I haven't been on the boards here for awhile. Daddy mercifully left us to go be with Mom the morning of Oct. 6, 2010. He was 92.

Daddy wasn't diagnosed with dementia until Feb. 2010, and not with Lewy Body until very late: August 30, 2010. By then, he had been on Exelon for about 4 months. As with Aricept, the dose was increased to the 9mg. (He was on Aricept for 2 months prior, but was taken off of it due to severe diarrhea. But he had done GREAT on the lowest dose.)

By September, he felt so awful, continued with horrendous hallucinations, had a haunted look and grey under his eyes, was still often confused and irrational, was physically worse, with frequent falliing and some noticeable tremor; that I asked the doctor if we could d/c the Excelon since it didn't seem to be doing him any good anymore. The doc d/c the Exelon and started him on a very low dose of depakote.
Lo and behold!!! Gradually he became better! For some reason, the hallucinations stopped, he had more mental clarity, though he still became confused and had word finding and other memory problems, his color was better and he didn't have that haunted look. He quit yelling and thrashing around in his sleep. He still dropped off into dozing for most of the day, as he had been doing for some months. And the parkinsonian symptoms remained, requiring him to use a wheelchair.

I believe absolutely that Daddy had Lewy Body. The hallucinations, yelling and thrashing around in his sleep, memory problems, and delusions were all occurring before ANY meds were introduced. But since he improved so much when the Exelon was stopped, we really wonder if it was CAUSING problems.

Since learning more about Lewy Body, I think that the lowest doses of Aricept and Exelon were beneficial for Daddy; but higher doses became toxic, or at least counterproductive. The literature warns us that LBD patients are sensitive to antipsychotics, but I think they may also be sensitive to drugs like Aricept and Exelon.

The psychiatrist also put Daddy on Risperdahl (sp?) mid-May, but I had him taken off it in July, after I read all the warnings. Also, when he was on it, Daddy's blood pressure dropped even more (though that may have been the LBD), he felt awful, his hallucinations and delusions did not diminish, he had 2 fainting spells and fell (though these may also have been the LBD). But at his age, 92, with cardiac history (2 mild heart attacks, pacemaker implant, chronic congestive heart failure), and dementia, I don't think the Risperdahl should ever have been prescribed.

So I just wanted all of you to know my observations, since we're all doing the best we can, with the little bit of info that's out there. And sometimes we have to work with professionals who don't seem to be as well informed or experienced as we would like them to be. And sometimes there's no research to explain what we see!

I pray for all of you and hope you have as many good times with your LO as you can.

Interesting post. My husband has been on the Exelon patch since early 2007. He also did well on the lower dose but the neurologist said he HAD to 'graduate' to the higher dose. There was no improvement that we could see with the higher dose.

Risperdal almost killed my husband. He was put on it during a stay in a SNF and was on it for almost two months. He couldn't move or talk. After discontinuing it [after I had found some research articles about it], he recovered to baseline within days.

My sympathies on the loss of your father but I'm sure he was ready to join your mother and the long, tough battle is over. God bless you for being a caring daughter.

I am so sorry for your loss , at least you know he is now at peace and free from the disease. Risperdal was a drug that had extremely bad effects on my husband too and I believe it was the beginning of his end, he never was the same after a very short time on that drug, I know it has helped some but not in our case it didn't !

Take care !

My condolences on your loss.

92 , Sad, but what a good life. He'll never suffer again, this is the only way to excape this horrible disease. He and your mom are smiling down at you. My thoughts and prayers are with you and your family.
Gerry

My condolences as well, and I'm sure there's a sense of relief that he is no longer suffering this terrible disease. He had a good long life, and for that I'm sure you are grateful. Lynn

Thank you all for your replies and condolences. Yes, we are so glad Daddy is released from this devastating disease. But oh how I miss him! I'm "Daddy's girl" and he is my hero!
Your comments seem to support my observations. I'm writing to Daddy's doctors to tell them too. Since they are treating others with dementia, I'm sure they'd want to know about reactions to the drugs they prescribe.

Do any of U really understand why give Aricept or the Exelon patch when the LO is 85 or older? I am so frustrated at all these meds that supposedly help LBD. My Mom is on Sinemet,Lexapro,trazadone,Ativan,
thyroid pill,Requip,Aricept (which got d/c today)of course fiber for bowels.
Thanks for any input.
gayle

Gayle,

These medications are prescribed because there's a profound acetylcholine loss in LBD, which the AChEIs (such as Aricept, Exelon, and Razadyne) help. If you find no help from this medication, it *could* be an indication that your family member doesn't have LBD. Or it could mean that there's so much atrophy that there's no acetylcholine being produced, so there's nothing for the drug to help. No one can know exactly what neurodegenerative disorder you are dealing with until a post-mortem brain autopsy is done. Certainly by then it's too late to help your family member with treatment!

It's unusual for someone with LBD to be on both Sinemet and Requip. Many neurologists I know are not willing to prescribe Requip for someone with LBD because of the higher risk of hallucinations.

Robin

Thanks!! I feel really overwhelmed. How can I tell a neuro Dr.?
This is so unfair isn't it that we can't find out more till a post-mortem?gayle