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 Memantine/Namenda Survey 

Does your LBD loved one take Namenda?
Yes, and it made a big difference. 34%  34%  [ 44 ]
Yes, but it didn't make much of a difference 17%  17%  [ 22 ]
Tried it, and had problems so we discontinued using it. 9%  9%  [ 11 ]
No, never used it. 40%  40%  [ 51 ]
Total votes : 128

 Memantine/Namenda Survey 
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Joined: Mon Jun 05, 2006 3:29 pm
Posts: 93
Location: State College, PA
Post Memantine/Namenda Survey
My dad has been on Aricept for 4 years, but it only gave him mildly improved cognition for about six months. It would be impossible to say what further decline it held off, but I strongly suspect he would have declined faster without it.

Last year he really started struggling with increased confusion, so his doctor put him on Namenda. I was pretty wary about using it, because there just isn't much research available about Namenda and LBD. But it made quite an improvement for my dad for over a year now, though the confusion is beginning to return to where he was before he began the Namenda. (I had read the pharmaceutical company's literature on Alzheimers and Namenda, so I expected the improvement to be more short-lived. I am extremely grateful for the good year we've had.)

Can anyone else share their experiences with Namenda and LBD? :?:

Thanks,
Angela


Last edited by jaektaylor on Mon Feb 12, 2007 9:18 pm, edited 1 time in total.



Thu Jun 29, 2006 7:26 am
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Joined: Thu Jul 13, 2006 10:45 pm
Posts: 1
Location: Florida
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My husband has been on aricept and namenda for 2-3 years. At different times I would ease him off to see what happens. His confusion and memory problems escalated so I concluded it is helping. When I put him back on, it was as if I "rebooted" his brain and we were back with the good results of when he first began. No doubt it wears off but i t apparently does something given the noticeable changes when he's off. Frankly I didn't want to waste money on it but the good does outweigh the expense.

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Dee


Thu Jul 13, 2006 10:51 pm
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Joined: Sun Jun 25, 2006 11:16 pm
Posts: 30
Location: Beverly, WV USA
Post Big difference
When I forget to give Harry his Namenda. I've also learned to give last dose no later than 4/4:30 PM, to get benefits of alertness before bedtime needs to arrive.

The cost is so ridiculous! $166.00 for a month's supply here in WV. My VA doesn't offer it until the very final stages of dementia. I don't even ask "why".........it's the VA.
Sue & Harry in WV


Sun Jul 23, 2006 3:43 pm
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Joined: Wed Aug 02, 2006 2:54 am
Posts: 3
Location: Victoria BC Canada
Post 
Mom has been on aricept for 3 years and memantine for about 6 months we have recently cut the aricept back and found that it is no longer making as great a difference as when she first went on it. Those first 6 or 8 months were such a boon as we felt we had mom back. She has become much more difficult to deal with in the last 2 months having lost her ability to feed herself, her anger at needing to be fed is very hard to deal with. I work as a nurse aid on the ward where mom is living and while most of my time is spent with other patients I hear and see moms outbursts at meal times.

Every one askes if it is hard to work with my own mother but I can say that it would be harder to NOT be there. Some times she comes out with memories of the past that none of us in the family think were special or noticed by our parents that touched her in some special way and for that knowledge I will always be greatfull for this time with mom.

I find it harder to think that mom is only 84 and is so close to the end of her life while others are still going strong at 100+ and that she always wanted to outlive her grandfather who died at 101. From all I have read she seems to have so little chance to make it.

Jack


Wed Aug 02, 2006 3:31 am
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Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
Post 
Namenda can be gotten from the pharmacuetical company at no cost for those on limited income.
Jennifer


Thu Feb 15, 2007 2:48 pm
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Joined: Wed Aug 02, 2006 2:54 am
Posts: 3
Location: Victoria BC Canada
Post Namenda and Aricept
Just to up date things mom passed away on October the 18th 2006. She made a decision on thanksgiving weekend that she was not going to eat or drink anymore and none of the family or care workers could change her mind.

In response to the comments about the ability to get medications for those on low income not all meds are covered by those regulations. Here in Canada the medical community is still arguing over the effectiveness of Namenda and Aricept so they are not covered by pharmicare unless the family and geriatric doctors will both write notes to the pharamacare branch. Many GP's will not do this unless the family really applies pressure and pharamacare has been known to be very stubborn in accepting these letters.

These pharmacare boards are independent in each province and that can also cause issues.


Thu Feb 15, 2007 8:16 pm
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Dear Jackmac,
I would like to extend my condolences in the loss of your Mother, to you and your family! :cry:


Thu Feb 15, 2007 8:28 pm

Joined: Tue Dec 19, 2006 4:38 pm
Posts: 12
Location: Evanston, IL
Post 
Another Namenda success story . . . at least the first two weeks of it! Dad was discharged from his first nursing home on 2/5/07 and we finally got him moved into the new one on 2/8/07. Just before discharge, the doctor at the first nursing home added Namenda to Dad's medications (already on Aricept and Seroquel). Mom was a bit upset that he didn't discuss this with her and wondered why he'd do it right before discharge, but what a difference it has made!

You know how one can usually expect a setback with a move . . . well none is happening yet. He's been in the new home for 8 days now and he has improved in mood and activity levels trememdously. Still not talking much, but the days of laying in bed staring at a wall or sleeping the day away seem to be numbered.

I can't wait to see how long this lasts!

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Diane
http://dianedidit.com


Sat Feb 17, 2007 8:26 pm
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Dear Diane,
This is wonderful news, how your Dad has improved and even if it doesn't last for long at least it is for now, may he continue to do well :D


Sat Feb 17, 2007 8:33 pm

Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
PE has just started memantine, which I understand in the US is Nemenda. It's called Ebixia. He isn't at full dose yet and I am not sure if it will make a difference. Could someone explain what it is and what it is supposed to do?

Thanks so much. I am so grateful for this web site and the Association for all the help I haven't been able to get from the medical profession here. I think the GP doesn't know and the neurologist won't say. Dinny Wolff


Sun May 27, 2007 12:09 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Namenda is believed to work in two ways at the same time.

The first is by increasing the "signal to noise" ratio (SNR) at the electrical receptors that connect nerve cells to each other. . . think of it like a * party....

At a * party, there's lots of people talking to each other, but you're really most interested in hearing the person you're talking to. The ratio of the volume of the person you're interested in (aka, the signal) to the ratio of the loudness of the party (noise) is the SNR.

One approach is to get the person to talk louder. Since that's not always possible, another option is to get the party to quiet down. Not always possible either.

Memantine works by helping the cell "ignore" those extraneous signals and focus on the part of the transmission that matters - the signal. It raises the minimum level needed to trigger the receptor, so the receptor can't "hear the party", but still hears the intended speaker. It does this on NMDA receptors (the glutamate pathway) and is *also* believed to work on nicotinic receptors (ie, acetylcholine pathway, which is believed to be more profoundly affected). By slightly increasing the threshold, more signal, less noise.

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.

Sorry it was technical, but there's not a better way to explain it that I can think of.

In short, it can improve cognition now, and perhaps protect more brain cells going forward.

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


Sun May 27, 2007 3:41 pm
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
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Eric......

thanks for that explanation. my husband isn't on Namenda yet, but his neuro did mention that eventually he'll probably put him on an additional medication along with the Aricept. I suspect that will be Namenda (as does the neuropsych who recently evaluated him), but apparently the neuro doesn't think it's needed just yet.

By the way, my husband has profound hearing loss in both ears which only serves to make cognition worse, but your explanation of what Namenda does strikes a very similar chord to how his digital hearing aid works. It strives to block out background noise (like in a restaurant) so the hearing impaired person can better hear what's going on right next to him.

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Marilyn


Sun May 27, 2007 4:37 pm
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Joined: Tue Dec 19, 2006 4:38 pm
Posts: 12
Location: Evanston, IL
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Thanks, Eric!

Marilyn, if I were you, I'd push a bit to get your husband started on Namenda (along with his Aricept). I've never heard a negative comment about the results (other than the extra cost). I can't imagine a single reason for not trying something that has worked well for so many with LBD. Naturally, it doesn't work the same for everybody, but what if it would?

It has really helped Dad now for the past 3 months. It doesn't "bring him back" or anything startlingly wonderful, but I swear he has more good days than bad now and when he has good days, he's been pretty good. Good days are so precious with this disease. I really thank the lord above for these wonderful days we've been able to share with Dad that were practically non-existent before Namenda.

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Diane
http://dianedidit.com


Mon May 28, 2007 8:14 am
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[quote="dmp103"]Thanks, Eric!

Marilyn, if I were you, I'd push a bit to get your husband started on Namenda (along with his Aricept).

Marilyn,
I agree with this also, I think getting your husband on the Namenda now would help a great deal, what are they waiting for ? More of a decline? Eric explained it well with what it is supposed to do I never had any dealings with it but I do know everything I have ever read with someone using it, made changes for the better for them, I don't think I ever read anything negative about it. :)


Mon May 28, 2007 8:22 am

Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
Post Diane and IreneS
Thanks for suggesting that Namenda be started sooner rather than later. I certainly will bring up the matter with my husband's neurologist at our next appointment on June 21st. He'll probably wonder how I know about Namenda since he never mentioned the name, but he'll find out that I've been learning a lot and not just sitting on my laurels since our last appointment.

By the way, strange as this may sound, I have yet to discuss the LBD diagnosis with the neurologist, and it may be that he'll prescribe Namenda on his own without my prodding. The neuro did discuss with us on several occasions that the original diagnosis of PD was unlikely, and that my husband had some form of Parkinsonism, but the term LBD never came up and I never even knew it existed. However, when he examined him the end of March, he seemed more concerned than usual, but never really discussed his thoughts with me. He immediately ordered complete neuropsychological testing by the Memory & Wellness Center in Boca, and it was at the conference following all the testing that the term LBD first came to my attention. Now I believe I know why the neurologist was so concerned back in March....because the noticeable decline in my husband's cognitive and physical functions in just the few months since he had last examined him was probably suggestive of LBD.

So, I've been sitting with this knowledge since April 6th and won't have a chance to discuss the results with the neuro until June 21st (could not get a sooner appointment). If I didn't think the world of this neurologist, I'd be more than a little upset that my husband and I have been left dangling all this time since the Center rendered its diagnosis. Fortunately, I found this support group, as well as the one at Yahoo, and the support and education I am getting goes a long way toward making life a lot easier.

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Marilyn


Mon May 28, 2007 5:20 pm
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