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A
argenon Asked August 2014

Anyone else trying Axona on themselves or have loved ones on it?

I'm just looking around for others who are trying or have tried Axona or have loved ones who are on it or tried it. My mom just started using it and I'm hoping it will help her.

pamstegma Sep 2014
destroyed, statins are bad. Read that again. Thanks.

gladimhere Sep 2014
Destroyed, we are all caregivers on this site. When questions are posted many others will respond with suggestions and ideas. My Mom has entered the later stages of Alzheimer's disease. This awful disease has taken her memories a little bit at a time which is very difficult for everybody that knows her.

There is so much that needs to be controlled when caring for someone with dementia. I for one give my mother a few tablespoons of wine each night for "cocktail hour". This has been part of her life and is important to everybody around her. She enjoys having just a bit of wine, sometimes she drinks it and sometimes she doesn't. This wretched disease has taken so much from her that I am not going to take something that she has long enjoyed. And when she does drink the wine, she gets a better night sleep.

Sure the wine could cause a reaction with meds she is taking. But, you know I really hope that a heart attack, stoke, or anything else ends my Mom's life than the long slow death of Alzheimer's. This attitude is held by many caregivers, we will not take things from them that have provided them comfort through much of their lives.

On this site I always try to be nonjudgmental of how others handle the thousands of issues that can come up. Naturally, there are times that I try to offer suggestions to someone. If they disagree, so be it. They are doing what they can and the best they can in finding what works best for all concerned. If my suggestion helps the poster, wonderful, if not, maybe someone else reading the thread will find something useful. If they don't, that is OK too.

I see you are very new to the site. I hope you can find assistance with things that come up for you. And like the rest of us here, take what you can use, then leave the rest.

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destroyed Sep 2014
Please do NOT take the advise of pamstegman to give alcohol to a person with dementia. Horrible advise. And a statin, have you read about the problems with statins? Who gives advice like this? Please - all the people reading this forum, there is a person who contributes to EVERY question and continues to give questionable advice if not very bad advice.

anonymous144432 Sep 2014
Lord, I didn't know coconut oil can cause diarrhea. I don't have that problem with it. Thanks again for the info.

gladimhere Sep 2014
Cindy and coconut oil is well known for causing diarrhea. Had thought about that too. But do not need additional problems.

gladimhere Sep 2014
Cindy,
LOL! Back to the old adage, don't fix it unless it is broken! This especially applies when caring for those with dementia. It is a fine line we all walk.

anonymous144432 Sep 2014
Gladimhere, mom doesn't have diarrhea at all anymore. The neurologist had told me the combination of Namenda and Aricept should slow the diarrhea (?) She's been on both of those for quite awhile now. I will check out the probiotics though, thanks for the suggestion, good to know should that kick in again. If I were braver, I'd just wean her off the Namenda and the Aricept, but as all's pretty quiet on the home front right now, will rest a bit before something else kicks in, ha-ha. Looks like it wouldn't hurt if I give mom some of my coconut oil (have used this myself for a few years and love it). Thanks much!

pamstegma Sep 2014
It never fails to amaze me how big Pharma can take something as cheap and simple as coconut oil and turn it into an expensive prescription item.

blannie Sep 2014
It's actually fractionated coconut oil. I certainly didn't know that. Sounds like it's verrrry iffy at best...

http://en.wikipedia.org/wiki/Axona

meatjeanne Sep 2014
I would never have given my husband alcohol, with his dementia. Unless you told me was gonna cure him.

pamstegma Sep 2014
Axona is basically triglycerides. If you want to raise trigylcerides naturally, take a glass of red wine. Red wine raises triglyceride levels in some people, it also elevates HDL’s (the good cholesterol) and may protect against heart disease. Just remember, one glass not the whole bottle.
Then reconsider statin use, because the brain needs cholesterol for neural function. If cholesterol is naturally at 200, there is a reason for it. MD's have finally realized that attempting to maintain patients at 140 cholesterol was more harm than good. Most of the harm was to the brain.

DoingbestIcan Sep 2014
My Dad's doctor prescribed it for him, and gave him three boxes of the stuff. Unfortunately we never used it. Once I opened the first box, and read the instructions, we realized Dad could never follow any of those directions. He lives alone, (only three minutes away) , but Axona is taken several times a day, and needs to be mixed, in a specific amount of water, and taken at spaced intervals, with meals (or was it without? ), Anyway Dad could never do any of that. The mixing, the measuring, timing, the remembering, the spacing from meals; even the act if actually eating on a schedule is something he would refuse to do. And his anxiety level shot through the roof, at the mere explanation of having to drink the whole glass, and all the rest of the rules. It turned into a major argument that he obsessed on, and was still fighting about it, days after I told him that he didn't have to even try the stuff. And BTW, he gets loose stools from the Aricept too, so this would have been a problem even if he could have done it. Over all I think this medication is really poorly suited to it's target users.

meatjeanne Sep 2014
Husband was on it after first being diagnosed with dementia/Alzheimer. I didn't see a change but he kept taking it. Can't remember where we got the large box of it.....but when we ran out, we couldn't get it refilled, his insurance wouldn't cover it. Doesn't matter, try anything and everything. Many drugs, home remedies, etc., work differently on different people.

pandabear15 Sep 2014
My mom has been on it for several months now, we did find that there was a slight improvment in her memory. We know it is no miracle drink but if it slows down the progression of her memory loss I feel it is beneficial to her. She does complain at times that it gives her a stomach ache, but I believe that is because she doesn't always eat right and then drinks it too fast.

gladimhere Sep 2014
Cindy, does your Mom take a probiotic? The PA at mom's doc office suggested it to help control her diarrhea. And the problem had been constant four or five times a day. Now there is rarely a problem.

anonymous144432 Sep 2014
My mother already had a problem with the diarrhea on Aricept, so I said no way to the Axona, but I mostly hated the pushy attitude of the neurologist's nurse when she handed me the sample; you'd have thought she was a drug rep. She seemed deeply offended when I bluntly told her all we needed was more diarrhea. I no sooner got home with the sample when I got a call from a pharmacy wanting to get the prescription started. Thanks but no thanks.

gladimhere Aug 2014
My Mom was given a sample of Axona a couple of years ago by her doc. We never used it because of the warning on the bos of causing diarhhea. She has had a chronic problem for as long as i can remember, the last thing she needed was for that problem to get worse.

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