New CG, Question 2: SNAKE OIL?

Welcome floridarick! First of all, it’s nice that your friends DO something, although it may be unwanted. Once your loved one receives an official diagnosis, dealing with these Snake Oil cures may be easier. Personally, I don’t ever consider anything that isn’t FDA approved. The ingredients for non-FDA approved products do not need to be revealed. Consequently, I can’t tell what my LO is actually getting. For instance, if the doctor wants my husband to have X amount vitamin B, I could be giving him even more than prescribed by adding a snake oil that MAY have it. My husband has Lewy Body Dementia. They can have very bad reactions to certain medications. You can always ask your neurologist about these so-called medications before trying them. Good luck.

People mean well, and it is easy to give unsolicited advice under the guise of unexperienced "knowledge." I usually say thank you and never mention it again. Once I looked at someone who was annoyingly insistent that we NEED to try their suggestion and said, "While many miracle cures have supposedly emerged from this product, the research also proves that there also exists many disastrous results therefore until my doctor recommends this, I will not risk using anything else." That usually ends the conversation.
As my hubby's LBD is progressing, the only outside thing I have tried is CBD oil and that was actually recommended by a doctor as a possibility to help with aggressive behaviors - and there is a huge body of emerging MEDICAL research for using CBD oil for this reason in LBD (I am not sure about alzheimers). By the way, it has worked much better than any pharmaceutical for him. Everyone is different.
You are the one charged with the huge responsibility of making the best decisions for your wife.....it sounds like you are doing a great job during an impossible, unceasingly heart breaking time in your life. Continue to trust your instincts and know that you will make many, many mistakes, but you will also make life so much better for both of you by listening to your head and your heart.
God bless.....
Jan

@floridarick Hello - Mayo Connect is a great place to come with these questions - our large community of patients and caregivers can really give you "boots on the ground" support and advice. I think any diagnosis tends to bring a lot of well-wishers with their own personal ideas of how to "fix" ourself or our loved one. This is a topic that gets wide interest, and requires some forethought

The "Instantnet" ...er Internet, and Dr Google make everyone feel like they can do something to help by finding the one secret cure nobody else knows about... While it is awesome that they care, are you feeling like it's just too much noise in an already difficult situation?

So, sure, you don't want to miss something potentially valuable, but you also don't want to waste your valuable research time looking at junk. If you are already a bit of a research nerd and a skeptic, you have a great start on quickly winnowing down the pile.

First we know there is, as of now, no cure for dementia. So anything with the words cure, miracle, secret or conspiracy goes right in the trash.

Second, if the promoter is a Web Site or Facebook page, and the person who made the "discovery" is selling something, it's self-promotion - in the trash. The same if it is a published article promoting the discovery and printed in a small newspaper, magazine or newsletter - these are often sent out by promoters as "newsfeed" and grabbed by publishers to fill column space without vetting. Podcasts can especially be time-traps, because they get you listening and watching for the "seed" at the end - and you've wasted 15, 20, 30 minutes you could have spent taking your wife for a walk.

Third, be alert for the newest "feature" of many searches "AI Overview" and it's long-time predecessor Wikipedia. Here is what should follow and AI comment "This is for informational purposes only. For medical advice or diagnosis, consult a professional. Generative AI is experimental." And Wikipedia is a compendium of information added/edited by people who may or may not have expertise in the given topic.

Fourth, testimonials are just that - one person's experience. You have no idea what the backstory is, what else they are doing, even whether the cure continued to wok 2 days later.

Fifth if a report touts "research" or "studies" -look to see if they were done by or contracted for by the promoter or done independently. Independent reviews and studies must follow rigorous standards and disclose and potential conflicts.

So, what's a person to do? Put the proposed treatment into a different kind of search. Here are some I methods use to separate out the good stuff:
Use scholar.google.com and type in your search terms. If any scientific research has been done, you will see the results.
Use google.com or the search engine of your choice, but add "NIH" to the end of your search terms. You will be able to see if the NIH (National Institutes of Health) has accumulated any research on your subject. The MOST helpful of their reports are when a group of doctors or scientists search out any and all studies on a topic, then narrow them down to those which meet research standards and summarize the findings.
Use your search engine, but limit your reading to known and trusted sources - large and respected organizations like Mayo, Cleveland Clinic, NYU, American Lung Association...

I encourage you to ask, ask, ask questions of those in this forum who are living with the same situation as you and your wife - they will be your best source of information and encouragement. I have dealt with MCI in family members, and wish Connect had been there for us! And I am dealing (long distance) with MCI issues in my family right now, and know the bewilderment their caregivers are feeling.

One thing I "did right" with my Mom was to be present for her as much as I could, and enjoy our little moments For example, she could play a wicked game of cribbage right up to the end, even if she couldn't figure out how to use the microwave, and couldn't tell time. And a ride to McDonalds for a Filet o' Fish pleased her more than dinner in a nice restaurant.
Sue

Great feedback, Jan! Thank you. She'll be taking BUSPIRONE, and is on a few others, for HBP, etc. and I hadn't considered interactions with non-FDA approved so-called "remedies."
Rick

CBD oil...hummm... I've always felt like anything that works on everything can't be realistic. But I do know that MANY doctors suggest it. I thinks it's a no-harm-no-foul substance.
Thanks!
-Rick

The CBD oil took some experimenting. I used a few drops at a time, put in the side of the mouth, until we (our caregiver and I) found an amount that worked. He (caregiver) said he wished he had known about this with his former LBD patient...it has been a life saver and has, so far, kept my sweet hubby at home. If the aggressive behaviors had continued....I am certain he could not have stayed at home for his safety or mine. We had tried buspar, seroquel, rimeron, klonopin, xanax - and I am sure other meds that also had disastrous results. The hallucinations still continue but they seem to be calmer, and he is manageable. By the way, he was 63 when he was diagnosed and now he is 69. How I long for the days before the diagnosis when we were carefree and looking forward to years of travel, grandchildren growing up, and just laughing together on our patio.....now the days and dreams are quite different, yet I am grateful beyond measure to be on this journey to help and encourage this amazing man who I am so grateful to call mine..... ❤️

In the few months that we were trying to get a diagnosis, and for at least a year or so after, a couple of our children did a lot of reading and even attended an Alzheimer's seminar with me. They made some suggestions about certain books to check out, and most of them I ordered on Amazon and read, and learned a lot but looking back, the dementia caregiver in-person support group meetings had the most helpful suggestions and references. Important lesson was that even though there were a lot of things in common, every case has unique aspects and behavior challenges, and there will be an awful lot of trial and error. You need someone in your corner, even if it's just another person going through what you are.

Bless all of you! I’ve been using MAYO Clinic for the last 2 or so years ago. My family, mom and here 2 sister - 2 gone and have/had dementia (points & types of #1-#10) in my family.

12 years ago, I had a bicycle accident and, thanks to my wife and God Himself, moved to the very bottom of my TBI to the close-to-top, trying to become “normal” (ok, “normal” changes from one person to another & changes every person daily). cYes, my TBI moved a weakness of my brain and my memory, 12 years ago, was lost of my history of my family like Christmas, Colleges, and on.

I hope, on my brain weakness & my family uses of dementia, doesn’t turn from “normal” to this “sickness”.

Thank-you, Sue of what you written and your truth, I’ve seen part of this with my mom & 2 sisters.

Thanks to all,
Greg D.

"By the way, he was 63 when he was diagnosed and now he is 69. How I long for the days before the diagnosis when we were carefree and looking forward to years of travel, grandchildren growing up, and just laughing together on our patio..."
My wife just turned 66, and this is exactly what we are feeling and going through. The future is suddenly completely turned upside-down.

Then you know true love and true heart break......I have learned to treasure the moments that are rapidly declining- but the strength of love is amazing and..."Love bears all things, believes all things, hopes all things, endures all things. Love never fails...Faith, hope, and love, these three abide, but the greatest of these is love." I Corinthians 13: 7, 8, &13.
This precious reminder keeps me strong in the hardest of moments.
God bless you. Your wife is very fortunate to have you as her forever love.
Jan