I would like some input to this question. I have read that the ALZ medications only work for about half of us. I am on three different med's. I noticed things changing for me about 6-8 months before being told I had EOAD. But, I don't know if they are helping me. Lately I have had trouble finding the word for something, but I know what it is. If anyone has any answers I would like to hear what they are.

Sharon

Sharon, brace yourself, as I say . . . There are no easy answers.

Don't you just hate that?

About half of us benefit from the anti-AD drugs, and among that half you find people who responded really well, and those who barely benefited, and everything in between.

What I hate most is, there seems to come a time when the only way to be sure a medicine is helping is, to stop it. But then, I've read that if we stop the medicine, when we re-start it we'll never recover to where we were, pre-stopping.

I was taking Namenda about 2 months, when I started noticing that my writing style was improving. I mentioned that to friends, who said they'd noticed I seemed to generally be doing better. Of course, I've continued in symptom progression, but it seems like I'm sliding a little slower.

Re: trouble finding a word, but you feel like you know it: I think that's when two parts of your brain aren't quite connecting. A word's meaning is stored in one spot, and the neurons that tell you to speak it are somewhere else. The two parts send their signal to a third part of your brain, which interprets the two signals and forms one. It sends that information to the part of the brain that controls the speaking of the thought.

Meanwhile, there are also connections to the part that has emotions about the thought, or that wants to move in connection to the thought, perhaps hormones are secreted in reaction to the thought causing bodily reactions, and on and on. Thinking is so darn complex, it's a wonder anybody can do it.

Dear Sharon,
As Alan has said, this is a difficult question to answer.
As for me, I'm stubborn, hard-headed, and I needed REAL proof. So, I stopped my meds last year for about 3 weeks or so. I was visiting with my daughter at the time. One day I was very mixed up and she asked what was going on. I said "What do you mean?" She said you seem to be more mixed up and forgetful! When I told her I had stopped my meds she nearly hit the ceiling. Anyway, I re-started my meds, have added some supplements, will not stop them again!! I think I did decline some that didn't come back. That's what I get for being stubborn!!!

Hope this helps you.

But as you know, everyone is different!

I just have to throw my 2 cents in here.

One of my biggest pet-peeves (if that's what you want to call it. . .) through this whole process is when we visit the neurologist and he always asks: "still taking the medication?" (hubby is on Aricept and Namenda) and then he asks "is it working?"
Okay, what am I supposed to reference it to? What is my comparison. How is it supposed to work? Is he getting better? NO! But it's my understanding that that is what is expected. In theory, the meds are said to slow things down. Well, how fast or slow was it going to be originally, without the meds?

Okay. Sorry. Just had to vent and get that off my chest, because I've never been able to jump up and down and throw the fit I feel like throwing in the Dr's office everytime he asks me that question. I usually just respond with a shrug of the shoulders and say "well, we have good days and we have bad days. . ."

It is what it is.

quote:

Originally posted by DSM14:
I just have to throw my 2 cents in here.

One of my biggest pet-peeves (if that's what you want to call it. . .) through this whole process is when we visit the neurologist and he always asks: "still taking the medication?" (hubby is on Aricept and Namenda) and then he asks "is it working?"
Okay, what am I supposed to reference it to? What is my comparison. How is it supposed to work? Is he getting better? NO! But it's my understanding that that is what is expected. In theory, the meds are said to slow things down. Well, how fast or slow was it going to be originally, without the meds?

Okay. Sorry. Just had to vent and get that off my chest, because I've never been able to jump up and down and throw the fit I feel like throwing in the Dr's office everytime he asks me that question. I usually just respond with a shrug of the shoulders and say "well, we have good days and we have bad days. . ."

It is what it is.

I have the same question. We just started my wife on Namenda - today was Day 1 - and what exactly is the benchmark against which we can measure its effectiveness? Is it really just a placebo for both the patient and the caregiver?

It's a puzzle to me too. At the research conference I just attended, it was said that, after three years on the memory drugs a patient will wind up where he would have been without the drugs. Huh? I've been told that they don't slow the progression of the disease, but they help the patient function better.

I can say for myself, the Exelon patch and Namenda ARE helping my brain function better to some degree. How much? A modest amount of improvement in function. On the other hand, as far as I know, I don't have AD. I have cognitive deficit nos, which means I have a memory problem which is not alzheimer's. It could be affiliated with lupus, chronic fatigue syndrome, anti-phospholipid syndrome, hypertension, or hypothyroid condition. The memory drugs are increasingly being used off-label for non-AD patients.

From what I have learned on these boards, the memory drugs do help SOME Alzheimer's patients but the side effects can be intolerable, making the drugs less useful.

Iris L.

If we could post pictures on this forum I could show you my brain before Aricept and my brain after Aricept.

quote:

Originally posted by Iris L.:


From what I have learned on these boards, the memory drugs do help SOME Alzheimer's patients but the side effects can be intolerable, making the drugs less useful.

Iris L.

Iris L., what are some of the side effects you're hearing about?

Cheri B, what would we see?

RedSox: Some caregivers post that their ADLOs seem to be worse on the memory drugs (Aricept or Exelon patch or Namenda). There may be diarrhea or other gastro-intestinal complaints. There might be unacceptable weight loss. There might be allergic dermatitis from the patch.

You can do a search for these drugs and see what other people's experiences have been.

Every person has a unique response to these meds. You have to give the meds a sufficient trial to see how they work. They are not just a placebo. They help some people. They don't help other people. But there is no way to tell except to try. Give the Namenda a chance. But be on the lookout for side effects.

Iris L.

RedSox2004 you would see my family room stacked with piles of paperwork almost waist high that I couldn't figure out what to do with and another picture with my family room after Aricept where you could actually see the floor and furniture.

Dear RedSox2004 et al,

I do know for me that I did stop taking my meds for about a month about 1 1/2 years ago and I did decline fairly rapidly. So for me, I know my meds are helping.

How much? Well, I don't really know but I don't want to find out again.

I will only stop taking my meds when I think I've declined so much that I am ready to die. Then, I'll stop everything!!!

Remember, these meds don't stop the disease progression. They just slow it down! So far, there aren't ANY meds that stop this monster!

Good Luck. Hang in there!



Good Luck.

Cheri, My home is also packed full of papers and unfiled mail, invoices, etc. from before I had any treatment. Now that I am on Exelon and Namenda, I am more able to attend to things. I really appreciate these meds. I'm not back to normal, but I am somewhat improved. For the moment.

Iris L.

Hi Everyone

Just reading all the posts. I was first started on the Exelon patch and my experiences were horrifying. Diarrhea, extreme weight loss, slurred speech (as if inebriated).

Now, I'm on Namenda. I have been on this since this past February. Tremendous difference. Now, I've gained too much weight.

I do think it slowed the disease somewhat. But,
now I find it extremely difficult to rationalize conversations, I can have days of not being able to identify numbers. In example, money/denominations, seeing a number and not be able to identify it. I know it's back there but, I can't seem to pull it out.

I'm still sundowning. At the time of being on Exelon, I could just "drop off" sleeping. Now, After about 3 good days, I'm terribly exhausted and just as confused. I stay in my robe and won't leave the house/chair.

M

Sharon, as Alan stated the only way to know if a med is truly working is to stop it but I would advise against that without your doctor's advice as if it is working what stabilization ground you are you may lose and you won;t get that back. Some people can see a difference while others may see nothing which means it could be worse without it. Talk to your doctor.

Tracy