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 Is it too late to try Aricept after 2 year diagnosis 
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Is it too late to try Aricept after 2 year diagnosis
My husband has been taking Namenda for a year and I had hesitated to have his Neurologist prescribe Aricept or Exelon because of the side effects. Most of the people at our support group, which is primarily for ALZ patients (there are no LBD supports in my city), have there LOs taking Aricept. Now I'm thinking I may have made a big mistake since my husband's cognitive function is worsening. His doctor give me the list of the additional meds, but did not pursue the issue. Do you think it's too late for me to get this script for him. I guess anything is worth a try....i just hate to make him physically ill and additionally, if he does become nauseous, i don't think he can take Compazine with LBD. Any suggestions are appreciated. Thank you.

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Ann, Wife of Beloved Husband with LBD/Capras Syndrome and Parkinsonism.


Tue Jul 22, 2014 6:14 am
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Re: Is it too late to try Aricept after 2 year diagnosis
Here I am again, answering my own question....after reading many posts regarding Aricept, I realize that it may not be the med. of choice at this time since a few of you said it created crying episodes for their LOs. Additionally i do not know if it is approved for LBD. Would the Exelon patch be a better choice? I know I need to discuss with his M.D. but I also appreciate caregiver's experience with their LOs even more. My husband has probably had LBD longer than the 2 year diagnosis, but was previously misdiagnosed and we were initially sent down the wrong path. Thank you as always for your help.

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Ann, Wife of Beloved Husband with LBD/Capras Syndrome and Parkinsonism.


Tue Jul 22, 2014 6:39 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Is it too late to try Aricept after 2 year diagnosis
I can only tell you from an experience of one, my dad. Here is what I noticed:

1. His cognitive functioning became much better (for a while).
2. His cognitive functioning allowed him to see how truly ill and debilitated he actually was.
3. Because he was able to see his sad reality so much more clearly he became highly frustrated, agitated and depressed.
4. He cried a LOT about my mom, who had died about 15 yr. earlier and was inconsolable when this happened.
5. Because he was so agitated and frustrated that he couldn't perform any ADLs (except feeding himself at that point), he'd smash his hands against the wall so they were always a bloody, bruised mess, and I'm guessing pretty painful although he always said they didn't hurt.
6. He started lashing out at CGs, me, my sister and all but one of his friends when we'd visit him.

Therefore, I asked that he be taken off the Aricept (as well as Namenda) as he was put on both at the same time when these symptoms all appeared. This became a huge fight with his CNP and the psychiatrist who prescribed the meds, which at first seemed like a Godsend.

So, be careful what you wish for, go slowly with all new meds being introduced, and hopefully your LO has a dr. who will listen to you when you give them thoughtful feedback and data about changes in behaviors. Ours didn't and it became a real fight and almost a lawsuit.

Good luck, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jul 22, 2014 7:26 am
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Joined: Thu May 15, 2014 10:41 pm
Posts: 102
Location: Phoenix, AZ
Post Re: Is it too late to try Aricept after 2 year diagnosis
Ann - I don't have specific advice about the medications, but just wanted to note that your husband's cognitive deterioration would likely have happened even if you had found the perfect medication mix two years ago. From all the reading I've done, and our own experience trying to use hyper-precision with my dad's medications, and watching dad's every slide & improvement, there is really nothing to be done, ultimately, about the deterioration that comes with LBD. This is not to say that the medications aren't VERY important, and I don't intend that to sound hopeless. I'm so glad we fought those battles, and I think we got the best possible outcome for my dad along the way. But ultimately, in our case, so much of our anguish was caused by the fact that we took it as our mission to *improve* things - and every little upswing we took as proof that if only we could find the right series of buttons to push, we could battle Lewy. I think Lynn's story is a good cautionary one. Our goal should be comfort, and whatever quality of life we can find for our loved ones at the stage they're in, realizing that we're beating our heads against a wall if we're trying to improve their mental acuity. I can see how doctors' goals might go in a different direction, as they are trained to fix and improve, and they define quality of life as looking like it used to look. At some point, acceptance of the progression of LBD needs to happen - it just comes at different times for different people. But our loved one's quality of life may be enhanced when we are finally able to go there, and focus less on fixing.

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Tue Jul 22, 2014 9:03 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Is it too late to try Aricept after 2 year diagnosis
MollyK - I think you have summed up the whole thing so eloquently in your post. It is a progressive illness. There is little that we can do to improve things most of the time. Keeping our LO as comfortable mentally and physically as possible is the ultimate goal.

When I was in the depths of despair a few months after my dad had his overnight decline and ended up in the hospital, rehab then ALF, I was seeing a counselor who works with family members of dementia patients. It was comforting to know that someone knew exactly what I was going through. The only hope she could offer me was that, as she put it, "your dad will eventually enter a lalaland state of mind. He won't really know what's going on, how ill he is, and he will have a sense of calm that will help give you a sense of calm."

Well, that lasted a couple of weeks, then, his psychiatrist put him on Namenda and Aricept at the same time. Almost immediate improvement in cognitive abilities shortly followed by the extreme agitation, hitting the walls, fighting with CGs at the ALF, inconsolable crying. These symptoms were of absolutely no consequence to the CNP or the psychiatrist and they refused to take him off the meds. Because they thought he could now "read the newspaper" (he couldn't, but he said he could to them) and things like that, they thought that was fantastic. It was devastating. Despite mine and my sister's best efforts, he was not taken off those meds until maybe 2 - 3 weeks before he died. For months he was like a bed-ridden skeleton and the only thing he could do was get mad and smash his hands against the wall or bite his CGs when they tried to lift him into a whirlpool bath.

My only recourse was to file a lawsuit against the CNP and the dr. and I did not have the mental strength to go through a lawsuit at that time. I did fire the psychiatrist and told the head nurse at the ALF to take him off the meds but the CNP (who had who-knows-what kind of relationship with the psychiatrist) told me she was going to sue me and my sister and she put my dad back on the meds.

I think Namenda and Aricept have some merit in the early stages, but later on I think they can cause devastating issues like my poor dad experienced. I prayed every day he would die in his sleep, as death was the only release he was going to have from these awful medical "professionals" and this terrible disease. I don't need to sound morbid, but that is what our experience was, and I hope it will help someone else avoid what my dad went through. Also, if any of you have a LO on the ES of MD, I can recommend who to avoid for "care". Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jul 22, 2014 10:04 am
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Joined: Wed Jun 25, 2014 11:24 am
Posts: 60
Post Re: Is it too late to try Aricept after 2 year diagnosis
Dear Molly and Lynn,

Thank you for your advice and again, you have my sympathy for what both of your have endured with your loved ones. I do realize that it may be too late to add the extra meds and you have helped me to accept the reality of the disease and just try to make the best of the good days.

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Ann, Wife of Beloved Husband with LBD/Capras Syndrome and Parkinsonism.


Wed Jul 23, 2014 5:54 am
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