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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 18%  18%  [ 23 ]
Tried it, and had problems so we discontinued using it. 9%  9%  [ 11 ]
No, never used it. 40%  40%  [ 51 ]
Total votes : 129

 Memantine/Namenda Survey 
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
Lynn, PE has been taking Namenda and Exelon for about 3 years and it-Namenda- has been a life saver. I have posted a few times about this, always very positive about it. The Dr. said it was good for three to five years, and the three are up this month. PE'S decline is very slow, and I just hope the Namenda will keep up its good work. If I notice that the decline accelerates, I'll see if the Dr. thinks it's the entire disease or the Namenda not doing its job. So I'll let you know. I hope this helps. Dinny W.


Fri May 14, 2010 11:38 am
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post 
Lynn,
My hubby has been on namenda for almost a year and a half. He couldn't tolerate aricept or the exelon patch and was nutty as a fruitcake before he started namenda. You know, all the bad stuff LBD patients do. But namenda turned him around 360 degrees. Got rid of the hallucinations, illusions and delusions and capgras. For us it was a lifesaver. His neurologist told us it would be good for about 2 years. We've had a little decline lately, but nothing horrible.


Fri May 14, 2010 8:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post 
Thanks for your replies. Do you have any idea what stage your LOs were in when they started these meds? My dad seems to be in the final stage and just started on these a couple of months ago. One of his nurses today told me she thinks he is noticeably calmer with the drugs. This isn't my experience, but she sees him more days than I do. But, when I see him, I spent about half a day with him every day, which she doesn't do. Hard to tell which observation is more accurate overall.


Fri May 14, 2010 9:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
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Today my dad was mentally clear and his speech was clear for about about 10 min. on the phone. That's the best his thinking and speech have been at the same time in about 7 or 8 months. Is that the Namenda and Aricept or just an anomaly? He still isn't able to do anything physically except hold a kids' sippy cup. It'll be interesting to see if this happens again.


Mon May 31, 2010 8:35 pm
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Joined: Thu Apr 29, 2010 3:09 pm
Posts: 5
Location: Utah
Post Issues with Hearing on Namenda
Dad has been on Namenda for about 4 months now and I have noticed that he is more aware of how bad his memory is (which is kind of a good and bad thing I guess) but he has also started telling me that his hearing is so good lately that he has to have the television on the lowest it will go because to him, it sounds like it is so loud otherwise. He also told me that while I was talking with him one day that it sounded like I was screaming because I was so loud. Anyone else had this? I'm wondering if it is related to the Namenda because he has been on Aricept for about 9 months and never had the problem before but maybe its not the drugs at all and maybe just the LBD?

On a positive note, dad has been so depressed and had secluded himself for the most part for the last two years. I had a very heart-wrenching decision to make on whether to move him from a city where he had one friend that was about 50 miles from my home or to move him closer to me. I decided to move him into a retirement community (not AL) and he has made so many friends! He seems happy, and has energy and loves his new place. He knows that his memory is shot and he has just learned to adapt, as well as he can, by "hanging out" with others who can help him with the memory. He still calls me about 10 times a day to ask the same question, but its nice to see something positive for him.

Thanks in advance for any help!
Tanya


Sun Jul 04, 2010 8:45 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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My husband does not take Namenda but has been on the Exelon [rivastigmine] patch for 2.5 years and it causes his hearing to be hyperacute. He can hear a pin drop in the next room and ask, 'What was that crash?!' [slight exaggeration, of course] It's interesting because, prior to the Exelon, he was slightly hard of hearing and always had the TV on at high decibel level, which drove me nuts. I got his some cordless headphones but he never wore them. Since he's been on Exelon, everything can be at low volume. The downside is that he is easily startled and irritated by noise and I have to refrain from 'yelling' at him, e.g., speaking barely above a whisper.

_________________
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 04, 2010 9:15 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Acute Hearing
This brings up a topic I've thought about asking the group. In our case I don't think it is because of the exelon because acute hearing began years before the med. My Mom's hearing is better than anyone I know. She can hear someone speaking when they are 100 feet away. No matter who they are speaking to, she thinks she is the one being addressed and she'll answer them. She is acutely aware of people's snoring, walking, television, reading aloud, pagers, anything. When I choose a place for her to live one of the prime factors is how quiet it is (of course, this changes). My family has oftentimes told administrators that my Mom's sensitive hearing is a problem because she thinks that everyone is yelling at her. I've found that most caregivers in ALFs speak loudly because they are accustomed to talking to deaf people so I go around saying "she's not deaf. She can hear better than you or I. She can hear everything you say". I'm constantly explaining to Mom that people aren't yelling at her. The "yelling" totally bums her out. She can't understand why people are so mean to her which breaks my heart.

Mom didn't always have this acute hearing. The earliest I remember it is about five years ago, years before she was on any medications other than for thyroid and osteoporosis.


Sun Jul 04, 2010 10:45 am
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post hearing
My LO used to have tinnitus, (ringing or buzzing in ear) but now claims not to have any more. I think this may have been since starting Aricept or Namenda. Hmmm maybe I should take some.
Mary


Mon Jul 05, 2010 9:56 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
The startle response occurs in many neurodegenerative diseases, even in the case when no medication is given.


Mon Jul 05, 2010 11:45 am
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Memantine/Namenda Survey
Wow! Mom has 6 days of 10mg Aricept left. Medicare doesn't cover Aricept so we asked the neurologist for an alternative and he gave us samples of Namenda. She is still very lucid. Should I call the neurologist and ask for something else if Namenda works for only 3-4yrs.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 10:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Memantine/Namenda Survey
Tiny,
Do you mean that the Medicare Part D plan provider's formulary doesn't include Aricept (donepezil)? That would be a little hard to believe. Aricept is an AChEI. There are two other AChEIs -- Exelon (comes in a patch form, which can be very handy) and Razadyne. Razadyne is the only one presently available on generic. I think donepezil will be generic in May 2011. There's better data on Exelon in Parkinson's Disease Dementia (one type of Lewy Body Dementia) than there is for Namenda. But if your mother can't get any AChEI, then I'd be happy with the Namenda. Just my (layperson) two cents...
Robin


Tue Dec 28, 2010 10:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Memantine/Namenda Survey
If you could get a drug that had positive effects for 3 - 4 years I'd say you hit the jackpot! Lynn

_________________
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.


Tue Dec 28, 2010 10:09 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Memantine/Namenda Survey
Robin,
I called on day one after my brother paid out of pocket- Part D doesn't cover donzepil. But thanks I'll call tomorrow and check about the other 2.

LTCVT and Robin,
Shouldn't she wait for more of a downward turn? She bakes, cleans, does laundry. My thought is what if she takes it now and in 3-4 yrs she's reached max capacity and then nothing else works as well as Namenda.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 10:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Memantine/Namenda Survey
I don't think Part D pays for the Exelon patch, either. Our company-paid insurance will be gone at the end of this month and we will be using Medicare D. I just ordered a three-month supply of the patches but after that, who knows?

_________________
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 Dec 28, 2010 11:24 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Memantine/Namenda Survey
Mom has Part D and Blue Cross?Shield supplemental. She'd already reached her deductable so the supplemental has worked out very well and she hasn't had to pay out of pocket yet ( Thank You, God). I'm sure there is someone who could help better than myself. The awesome nurse at the neurologist's office took pity on me and explained a lot.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 11:55 pm
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