At our last neurologist visit, Doctor was reluctant to prescribe exelon (sp?) because husband is losing weight
and is is of a slight build to begin with. He felt possible gastro problems would outweigh cognitive gains but told me
to think on it. Our next appointment is in 3 days. I feel that we must have some help in treating a fairly rapidly
decline in cognitive skills including completion of simple tasks such as putting clean dishes away, etc.

Does anyone have any experience with living with stomach issues? Is it possible to do so if the drug is helping the head?

Right now he is only on low dosage sinamet and mirapax for the parkinsons. He needs more help.

Thanks.

My husband has been on the Exelon patch since early 2007 and has had no stomach issues. I believe the patch has much less effect on the GI system.

My dad was on the Exelon patch for many months and didn't appear to have stomach issues with it. Lynn

Exelon, Razadyne, and Aricept are the drugs at the core of the treatment for LBD. My own 2 cents is that you MUST try one of these medications. The Exelon patch has fewer GI side effects. But you won't know until you try. I wouldn't wait any longer. Exelon is the only FDA approved medication to treat PDD (Parkinson's Disease Dementia).

An alternative you can consider is Namenda. But there's not as good data on Namenda as there is on Exelon for PDD.

Alas, there are no guarantees. Different people react differently to most drugs. The only way to tell is to try. You know what life is like without this drug. See what it would be like with it. Keep your observations keen, of course, and be on the alert for adverse reactions.

Best wishes!

My hb was on aricept and had to discontinue it because of the intestinal problems. His neurologist had me try the low dose of exelon, and it has helped some. It has not affected his appetite at all.

Exelon really helped my mom and her dementia when she first started it. We then had to up it twice to maintain the level of cognitive function that it gave her. Unfortunately, the last time it was increased it triggered a manic high (my mother is also bi-polor - great combination). The neurologist ended up taking her off of it all together and oddly, she still seems fairly lucid (more so than before the last increase). I find myself always amazed by my inability to predict how these things are going to work out. The thing I have noticed lately is that she is having more lucid dreams and is becoming paranoid again. She is absolutely convinced that the woman who was her favorite nurse at her ALF is now beating her. When I spoke to my mother about this, she said that her insides are all twisted and that this is due to the nurse beating her. My mother has gut pain a lot. After speaking with my mother, I learned that she had wanted her medications early and that the nurse had told her no. My mother turned that no into a sense of personal rejection and that sense of personal rejection into physical pain that (in her mind) had no explanation except that the nurse was abusing her (this same accusation got her asked to leaving the previous ALF that she was in - they will not keep people who accuse them of abuse no matter how obvious it is that these accusations are coming from hallucinations and lucid dreams). I tried to explain to my mother that the nurse could not have caused her internal gut pain by hitting her since there were no bruises or outward signs. My mother insisted that it was real to her and that she knew it was true because she felt that it was (my mother seems to go with her emotions as her source of reality no matter how much real concrete evidence there is to the contrary). The nurse spoke to me about this later and said that my mother is going to eventually become violent. I sure hope the nurse is wrong. She said that most people with DLB become violent near the end. Is that true? I hate these pronouncements that the ALF staff always make about my mother and her dementia. They also claim that my mother is poorly behaved when she knows that we are coming to visit her and that they would appreciate it if we would not let my mother know that we are coming before we do. But I have transgressed - I really liked the Exelon patch and what it did for my mother until it triggered the manic high (and the paranoia and behavioral issues that go with manic highs for my mother). I certainly would try it myself. You can always have it stopped if the side effects are more than he can handle. Good luck with it.

Liz

Her nurse is wrong. Some with LBD never become violent. My husband was violent early in the disease and is less so now [of course, he is more medicated now]. I don't think anyone can predict future behavior in Lewy. Doctors don't even try. There are some facilities in our area, though, that will not take LBD patients.

Liz,

The nurse told you that your mom was eventually going to become violent. Was this based on her exposure to two other patients who had lbd? Or maybe the extensive research she does on her off hours?

Sheesh.

I wish people who don't know what they are talking about would quit making sweeping pronouncements.

If she really had that kind of crystal ball she would retire to Vegas.

Thanks Pat and Jeanne. It is good to hear. I agree with you about the crystal ball. I am always amazed by the things they tell me. But - assisted living is not a choice right now and we haven't been able to find the perfect place (after figuring out doctors, this has been the most difficult aspect of managing my mother's care).

Liz