Don't know how long it will last - but after cutting DH's Namenda in half, and he stopped drinking his glass(s) of wine in the evening (on his own); things are so much better! Has more energy during the day, doesn't repeat himself as much - hasn't lost anything in awhile and most of the time seems "normal"! Instead of going to bed at 6:30 - he now takes our dog out for a walk (I watch him from a distance), then comes in and will actually watch a TV show - not just flip channels! Then he gets ready for bed around 9:30-10:00, and usually gets up once during the night. I even got a massage the other night! He knew I had been working in the yard and asked if my back hurt when I got out of the shower. I told him it was okay - but he said - go get the oil and I'll rub it! How nice is that??? I know, I know....all this is probably temporary - but it sure is nice while it lasts! He is 85, in fairly good health otherwise - and this week is going strong!
Vickie, soooo glad things are going good for you today. i know just how you feel as when we cut out the namenda DH became much better too. i never thought i would be saying that of course, we all want them to stay on the meds til they cant use them anymore. some folks just dont respond to them like they used to! we are examples. my neuro just last week noted himself that he will keep in mind that sometimes taking his AD patients off the meds could be positive to see how they do since my DH has responded so well without it for last 7mo. anyway, glad you are happy and your DH is with it! divvi
Thanks, divvi. Didn't know your DH has been off Namenda 7 mos! May go off it completely - but will wait for Dr. appt. next month. Plus, his son is a neuro (doesn't live near us though), so I always consult with him. Good things do happen sometimes, but then I guess we just wait for the shoe to drop next! Hope you have a good week.
Vicki & Divvi, When you stopped the Namenda, did you do it gradually or cold turkey? We have stopped the Razadyne ER & now are thinking of stopping the Namenda, since by most research Namenda doesn't help FTD.
Kadee, there are only a handful of anecdotal reports on Namenda and FTD, and most of those showed promise. Now there are three clinical trials to confirm that it helps most patients, and these are still recruiting.
My DH was started on Aricept at dx-5 years ago. Caught very early on. I helped at first. Later, we cut back to 5 mg. only in the mornings - couldn't handle it at night - nightmares, hallucinations, etc. then came Namenda, gradually up to 10 mg. morning and 10 at night. After two years on this he was declining and after talking to his son (neuro) abd GP; decided to halve the Namenda. So I just give it in the mornings. So now he gets 5 mg. Aricept and 10 mg. Namenda in the morning. I don't think I would stop any of it all at once.
Kadee and Vickie, my DH developed myclonous jerks and since it was new i immediately believed the meds he was taking had started to counteract with his AD. he has a history of staying on aricept/reminyl-razadyne/namenda/for yrs actually then out of the blue developes nasty side effects, like vomiting/rashes/diarrhea/general malaise//incoherence//each time so we took him off each drug independently. he was on aricept/reminyl for 4yrs-then substitued the razadyne, another 2yrs then nasty yellow projectile vomiting..ugh..then we opted for namenda alone and that worked pretty good for 2more yrs. i was at ends when the myclonic jerks started and blamed namenda. they were not caused by the namenda but taking him off the namenda as a by way nevertheless caused a dramatic improvement in his behaviour. he was not aggitated at all and would bathe when asked with no battles, he was pacing but that was acceptable, and eating much more and seemed in general more like himself and 'with it' again. even started using the bathroom independently which was an eyeopener. dont get me wrong, i was leary of ending the namenda, but surprisingly was elated he did so well. the myclonic jerks seem to be part of the disease when certain areas of the brain are affected. that is taken care of so far with neurontin daily. the neuro told me to stop the namenda cold turkey and after the appt i stopped the pm dose that same day. i saw no initial upsets and withing days saw the improvements. today 7mos later he is walking, talking (jibberish but sometimes meaningful phrases) and generally speaking from past issues much better in my opinion and neuro agrees he simply is thriving and said 'whatever you are doing is working, he looks great' -so i will take that as a plus..:) anyway, in answer to the question we stopped the namenda overnite. just to be sure you should ask your dr too. hope this helps, divvi
Divvi, As you know my husband also has myclonic jerking, not as bad since adding the Keppra. He has been on the Namenda for about 4 years & had the jerking for at least 3 of those 4 years. The Neurologist always blamed the jerking on the seizure activity, however, now I wonder.
What is myclonic jerking? My husband jerks a lot especially at night but he has done that for quite a while now. Long before he started the Namenda which he has only been on 3 months but I have not seen any improvement in his condition. We see the neuro-phychiatrist tomorrow and may ask about stopping it.
ehamilton, I would definitely mention the jerking to the Neuro. My husband's jerking was making him bite his tongue to the point of bleeding. He would be sitting relaxing & all of a sudden his body or head would jerk to the left. He also jerks in bed. He is now on Keppra, which seems to be helping. He still has them, but not as strong.
ehamilton, several of the spouses have myoclonus (myoclonic jerks). Poor Kadee's husband has really suffered from them. If you enter "myoclon" in "search" you'll find several threads.
NIH has a pretty good "fact sheet" about myoclonus, at:
Myclonic movement was one of the first symptoms (after memory problems) we consulted the Neuro about. He was first prescribed Neurotin for them. They have tapered off the last 2 or 3 years. His were not severe and he still has some that are more like a "tic"" you have with your eyelash only it is a muscle in various parts of the body. You can see them move.