My DH was probably in stage 4 and sliding into stage 5 or 6 a year ago when he started taking Razadyne. It seemed to help for a couple of months and then he started on his rapid decline to stage 5 or 6. Two months ago his new neuro put him on Namande and the improvement was remarkable. Now, he seems to be going back to the to when he was first diagnosed. He has started the "repeating" phase. Not repeating 15 times within an hour or so, but repeating 3 or 4 times a day for several days. Has anyone else noticed a return to early symptoms? I can't find any thing on this problem. I was so thrilled when he seemed almost his old self on the Namande (except for his memory loss) and now this return to early stage....why are we going backwards??
Judith, I'm not sure I understand your question ... but I think the answer is that Namenda, especially coupled with Razadyne, will help the brain function better, but does not stop the damage that AD is doing to the brain. So you may see significant improvement at first, but as the damage to the brain gets worse, you will start to see a decline in symptoms again. Nevertheless, the meds are helping the brain function better than it would if your husband were not taking them.
This is why I am eager to find a suitable clinical trial for my husband -- some of the new drugs coming down the pike actually attack the underlying pathology.
Yes - I wrote about this in the "drug trial" discussion. Sid used to remember names and discussions IF I explained who the person was, and what our conversation had been about. In other words, he responded to "clues" or "cues", as we called them in Special Ed. He lost that ability. AFter the first BAP III infusion, that ability returned. Now that he has been dropped from the trial, I am anxious to see if the improvement "sticks".
Also, in the very beginning, he was on a fast downslide. When he was diagnosed and placed on Aricept, the downslide stopped, and he remained stable, with the addition of Namenda a few months later. He stayed stable for about a year, then more decline, then the infusion.
Always remember - AD affects everyone differently, and medications affect everyone differently. No easy answers.
Thanks for the response. What I meant was I thought as time went on and if the meds. didn't work as well as they did in the beginning of taking them, that my DH would have symptoms that were more severe (as in later stages) not that he would start to have symptoms of the earlier stages like "repeating". He has not been doing the repeating things for at least six months or more. It's almost like we are starting all over from the beginning stages instead of going from stage 5 to stage 6. Hope this makes it more understandable then I was in earlier post.
Although I know the drugs helped my husband, he also is in a fast decline. Just further along than yours is. Because I couldn't tell you a specific symptom that stopped and has started again I'm not sure if what is happening to my husband is the same thing that is happening to yours, but I do think so.
The drugs help stabilize for a while, and they continue to help slow progression down, but the damage causing the progression continues, so sooner or later if they stopped at early stage 5 symptoms, you will see other stage 5 symptoms coming up again.
And stage 5, although a lot more obvious than 3 or 4, is still very nebulous. It isn't like stage 6 where they either know people's names or they don't. (Although I truly don't know if my husband knows the family names or not because he doesn't use them, and probably never did.) They either can find the bathroom in time, or they can't.
The specific symptom you mentioned is an interesting one. For my husband it changed as the disease progressed. We were on a bus trip before diagnosis (probably stage 4) and he couldn't retain where we were going next and asked over and over again. That pretty much went away. For a while he would start asking about when the garbage went out on the curb on Sunday or even Saturday. It goes out on Tuesday. Now I know he is sicker. Last week he NEVER asked that question and was surprised when Tuesday came and I mentioned it at lunchtime. He had a hard time dealing with putting it out after supper because we had just eaten. I guess he has lost the words for lunch and supper.
Mostly he asks questions about things that bother him. Those things can be good things, like a promised outing with "the guys" or it can be a worrisome thing, like the garbage, or it can be something that is really worrying him, like a doctor's appointment. I hold those down by not talking about things that are coming up until a few days before they happen.
Starling: You hit it right on the head. The things my DH ask about 3 or 4 times a day for days on end are things he is worried about. He just had his six months dental appt. and he wants to go to a different dentist the next time he needs a check up. He keeps asking me if I have made the appt. for the different dentist. I have told him time and time again I will do it when it gets closer to the time for him to go....like six months from now. I think now, I will just tell him I made the appt. and make up a date. He also starts talking on Sunday about putting the garbage out and it doesn't go out until Tuesday evening. We made a recent trip to Reno from So. California for a wedding. When we were at the airport and he looked up at the schedule screen and it said Chicago, he ask me if we were going to Chicago and why we were going to Chicago. That one really threw me. We had talked about going to Reno for this wedding for months.