leading experts in DLB treatment uses this class extensively with his patients.

The delusions make caregivers crazy - in our case, they were quite resistant to the antipsychotics, and they got progressively more problematic in the months before the diagnosis. I'd encourage you to search here for "modafinil" or "Provigil" or "psychostimulants" using the search button at the top of each page for more about how much of a fan we've become of these agents in our LO.

On the LBDA site, there's a great paper,

http://www.lewybodydementia.org/docs/DL ... nuum04.pdf

- it illustrates a number of great management strategies for DLB - if you find a clinician experienced in such comprehensive management, you'll have a very different experience with this disease than if you don't.

None of this is acutely fatal - it's all just crazymaking for family members and other loved ones, so there's time to find what works. A good thing to keep in mind is that DLB brains are very sensitive to some medications, so it's generally a good idea to start with the smallest possible dose and make dose changes slower than one normally would.

Ask us anything, we're here to help.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Fri Jul 13, 2007 2:15 am
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Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
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EricSEA wrote:
Ask us anything, we're here to help.

Eric


Another added complication of Mum's is osteoporosis and she takes Calcius chews x2 at night. I don't have a scientific mind but seem to recall from some posts that calcium reaching the brain in large doses quickly can be problematic in DLB - is this the case or am I on completely the wrong track? :?

Found it...this is in Eric's explaination for Namenda...

The secondary effect of memantine is that it may prevent glutamine-induced neurotoxicity. If there are high levels of NMDA, glutamate or other chemicals around the cell, it makes the cell susceptible from death from calcium entering the cell both too rapidly and in too high of concentration. Memantine is believed to reduce that mechanism of cell death.


Fri Jul 13, 2007 5:36 am
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Joined: Wed May 30, 2007 12:09 pm
Posts: 114
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dawnfarrugia wrote

Quote:
it makes the cell susceptible from death from calcium entering the cell both too rapidly and in too high of concentration. Memantine is believed to reduce that mechanism of cell death.



I would be interested in knowing the answer about calcium also. Mother has osteoporosis plus paget's disease and takes Fosomax and calcium for it.

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Fri Jul 13, 2007 1:16 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Eeep!

Serum calcium in the blood and excitotoxicity from calcium are com*pletely* different things - calcium is good and life-sustaining and beneficial, and Cal takes a calcium supplement every day. Don't stop - osteoporosis is a leading cause of morbidity and mortality in the elderly. It's also worth asking the doctor if a Vitamin D level test is in order - most elderly people don't get enough sun exposure to make a healthy level of Vitamin D, and the level in most supplements is completely inadequate in light of the newer research.

Calcium can't cross the blood-brain barrier without a transporter, and it can't enter the cells in toxic quantity without a serious level imbalance and a malfunctioning receptor. There's absolutely nothing to worry about with dietary calcium.

There is evidence that sufficient magnesium levels can mitigate the toxic effects of too much calcium entering brain cells. Depending on your level of trust in woo-woo, you might want to get your LO a magnesium level check and supplement as needed. I happen to think that the best magnesium supplement is magnesium glycinate, AKA magnesium amino acid chelate, with no added magnesium oxide, magnesium malate, or other magnesium salts. Magnesium taurate is also well-absorbed and tolerated.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Jul 14, 2007 4:44 am
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Joined: Wed May 30, 2007 12:09 pm
Posts: 114
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Thank you Eric. You always come through for us :)

Boy what a relief it is!!!!!! :D

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#1daughter

Caregiver to 84yr. mother w/LBD & 83yr. dad w/PD


Sat Jul 14, 2007 11:01 pm
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Joined: Thu Jun 28, 2007 12:32 pm
Posts: 9
Location: Knoxville, TN
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Salest,

So sorry to hear about you mother, but I am glad you have found this place...You are right, there are a lot of good info that can be found here along with heartwarming and heartfelt stories. I understand about hallucimations and paranoia. My mother has both very severely. I don't really have any suggestions, as I am pretty new to this myself. But I do want to let you know that you and your family are not alone. There are a lot of advice and info that some of these wonderful people here have to share. Make sure that your dad gets time away from caregiving. It will burn you out quick. Someone told me to try the local Alzeheimers association where your family is located. I will try to get some more resources for you. I know how hard it is. Please hang in there, both you and your family.

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-Christy
Thanks for listening!
If you need a friend, please don't hesitate to write.


Sun Jul 15, 2007 4:30 pm
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Joined: Fri Jun 22, 2007 9:43 pm
Posts: 28
Location: Derry, NH
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Thanks for all your great responses. While this is one of the saddest diseases, it's nice to know that others can provide kind words to help us through it.


Sun Jul 15, 2007 8:27 pm
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Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
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Not been around all weekend, but thanks so much Eric...Like #1 daughter says, you always come through for us.

I've been talking with my SIL regarding magnesium supplements, will definitely check this out further.

Again, many thanks
~Dawn


Mon Jul 16, 2007 4:46 am
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