69: Focused

Like many of you, I am old enough to remember the dire warnings issued by John Connor in The Terminator, back in 1984, about the dangers of Artificial Intelligence (AI). Because (in part) of that movie, my relationship with AI is tenuous and generally untrusting. There is absolutely no AI in this blog, and there will be none in the book, ALZ FIRED UP! when it finally sees the light of day. And with all that said, I was eager to participate in an interview for the storied Boston Globe (which is behind a paywall, so you can read it on my Google Drive here) regarding the use of AI for the diagnosing of Alzheimer’s Disease. I reacted with absolutely no horror whatsoever when told that they are looking at scanning historical medical records to find things that might point to the possibility of an Alzheimer’s diagnosis in the future. As was reported in the article, I immediately said “I’d have been a perfect test case for that!”

Now, don’t get me wrong. This is a highly volatile topic, and the potential for mis-use of this data, especially in this age of profits over care is huge. But the flipside to this is that people could be put on lifetime-extending drugs, perhaps, even before they even reach the first stages of Alzheimer’s. That’s a big positive. Does it outweigh the risks in this day and age? We’ve already seen governmental and insurance overreach on a massive level. I won’t even submit myself to an online genetics DNA test due to my mistrust of what might be to come. So I don’t know. I’d really want to see some guaranteed safeguards in place well before the widespread use of this data. I would, however, submit my past data to be studied now to see if there were any missed pointers. I’ve already got the diagnosis, so why the hell not, right?

All this is just another fascinating example of the blinding speed in which science is being used to combat Alzheimer’s. God, I’ve been waiting for more than a year and a half to do that! But really, the things being done now are so awesome! A while back, I mentioned Focused Ultrasound as something I thought was cool. Thanks again to Rare Noise Records head honcho Giacomo for pointing this absolutely amazing stuff to me. (Incidentally, the latest Rare Noise release, Minutiae, by keyboard player Fabio Anile, who we’ve heard from on several albums already reviewed in this blog, is a wonder. I’m listening to it for the first time right now as I write, and really enjoying it.) Essentially, they’re using these focused waves to disrupt the blood brain barrier, which is the main impediment to making drugs directly impact the brain. This allows direct access. The studies linked show an amazing benefit. If used in conjunction with an existing amyloid buster, like Leqembi or Kisunla, there can be a 50% greater reduction and slowdown in accumulation of plaques. And now this technology has been approved to try to repair the damaged tissues in the brain. This, my friends, is pushing the boundaries of curative medicine. I, for one, would relocate to be part of these studies. I’m going to write into several to see if they’re still seeking enrollees. Check out a brief video here.

I had the privilege of going to the historic Massachusetts State House for a day of advocacy with my friends from the Alzheimer’s Association. I was honored to be on a panel alongside two doctors and two members of the Massachusetts governing body.

Unfortunately I forgot to turn my microphone on, so I have no recording (seriously, who lets a guy with Alzheimer’s manage his own tech anyway?) but it was an inspiring event. There were hundreds of purple-clad advocates there, and, like last year when we stormed Washington DC, we secured appointments with our local senators and representatives. I’d like to thank State Representative Mike Finn who has already written me to say he’s signed off on our initiatives,

and Caitlyn Letourneau-Jancsy, the director of communications for Senator John Velis who promised action on our behalf as well.

With us at Senator Velis’ office, was a wonderful young woman, aged 17, who is going to use her platform as Miss Western Massachusetts Teen to help champion our cause because she lost a grandfather to the disease. She runs a charity called Marshall’s Mission which aims to raise awareness about the disease. She’s the one in the sash and crown, if you were struggling to pick her out. Also, the rest of us are pushing just a tad past 17.

I also got a call from the folks at the Massachusetts Health Connector who run our state’s version (which was started by a Republican, Mitt Romney) of the Affordable Care Act, asking me to comment on my experiences with that service as they plan a 20th year celebration. I, unfortunately, can’t be at the celebration because I’ll be at the University of Southern Illinois. I’m really looking forward to that! I think this event is a great opportunity for me and for them. And that’s what I’m about. Mutual benefit.

I was also part of the opening celebration of our Walk To End Alzheimer’s. We had a lovely luncheon at one of my alma maters, the Holyoke Community College Culinary Arts Institute, prepared for us by student chefs and their teachers. This was the fundraising kick-off event, and I spoke about the reasons why the walk was important. The funds raised by the walk go, in part, directly towards the continuation of the clinical trial work that keeps me going, as well as towards enhancing care and support for those that keep watch over those of us who need it. Here’s a QR code that’ll get you right where you need to be!

Sadly, the project I was working on that applied to present at the Alzheimer’s Association International Conference in London, was, in part, rejected. We’ve decided not to break it apart, and to shop it to other forums that might be interested. The session was going to be called The Rising Influence of People Living With Dementia and Carers on Research, Clinical Care and Advocacy. Seems kinda right in my wheelhouse, no? We’ll find the right place for it for sure. It’s a necessary conversation.

I’m booking new speaking engagements, have nearly finalized the cover design for the book and am in final manuscript edits before sending the book out to an unbiased reader for commentary. And I’ve got the next book, a Novel, mapped out in what remains of my brain. My deepest hope is to have Alz Fired Up! In your hands within the next few months. I’m really excited for it.

That’s all for now,

Thanks for reading!

Sean