New CG, Question 2: SNAKE OIL?

Posted by floridarick @floridarick, Jun 9 11:56am

Hi. I'm new at this, my wife was just diagnosed with Dementia and we're testing for Alzheimer's.

As our friends and family learn about her diagnosis, I get calls, emails and texts saying something like:
"Hey, there is this new CURE, HERB, MUSHROOM, DIET, BOOK, PODCAST, EXERCISE, POTION. CHANT, or some other snake oil that will cure her." We know a LOT of people, and it seems like everyone knows something miraculous that I don't. A friend is in the process of mailing me some Lyons Mane mushrooms that I never asked for. Another bought me a book about reversing Dementia through diet.

I remind myself that these people love us and are only trying to DO something that will help for a disease that seems helpless. As cynical as I am, I think I should as least check all these things out - both out of respect for our friends, and because I don't want to miss something that really might help her, just because I am such a sceptic about such things.
I have a bit of a backlog of research already.

So, how have you handled these types of things. Unscientific, not studied by recognized institutions, and unproven - except through personal testimonials and "experience?" And usually, there is some type of medical or pharmaceutical conspiracy theory attached (THEY don't want you to know).
Do you believe in any of them ? Do you check them all out? How do you respond to those trying to help?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Hi @floridaricvk, I usedto be one of those well meaning types that subscribed to emails from every health practioner that was selling miracle cures. Now, I don't bother.
What I find useful is information posted by companies that review studies and summarize them, Examine.com is free, and you can subscribe for additional services if you wish. They don't name the actual brand of supplement/food.
There is also an independent third party lab that test products to see what is really in them and also publishes study results of various supplements, foods, etc. I wish I had subscribed to this service earlier. It is very helpful and I consult it now before purchasing any supplement.
@sueinmn made some excellent points so I won't repeat them.

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@tsc

Hi @floridaricvk, I usedto be one of those well meaning types that subscribed to emails from every health practioner that was selling miracle cures. Now, I don't bother.
What I find useful is information posted by companies that review studies and summarize them, Examine.com is free, and you can subscribe for additional services if you wish. They don't name the actual brand of supplement/food.
There is also an independent third party lab that test products to see what is really in them and also publishes study results of various supplements, foods, etc. I wish I had subscribed to this service earlier. It is very helpful and I consult it now before purchasing any supplement.
@sueinmn made some excellent points so I won't repeat them.

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Awsome Teri!! Thanks.

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I grew up with a mother that used every snake oil product that came along. I never noticed any improvement from any of those products and, frankly, they can be very expensive. I am still dealing with this "sage advice" from many of my LO's family. They are supporting all the supplement companies and manufacturers of these products.
Enough of my rant.
My approach is to listen to what they say, I even read the materials they send and then I do my own research. If the product they are recommending could be harmful to him, I let them know I will not be using the product and why. For instance, he is on a blood thinner and a couple of the family recommended supplements also act as blood thinners. Last year I had to take him to the ER because he was hemorrhaging and they took him off the second low dose blood thinner the doctor had given him. His urine was red all that night! I don't want to interfere with medications that are working and he is not a good patient. We have a couple of doctors that have taken us off most supplements. Many have sugars and/or other ingredients that can cause havoc if you have gastrointestinal disorders, diabetes, are on blood thinners, or have other health issues. He does take a vitamin B12 daily (Vitamin B12 deficiency is linked to impaired cognition and memory), a vitamin D3 to help with bone mineralization (he falls up to 25 times a year and he doesn't get enough sun exposure), and Areds 2 twice daily because this is highly recommended by his ophthalmologists for his AMD.
I have no experience with CBD oil but it does cause a few side effects, it can interact with other medications such as blood thinners and another cause for concern is the unreliability of the purity and dosage of CBD in products. If you are using CBD oil or thinking of using it, be extremely careful with how and when you use it and watch for side effects such as reduced appetite, diarrhea, drowsiness and fatigue. Also THC has been found in many of the CBD products. Long term use of cannabis or THC may be harmful and result in memory problems.

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In my opinion, I think my cousin's dementia got worse after her doctor approved her for medical marijuana. I think it confused her even more, although it might have made her feel good. I think it was a mistake. I don't know how much she took, she did take a month's worth of rx meds in a week, so then Dr learned to only prescribe a week at a time. I guess my thoughts is a vitamin might be ok, but I wouldn't take any herbal "remedies".....but just my opinion. She did ask me to bring scotch to hospital, and I said no, I just hope no "well-meaning" friends brought her any alcohol.

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@teacher502

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

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Thanks, Jan! Yeah, we know that passage and it does bring HOPE(which, when deferred makes the heart sick. -Proverbs 13:12). There are so many helpful scriptures! Plus, we're very involved in 12 step programs, and the many sayings that we've know for decades, even now, mean more to us than ever. We are so amazed at the many tools and support we have as we head into this new life.

Thank you for the encouragement!

Rick & Priscilla

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