DH went to see a new neuro about 2 weeks ago. He checked everything including bood and a chest X-ray. Yesterday I got a phone call asking if DH had ever had a chest or rib injury. I told her he had broken ribs (over 20 years ago from a car accident) that's when she said the X-ray showed a "thickening" and the doctor wanted him to have a CT scan. I was thinking the first part of April and about an hour later she called again saying DH had an appointment at the hospital for 1.15pm today!!!!
This morning DH starts saying we couldn't go and I finally figured out what he was trying to say. We couldn't go because we couldn't get the accident report from Ohio that fast. No one asked for a report and I didn't tell the nurse how DH got broken ribs.
The neuro put DH on the Namenda starter pack. Friday will be 2 weeks but I am wondering if the Namenda makes the memory worse. Last week he was reading about the Iditarod and asked me how many states there were. I told him 50 and he then asked if Alaska was one of them. Has anyone noticed more memory loss since starting Namenda?
Jean, my wife started Namenda maybe six years ago and has continued it ever since (along with Aricept), and I can't say that we've ever noticed any effects, positive or negative. My impression is that it works silently (if at all), slowing down progress of the disease -- you just have to go on faith and keep taking it in the hope that it's doing some good.
I could tell when DH was put on Namenda that he seemed to have a spike up and then went back down. He appears to have a better time remembering. On Aricept, we had samples and I ran out. I really didn't think it was doing anything until he went a couple of days without them. They definately made a difference!
I am starting to see the same behavior that you are describing. I hope all goes well for your DH and you at the hospital today.
My Dh's memory wasn't great it just seems like he is forgetting more. He has asked numerous times since lastnight what time we would be leaving for the hospital. He also has an appointment for a colonoscopy on Thursday and has been asking what time we leave for that. I know the memory button is out of whack but it seems like after telling the same thing it would sink in eventually. I have never had patience and this is really trying the miniscule amount I have!
<<I have never had patience and this is really trying the miniscule amount I have! >>
Jean, what's that prayer that goes something like, "Dear Lord, please give me patience -- AND I NEED IT RIGHT NOW!"? You're going to need lots of patience before this thing is over. One thing I've found is that it's best not to mention appointments until the last moment.
Re: Aricept and Namenda. I don't believe a few days on and off the drug should show that much. Doesn't it initially take a month or two to actually begin to work? I often read about us all stopping this drug or that drug on our own. Is that really a good idea without discussing this with the docs. I admit I considered letting him skip his daytime Seroquel, (see earlier post)..but didn't in the end. It was a one day 'thought'. I defer to the practicing Neurologists to understand the pharmacology of the drugs they prescribe, and wouldn't dream of changing their programs for my LO without their knowledge.
All this being said, I would suggest that the drugs can slow the progression of the disease in the Mild to Moderate stages. Once they are in the Severe stage, I would definitely question (and discuss) the purpose of these same drugs.
Jean21, As other have said, it could be just the regular up's and downs. But my Dh took a big downward spiral when on Namenda, though from what I have read it's rare as Sunshyne said. Within a week of taking off, he was at least back to a normal AD life. You can not take them off of them by just stopping!!!!!!!!!!!! If you want to take him off, you have to take them off of it just as you put them on, slow decrease versus slow increase. Your Doctor will guide you on how to do it. Though my Dh's doc didn't, but was advised how to from a nurse, who knew/saw what I saw. She told me I had every right to at least try to find out if that was what was going on, if after a month off I didn't see a improvement I could always put him back on. As I said, huge improvement so for us it was the right thing to do. Rk
Jean, the examples you just gave were "traumatic" events that your husband may fear. (Ask the folks here how many were eager to go for a colonoscopy ...) In situations like that, if I'm foolish enough to tell my husband very far in advance, he'll ask me when the appointment is over and over and over and over... If I don't warn him until it's time to go, things are fine. Or if I tell him he has an appointment with a doctor he loves, but it's just routine, he does SORT OF okay.
So I think the problem may be visits to hospitals / doctors for unpleasant procedures, rather than meds or advancing AD.
All I can say is the last time I had a colonscopy, it was the last time I had such a wonderful sleep!!!!! If it wasn't for the day before, it would be worth every minute!
Good luck Jean with the day before! Some doctors are willing to let you take pills instead of drinking the quantities of liquid. To be honest, I would NOT ask my husband to have a colonoscopy.
This colonoscopy was NOT my idea it was DH's. Last year he was supposed to get one and drank the liquid one glass after another with no breaks in between. I was washing sheets in the middle of the night. The next day he was sick as a dog and I had to call and cancel. This one has come about because he says he has a leak...... he feels wet and if he wipes his rear end even without a BM there is a trace on the tissue. He thinks he could be out somewhere and have diarhea. So I am letting him go on this one and if he complains the you know what will hit the fan. ROFL BTW he has had colonoscopy's before this will be the 34th one. The others were before AD.
Geez...34 colonoscopy's in one lifetime????????????????????????????????????????????????? Even with one every 2-3 years after the age of 35, that's amazing.
Actually, RK, you are correct with the age 50 unless there is history of colon cancer in the family, or if you have had colon problems, an abnormal number of polyps, etc. you might start in your 30's or 40's. BUT 34? His gastroenterologist sounds over zealous.
wow! Does any insurance pay for that many?? As I clean out my husband's "office" (which he never enters any more - I hope - I'm finding so many compulsive-saver type things, not just twistees or pennies or empty boxes that something came in, but pop-tops from soda cans, etc) - I realize he probably had something going on, mentally, well before it was recognized as Alz.
Briegull, I'm interested in how many AD patients demonstrated OCD in the earlier stages. Another interesting similarity is often seen between autism and AD. (and OCD). I have a young friend who has a non-verbal autistic 10 year old. He could be a Stage 6-7 AD patient in so many ways.
Getting back to the Namenda for a moment. My husband showed very confused after amonth on Namenda. This was about 3 or 4 yrs ago, and he has actually reached that stage again since then, but after a month on the Namenda, he couldn't find his way to our son's home (he was still driving) and there were other things. It was thanksgiving, and everyone noticed how confused he was. They lowered the dose but to no avail, and it was at least another month before he came back to where he was.
Yes. I didn't see anything with Razadyne, but the combo of Razadyne and Namenda is probably responsible for my husband's current long plateau. Once he was on the full Namenda dose I saw an improvement. Then he continued to slide through losing his license and driving privileges. But frankly there hasn't been much change since last May. That is a good 10 months with very little slide at all.
my DH also had long plateaus on namenda and before with combo razadyne. before he developed side effects. it got him thru several yrs of less decline. but i do say his aggressiveness was due to that time on the drugs as well. off all these meds hes as nice as pie but has slipped in the incontinence area. its a tradeoff. i am not sure the incontinence wouldnt have surfaced even on the meds-i would still do the trade having him docile and sweet but incontinent. the hatefulness and inablility to control him or his behaviours was just as horrible-divvi
We are having good results (I guess) with Aricept 5 mg and Namenda 10 mg. given only in the mornings. My DH has not worsened significantly since dx'd 6 years ago! He still does everything for himself; can do stuff around the house; he did stop driving on his own after a minor car accident 4 years ago. But I have seen very little, if any, decline. By the time he was dx'd, he was already repeating, repeating, repeating and losing things - and it's still that way. I can handle that!
Yes, bluedaze, my husband improved a lot when first given Namenda. He held fairly steady for 3.5 years on that and a low dose of huperzine A, just a little slippage recently. The neuro wanted to increase the cholinesterase inhibitor, told me to decide whether to double the huperzine or add a low dose of galantamine. Gads, the choice! He's been fine on the huperzine so I felt comfortable doubling that, but it became clear we'd never get him into a clinical trial on that, so I picked the galantamine (in fear and trembling that we'd end up with a side effect). But so far, he's doing fine, a bit better I think since the galantamine was added.
Do you mind if I ask why your neurologist asked you to decide which drug to select for your husband. I respect your research and knowledge. and I'm sure she /he does as well. Just a bit unusual, recognizing the ego of most doctors.
Namenda, neurontin and lately, trazadone. Amongst them there's been very little sliding down over the last year. In fact, if anything, there's a good bit less tension.
My DH actually improved and has held steady with Aricept and Namenda. It's been over a year since diagnosed and hasn't had any decline that I can tell. Maybe just a little after his heart attack. Hope that adding Axona will help hold him where he is a little longer also.
We're giving DH 10 mg. of Namenda and 10 mg. of Aracept twice a day. This is off label for the Aracept and we needed a statement from the Neuro to accompany the prescription to Medco. He's still declining. Definitely not as alert as he was in August when the meds were upped. I think I can see the difference month after month. He's very quiet lately, and sleeps quite abit. Certainly not one to rage - with exceptions of little outbursts of frustration occasionally.
I should NEVER complain about anything after reading your posts, but if I were to be allowed, I'd just mention how terribly lonely I feel. Gosh I miss him.
The combination of Aricept and Namenda has been very effective for DW. I believe it is responsible for slowing her decline in to the later stages of AD. The Neuro Doc took her off of Aricept about 3 weeks ago because of the potential for stomach irritation. She seems to be slipping some now, her memory is getting worse. She has taken the combination for over 5 years, she is in early stage 5.
Gosh, Nancy, I didn't ask the neuro why he asked me to choose. It seemed like a normal part of the conversation -- we were talking about upcoming clinical trials, and the choice might have affected eligibility. I will grant you that neuro's often tend to have egos... but this one is quite nice. He works with the ADRC, and I picked him to be my husband's neuro because he's tested my husband, and my husband likes him -- which has NOT been the case for all the people who have tested him!
Nancy-I also did my husband's drug regimen. I did my research and evaluated drug response. All Bill's docs went along with me-probably to get me off their backs :-)
I said, and still do, agree with divvi. I believe when someone comes into their office and strikes up an intelligent conversation re: drugs, etc., they are pleasingly surprised. I know I go in with (what I believe) are good questions, date and updates re: DH's changes, - I don't (ha!) EVER just sit there like a dummy.
I sit on the front edge of the chair...and lean forward when I speak to her. Body language is effective. She listens, too!
We started on arecept 7 or 8 yrs ago, then tried Namenda, then switched to Exelon but DH has been going downhill. he wakes everymorning confused, and tells me how confused he is. He is also in a test study for resveratrol (the stuff in red wine) but I'm having a hard time getting him to take it twice a day. he just doesn't stay awake enough to drink 2 glasses of grape juice plus his ensure evey day. Eventually the meds don't work anymore.