50: Lots

Wow! Post number 50 (It’s actually 51, because I started with post 0). Thank you all for being along for this rather tumultuous ride with me. As I’ve stated, reaching other people with this disease, and helping caretakers navigate this time in their lives gives me a real sense of purpose - and I couldn't do it without your support. So thank you again. I didn’t think that this was where I’d be, mentally and emotionally, when I started this project nearly a year ago, but I’m massively happy to be here now. In many ways, getting Alzheimer’s has given me a new lease on this life, which I am embracing to its fullest. But there’s always more that I can do.

It’s been an active time since the last post, with infusion number 23 happening, another shocking trip to the big(ish) city for round three of the DC stimulation trial (during which I pretended to be electrocuted when the researcher turned the current on and caused the poor man much duress - as I’ve stated, my maturity and sense of humor have not yet risen past that of a 13 year old) and an interesting pair of meetings - one on-line and one in person - with a young doctor who is looking to start his own trial using alternating current stimulation. Sadly, during the short week of our conversations, he lost all his funding and needs to start again from ground zero, but is using it as an opportunity to better his research scope and methodology by implementing an advisory board that I will be a member of. We had a lovely chat at a Starbucks right after the DC trial during which I expounded my rationality for doing advocacy work and for testing as many novel treatment ideas as I could. I sure do love getting on my soapbox it seems.

In that light, I’m in conversations with the Pennsylvania chapter of the Alzheimer’s Association to do some speaking down there, where I have family that I intend to visit. I’m also speaking at two different walk to end Alzheimer’s events (where I’ve been TOLD I need to keep it to 3 minutes or less!), but I want (need) to do more! This is an open invite to my readers to find me speaking gigs. (Also, I was just asked by a friend and blog reader if they could share this blog with someone they knew that was facing this battle. So, PLEASE! Share this. It’s meant to be a resource for anybody that might need it or want to see it. It’s public for a reason. Thanks!) It’s super important to reach younger people as well. I just found out that the youngest person officially diagnosed with Alzheimer's related dementia was just 19 years old. Advocating for younger folks to be aware that this is not just a disease of “old folks” and that working on keeping a healthy brain is statistically shown to reduce the risks of an onset is something that should be done. Hey boarding school friends? I’m up for a school meeting! Let’s get to educating!!!! Here’s a video of the last talk I gave, which took place at a Senior Center near me:

I’ve also been contacted by the wonderful folks at Beacon40, (who, by the way, donated quite generously to the walk to end Alzheimer's on my behalf - look for a raffle for one of their lights - donated to support my team - in the near future) for a conversation about creating some content for them. So look for more video morsels of wisdom coming from this camp in the near future, ‘cuz like, I’m gonna be an influencer now! In the short term, they’ve created a discount code for my readers, offering an unprecedented $80.00 off the purchase of a light. That code is SEAN80. Go ahead and get one. You can use the link to their website above. It’s an essential part of my self care routine and is based on the ground breaking work being done at Harvard and MIT. I like these guys. They don’t make any empty promises. This is not a cure, it’s just an aid for memory and sleep. And it’s a requisite part of my ever growing arsenal of tools for mental sustenance.

And, speaking of the Walk To End Alzheimer's, Team ALZBlog is doing a bang-up job with our fundraising. We’re not yet at our $20,000 goal though. And Wendy is still beating me in the individual fundraising sector. So one more call for donations. Thanks in advance. Every bit helps.

And also speaking of sleep… I’m in a quandary about the Inspire device I’ve been mentioning. The surgery is approved and scheduled, but I’m hearing so much about clinical trials and novel treatments that require deep MRI or electromagnetic pulses that I would be disqualified from if I had the implant. I’m also hearing about a very promising clinical trial that is in phase three now (near approval) for a sleep apnea pill! All this is making me question the choice of getting the surgery. It’s a drastic measure and will greatly impact what I can do from a brain health standpoint - and that’s the most important thing for me right now of course! BUT… a good night’s sleep is a requirement for brain health and its lack is a potential reason why one might get Alzheimer’s in the first place. So, it’s really quite the quandary. I know that I could be in a trial right away - I’ve already qualified (except for the prospect of the Inspire device implantation) for a TAO/PET study that I would join immediately. And then a friend and reader mentioned Transcranial pulse stimulation, which sounds equally (if not more) fascinating. I’ve invested so much of myself in the quest for an end to this disease that I am twisted by the thought of not being able to do something because of another choice I made. There are no open trials in my area right now, but I would want to be able to hop on one if it showed up. I did reach out to one place that is doing it today and am hopeful for a follow up shortly. I’ve also discovered that TPS is an approved method of treatment (not cure) for Alzheimer’s in Europe, and found several clinics that perform the service. It’s a two week course of treatment, so perhaps there will be a trip across the ocean in my future, once the Leqembi process is over. Yet another potential tool for the ever growing arsenal. Of course, if “they” could just find a cure, then all this would be moot, wouldn’t it! Perhaps a little donation to the walk might speed the process up, hmmmm?

In music listening news there’s something old and something new. For my morning’s light show therapy, I put on the seminal 1982 album by Material, Memory Serves. This is a record that knocked me off my feet back when I first heard it, and made me a lifelong fan of bassist, producer and overall legend Bill Laswell. You may not know it - but you’ve heard him, or at least a record he produced. I first heard him when I picked up a record called Temporary Music (compilation) because I went to high school with one of the players. (That was the beauty of record stores… One could pick up an album and peruse the players or lyrics and get full details. I had no idea what this sounded like - I just picked it up while browsing and saw the name Michael Beinhorn and bought it. Of course it helped that it was like 2 bucks or something like that.) To be clear, I didn’t know Beinhorn in high school. He was several years ahead of me but I knew his name, that was enough for me to try out his record. I loved it! Light years ahead of its time - and progressive in the truest sense of the word. Material’s second album came out shortly thereafter and I was hooked. Soon, the reason for my initial interest, Beinhorn, faded out of the scene (he’s still doing a lot of work) and I focused on the works of his partner in crime, Laswell. And that has kept me going for years. I want to say that I have well over 500 albums that Laswell (or one of his partners) played on, produced or wrote music for. So… Memory Serves, with its entirely appropriate (for this conversation) title is a punk album. Or a jazz album. Or a funk album. Or… Something completely new. The core punk-funk trio of Laswell, Beinhorn and drummer Fred Maher were augmented by some of the cream of the avant-jazz world. (This type of genre-bending musical swapping is a hallmark of Laswell’s creative genius - who else would think to put Bernie Worrell (from P-Funk), Ginger Baker (from Cream), Ryuichi Sakamoto (from Japan’s Yellow Magic Orchestra) and Jazz Legend Malachi Favors (Art Ensemble Of Chicago) on an album by the singer from The Sex Pistols?). And my god did it work on Memory Serves. Anchored by an impeccable groove that is completely danceable, but yet totally off-kilter in its own way. The record has twisted horn lines, skronky saxophone, and some unfortunate vocals. It’s a ground breaking effort that helped usher in the entire NYC “downtown mutant jazz” scene. And it was a completely mesmerizing morning listen under the lights! And, I might add, it was put out by a major label originally. Back in the days when experimentation and novel ideas were something the majors supported, rather than the benign formula that’s coming out under their labels now.

And then there was this massive undertaking, that I misunderstood when I first read about it. It is a 6 hour meditation on the effects of Alzheimer’s from one musician's viewpoint. When I first learned of it, I thought that the artist himself had Alzheimer’s and he was releasing an album a year to chronicle his decline (which I think is an amazing idea, and I jumped all over the record). Turns out, it is his impression of what Alzheimer’s is, which is far less compelling. It’s also musically fairly uninteresting to me - mostly cut-ups of old ballroom music, processed and treated. That concept of publicly curating one’s decline (see this artwork by William Utermohlen) still interests me though, as I had originally thought that this blog would chronicle my own journey as I degraded mentally. I still do - and plan to keep it as raw at that time as I do now - but thankfully, it’s taking on a life of its own as I exceed my own expectations for my health journey. Not a bad problem to have, I suppose, all things considered…

Wendy and I went to an interesting concert last night - Walter Parks & The Unlawful Assembly - whose repertoire consists (mostly) of reworked songs of the old south - slave anthems, gospel tunes, blues standards and jail songs - interwoven with stories of their creation and a reverent sense of the history of our country. He’s a modern day griot, keeping history (the often shameful history that also begot us some amazing music) alive and in the common vernacular, where it should be. Did you know, for example, that the song (hymn) Amazing Grace, a song we all know - no matter our religious affiliation - was written by a former slave trader who was repenting from that life as he realized that what he was doing was an abomination? I didn’t! But I do now, thanks to the storytelling prowess of Mr. Parks. We learned that enslaved people from the rice plantations in Georgia would actually flee south into Florida across the Okefenokee swamp because at that time, Florida was part of Spain, and the runaways were given sanctuary outside of Saint Augustine, an a place called Fort Mose (which is now recognized for that and is a state monument). I actually did, because I was a tour guide in St. Augustine for a bit of time just pre-pandemic, but still it was nice to re-learn that and hear songs written about the trials of the men and women who made the arduous journey through the snake and crock infested swampland to seek something better than the treatment given to them by their owners in Georgia. And folks, this is REAL American history, and should be taught and understood rather than whitewashed and celebrated. And folks who celebrate it should not be running our government. They already lost the civil war for crying out loud.

And on that note, once again,

Thanks for reading

Dy.