Posted 1/22/24
Wisdom is a tree of life to those who embrace her; happy are those who hold her tightly. _prov. 3:18
This is something I shared with my support group email group today, but it is worth your consideration as well. 2024, rightly so, is shaping itself into a year that could be called “The Year of the Blood Test” or “Diagnostic test” or similar in our little world. Science has figured out that it is CRITICAL to catch this disease EARLY…presymptomatic. For the new drug class (Monoclonal Antibodies)…and most of the ones in the pipeline…to have a chance of helping, that is the target. This is VERY EXCITING STUFF! Much like taking cholesterol drugs (and making lifestyle changes) before the heart attack, we will need to preemptively strike this dementia dragon before she stokes up his flames. Hence the many good products being tested, and likely the bad ones too, to help us fight…
Here is a brief self-study guide if you are going to brave the internet. Note, before I share this, that you are much better off talking to your PCP and/or Neurologist early and often. This self-study can be good, but it can also be bad. BE CAREFUL as you study knowing there are LOTS of snake oil salesmen out there selling cures that are actually just a cure for having a solid savings account… Regardless, if you are going to study what is out there in these tests, do it carefully and thoughtfully with this stuff in mind:
First of all…typically I read from the journals of various neurology/research/ADRC programs. Here is a list of the 30+ ADRC centers (LINK). Stuff DIRECTLY from them is always the best. Likewise, articles like the article that follows here is normally kind of pre-chewed food that is not often solid. However, this one draws from some solid studies and looks good in explaining the good, the bad, and the ugly:
https://www.cnn.com/2024/01/22/health/alzheimers-blood-test-screening-study/index.html
This site is only somewhat better despite looking official with the name, and they are pushing another diagnostic test: LINK
This kind of piece is probably the safest type to read as you self-study: LINK
Here are some examples of ADRC studies:
https://medicine.wustl.edu/news/tag/alzheimers-blood-test/
LINK or LINK (General) or LINK or LINK or LINK or LINK or this one about a specific drug
The bottom line: When looking through the web at where the science community is, get as close to them and away from interest groups as you can. Their sites are not always flashy like a typical news site. Sometimes that are kind of boring.
Other options to get a summary for self-study: The Alzheimer’s Association is the best (Alz.org). Alzheimers.gov seems good. There are a few large ones in the UK and other Western nations that look good too. Also, look for the sources at the bottom of the article and go directly there. Some scholarly articles cost to view 🙁 , but many do not. Straight from the horse’s mouth is always better. 🙂
Red flags:
- See a lot of ads? Be skeptical. Find things published by the university itself. WebMD and similar are OK for basics, but there are so many ads that it makes you wonder if the purpose of the article was to inform or sell.
- Over-promising in the title or subtitle?
- Content farm websites that try to get clicks
- Older is worse than newer…dig to see how old the info is.
- Large news agencies, as I mentioned before, can be good, bad, or ugly…but I see more bad than good.
- Political agendas- “This politician has the disease…here is how we know.” Both parties do it.
- Promises.
Speaking of that, as I have said 1000000 time…there is NO CURE as of 1/22/24. When one is found, we will all know. Put it through the “Rich celebrity who has Alzheimer’s” test. One of my very favorites, Bruce Willis, has the disease. He is financially loaded, and very, very sadly not doing well 🙁 . Don’t you think if a man worth in the hundreds of millions can’t find a cure, it is unlikely to exist? If someone promises a cure, or even a 100% effective, yet not FDA approved test, walk away. Better yet, run away.
Summary (since I already said Bottom Line and my accounting friends hate it when I use too many “bottom lines”): If you ever see anything you want me to see or evaluate, feel free to email it to me. I know a few folks at WashU and KU and other places that I could send the info to to get an opinion. We all desperately want good diagnostic methods, better treatments, and a cure. Don’t let this desperation cause you to make bad choices.
Be safe, all! 🙂 Study if you want, but know that there are perils and it is best to stay in the safe areas… 🙂
#EndALZ
Update: Mom’s new medicine has her very sleepy…even more than normal for someone who sleeps 20+ hours per day. We are working with everyone to slow down the speed of feeding and the size of each bite. I accidentally darn near choked her out the other evening with a too-big bite. 🙁 Slow and easy… Her drink is now pudding thickness/consistency. Rough feeding times, but we are at the end of our options and feeding tubes were explicitly declined by her last directives…