15. Sense

The clinical trial on sensory stimulation ended a few weeks ago. I was supposed to go into Boston yesterday to return the kit and do my eight hours of testing. I was actually pretty excited to do that, despite not being sure I’d get to see the results. However, due to snow, that trip has been cancelled for a few weeks, so I still have the lights. I’m continuing to do the process - albeit not every day - which is bad. The other day, for the second time, I broke the rules, and rather than use a playlist I listened to an entire album. I’m going to talk about that album a bit - and about music in general because it’s such a healing part of my life. But I do want to postulate this question: If music is such a healing force, how come I have Alzheimer’s despite listening compulsively for so many years? I think after this morning’s session, I have a clue and yet another potential positive change to my life.

Today I listened, in its entirety, to the new album by Fractal Sextet (linked here). The band is the brainchild of Swiss mathematician, composer and musician Stephan Thelen and is released by the amazing Rare Noise Records (linked here). I am honored to count many of the principals of this project as friends (a few of whom, thanks to the wonders of the internet, I’ve never actually met). Sky Full Of Hope (an auspicious title for me if there ever was one), the Fractal Sextet album is an audacious, complex and beautiful collection of music performed by masters of their craft. Ridiculous and polyrhythmic time signatures groove their way around melodic guitar and keyboards creating a cohesive whole. This is not math rock or prog or jazz. It is music. There is no real hole to pigeon it into. Swiss Pianist Nik Bärtsch (not on this record, but who introduced me to Stephan’s music) refers to this music as Zen Funk or Ritual Groove Music. Watch this video for a more detailed explanation - direct from the source. Incidentally, the first time I broke tradition and listened to an album instead of one of my pre-configured playlists, was to hear Nik’s latest (here), which affected me and my lights) similarly.

The way this system is set up is that the output from my computer is split into two stereo channels. One side goes into my headphones and the other goes into the light controller. The light, generally, flickers in (close to) time with the music. It’s not perfect, but it generally works well enough. Until the first track of this album came on. Uneven has so many concurrent speeds and time signatures, I literally thought that my light would melt onto my desk (along with my head). That track is followed up by the title track, which has an absolutely beautiful descending chord progression on piano. Instantly grounding and allowing the lights - and my thoughts - to settle a bit.

So here’s the thing… While I’ve always listened voraciously to music, it - most often - happened while I was doing something else. Driving, singing along, reading, playing - no matter, just that it was a rare time that I focused entirely on the music - and even rarer that the room light was flickering in time with what I was listening to. And that’s the difference and a potential life lesson: One can not expect the full effect of anything if one does not throw themselves fully into the process.

I’ve thrown myself pretty fully into the process of healing (or at least not getting much worse), and intend to continue that for all the time I have left. Healing, right now, includes my infusions, Maounaro injections (for my blood sugar, but also showing positive effects on the brain), Rosuvastatin (anti-stroke but also shown to reduce brain inflammation and thus prevent Alzheimer’s), Lion’s Mane (of which I’m still unsure of), plenty of rest (despite often interrupted sleep), writing (this blog, Storyworth and more), reading and listening to music. I’m also working on a carpentry project, planning to pick and play up my new SG (Sorry I haven’t called yet, Ant), trying to socialize more and doing daily brain exercise games. Healing also involves trying to let go of the angst that has been my ever present companion since getting diagnosed. I’m working on that. It’s hard. Time is going to be the healer for me. Having the time and energy to do these things helps my psyche. So I will take the time. And know that it takes time.

I am also continuing to do research on novel ways to combat this disease. I believe the Light/Music regime through the clinical trial has helped, so I really want to continue doing it. I’ve just found the company that makes the controller on Facebook and reached out. Fingers crossed its available to the public - and affordable, however it looks, on deeper investigation, like the company (Synchrony LEDs) is out of business. Last FB post was in 2020 and their website is down. Perhaps another victim of the pandemic or tariffs round one. Getting a controller shouldn’t be an issue, though - It’s finding the proper lights. I’ve seen a couple of other gamma based lights that claim to help, but none that sync directly with music. They are more ambient in nature, but If I can’t replicate what I’ve got now, I’ll try one of these. The kit I have has multiple colors that change in time to the music, so this is really a completely different concept. There does seem to be a lot of interest in using sensory stimulation to combat cognitive impairment and I really want to play in that arena. Many of the clinical trials going on right now are concentrating on this topic. Of course, since I’ve just finished one, I think I’m not eligible - but I could try to reach out to determine what equipment they’re using or if they’d take me in. Other trials are medication based, which I won’t do right now because I’d have to stop Leqembi (at least 90 days before beginning the trial) and I’m not yet willing to take that plunge. So I’ll stick with whatever sensory intervention I can come up with for the immediate future.

I will not lapse into depression. I will not work at Wal-Mart. I will not go down without a fight. I will do everything I can to keep myself alive, and informed. I will not have an apathetic life or death! I will be engaged with what I do. I will focus on my life and the happenings within it. I will focus on myself and my family and friends. I will focus on my wellness and strive to get outside more (but I’m really cold all the time now, so it’s hard…) I will continually research treatments. When I can do something I will. When I can’t I won’t - but I’ll try not to belabor that. I will continue to try to make Wendy (who broke our hearts again the other day with her beautiful post) laugh. I will earn all of your support! I will actively listen (both music and conversation), watch and read. I will do my woodwork and play my instruments. I will not do nothing.

Finally, a heartfelt thanks to JG for the Katz’s gift basket and to those who’ve reached out with support.

Thanks for reading,

Dy.