“Very truly I tell you Pharisees, anyone who does not enter the sheep pen by the gate, but climbs in by some other way, is a thief and a robber. 2 The one who enters by the gate is the shepherd of the sheep. 3 The gatekeeper opens the gate for him, and the sheep listen to his voice. He calls his own sheep by name and leads them out. 4 When he has brought out all his own, he goes on ahead of them, and his sheep follow him because they know his voice. 5 But they will never follow a stranger; in fact, they will run away from him because they do not recognize a stranger’s voice.” 6 Jesus used this figure of speech, but the Pharisees did not understand what he was telling them.
7 Therefore Jesus said again, “Very truly I tell you, I am the gate for the sheep. 8 All who have come before me are thieves and robbers, but the sheep have not listened to them. 9 I am the gate; whoever enters through me will be saved.[a] They will come in and go out, and find pasture. 10 The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.” -John 10:1-10https://www.biblegateway.com/passage/?search=John%2010%3A1-10&version=NIV
Happy Friday to all, from those who love the blog to those who print it off for birdcage lining…I love you all! 🙂
I just had one small thought today and it relates directly to something I said in Wednesday’s post (found here) when I said “You MUST be careful when reading any article online that begins with or includes “new study” or “breakthrough” or “think of (problem X) in brand new ways” and the like… Just be careful, and examine the sources. Be skeptical, perhaps. Some would prey on people in desperate situations to generate website visits, donations, and the like. I know, I know…you are shocked. But it is true”
Whether you are newly being deer-in-the-headlights initiated (like I was a few short years ago and like everyone is at first) into the world of dementia, you are a bystander interested in helping, or an actual scientist, I expect that you will rightly start researching. This piece will attempt to serve as a guide for the good, the bad, and the ugly in this practice. I will also share some examples of good, bad, and ugly sources of information. 🙂 As a quick bit of overview of my feelings on this topic (and my conservatism may show like a slip hanging out from my dress here), I say again to be skeptical, but not dismissive, of the word new. In research, the term new is normal and offers promise and hope and encouragement that discoveries are imminent…and the term is great. 🙂 Don’t hear me wrongly here…we want new: new treatments, new approaches, and ultimately a new cure (where there is NONE now). We just want to be sure we vet the sources and study them closely before jumping in and trying it/spending money on it(!!!)/telling the world about it. The cure will someday soon, I hope, be new. It may be novel…something we had previously “never” thought of. It may not be that novel…it may be tweaking Aducanumab and blending in cod liver oil for all I know. (Editor note: I am very proud of myself for being able to spell and say Aducanumab now. See me spell and say it here…and here and here and finally here).
The Good– Good sources, AS A GOOD, GENERAL RULE, from the internet when talking about dementia (perhaps not other topics) end with .gov or .edu or SOMETIMES with .org. It is possible that the end with .com (signifying company). More specifically, I would look for NIH or Alz.org-sponsored materials (Alzheimer’s Association materials are always safe unless there are any unmoderated comments to their work). Honed even further, if you can find anything from the 33 ADRC locations, you are typically finding great stuff. These are the 33 that are the vetted ones and are your go-to places. Here is an article about the most recent 2 additions to this prestigious group. I subscribed to almost all of their email lists and try to hit several webinars a week, when possible, to learn more. I feel confident that any information you get from the sites (not always their commenters, but from their staff) is superb. I also review CDC info and several dementia advocacy websites. I really like the Alz.org Science Hub app. Here is that info: LINK. I also investigate several international schools because America is great, but we aren’t the only place with great research. One of these is in the University of Tasmania and I have referenced them many times. Here is their login link: LINK There are dozens of solid research schools and facilities internationally…just look them over closely.
The Bad- I think of the bad websites as, for the most part, “one trick ponies/ one string banjoes”. These have a specific slant that is only interested in one aspect of research and is typically pointed to their own product line. Websites that only discuss one aspect of care are fine as long as their content is fair and documented with references/citations where necessary. I assisted with a project called Safety in Dementia that falls into this category. I would consider it good because we cite our references and we don’t make claims… A lot of bad sites just shoot from the hip and/or all of their references are their own studies with little or no peer review.
The Ugly- There is a fine line between bad and ugly, but I contend to you that the love of money is typically the root of evil websites. Same with “cures”. Suffice it to say that any site that promises a cure is deceptive at best and an evil spawn of Satan.
Here are three links that show examples, some of which are worse than others, of scammers or badly misinformed folks. As a hobby of anger, I keep a running spreadsheet of false cures on my computer desktop as a reminder to fight bad info with good…
LINK (be sure to check the links on this site too…)
I am sorry that I can’t vet each website for you, but feel free to shoot me an email or text/call me (417-955-2513) with any you are in doubt about. Please know, though, that whenever a cure and/or a solid treatment is known, you will find out from every street corner. It will be worth (potentially) TRILLIONS of dollars. Trust me, when it is cured for real, everyone will know.
I hate this disease even more than I dislike folks who scam others…and that says a lot. Let’s fight to #EndALZ , hand-in-hand, until we beat it. Once we do find a real cure, let’s party and shout it from the rooftops. 🙂
Have a great weekend, friends. 🙂
Update: Visited mom today. She seemed like she was ok although she gave a grimace or two that gave me pause. She also smiled a little more and said a few words, always nice to hear, if sad. Next Tuesday is my next 20 minutes of visitation…
Runnin’ Til I’m Purple- I got the shell of the Runnintilimpurple.com website built and I went ahead and made it live while I work on it. I haven’t done any SEO work, so if you Google it, you will likely just find Digital Cornbread pieces…but that will come. Anything you would like to see on it? I run tomorrow night from 7 pm until 1 am, as mentioned before here, in support of a wonderful little local dog hospice (Information at the bottom of this post). It certainly tangents to our cause here because many, if not most of the dogs there are from seniors, many of whom are struggling with dementia. There is a good chance of rain too…so there’s that. Regardless, it will be a great training piece for me as I prepare for the run in June and THAT will be a doozy.
Still working on Aducanumab……