V2.02 Kayaks, Fries and VR

It’s been a busy month here, but it all begins with a spot of levity. I mentioned that I had a speaking engagement booked in Lincolnville, ME in the last post. (I did it just this past week, and it went really well. It’s on the YouTube channel, and you can watch it directly here. (Incidentally, likes and comments on the youtube channel will really help me get the word out–and they give me a sense of what folks think about what I’m doing. I’d really be appreciative of that engagement, both here on the blog, on social media with reposts and the like, and on youtube. Those things, which seem trivial, is how work like mine makes it to a wider audience, which is really important for me. It’s how the algorithms work.) It went really well. I’m refining the work as I go.

The levity, however, is when I saw the flyer for the engagement, which was created by the Maine chapter of the Alzheimer’s Association. On it, they made a mistake on the name of the book, calling it Alz Fried Up!. I thought that was hilarious, and decided I was going to write a short story with that name (which I mentioned in the last post) about a McDonald’s worker with Alzheimer’s. It was going to be a funny story. I wasn’t sure what was going to happen, but I thought it’d be a quickie that would make folks laugh and I wanted to bind it into the hardcover of Alz Fired Up! as a bonus. Well, the story began writing itself, and before I knew it, it was a super heavy tale about the effects of the disease, a commentary on homelessness and isolation and more. Well.. That didn’t fit the book at all. So I decided not to bind it into the book, and instead seek publication of it elsewhere. I had my greedy eyes on the New Yorker magazine, which still publishes independent short fiction.

I put the writing of the novel aside while I was working on this. About 7,000 words into the story I realized that this tale was, in fact, the novel that I should write, and so I am, once again, relegating my main characters of that effort, who I created back in 2010 with no real story in mind, back to the drawing board as I attempt to flesh out the tale of the fry cook. I know exactly how it’s going to go. It’ll be an exciting, multi-perspective novel and I’m really looking forward to getting my fingertips dirty doing it.

I also had two other amazing speaking opportunities over a single (long) weekend. Wendy and I went to Cambridge, to address some of the scientists from Biogen. Biogen is a major player in the pharmacy industry, and they are one of the companies behind Lecanemab, which I’m sure you remember is the healing elixir that, until recently, was coursing through my veins. I love it when I can speak to (and thank) the scientists and researchers who are actively working on curing this disease. They’ve got stuff in the pipeline that sounds exciting. Earlier this month, they had been instrumental in connecting me with a reporter, who wrote this excellent article.

After that, Wendy and I went down to Cape Cod, and, after visiting with some friends, participated in The Washburn Challenge. We did the seven mile kayak around Washburn Island, and then I got to share the stage, again, with Dr. Daniel Press who is brilliant and has excellent taste in tattoos. I learn something new every time Dr. Press speaks.

The challenge is put together by a guy named Stuart, who lost his sister to the disease some years ago. He heard me talk at another event and asked me to come down for this one. It was great. I’m hoping to do more with Stuart, and the company he works with, UBS.

I’ve had conversations with several major financial institutions about the need to provide services to those diagnosed with Alzheimer’s (or another terminal disease) in an empathetic manner but also with an understanding of the trajectories of those diseases as many patients are truly unaware of what lies ahead of them. Also, as people with dementia, we often will rely on a proxy or DPOA voice, and it is important to ensure that everything is on the up-and-up. It would be quite easy to scam a person with Alzheimer’s. UBS is working on processes to educate their front line agents, and I suggested to Stuart that having someone living with the disease assist with the creation of those education materials would be a really good thing. There are laws, of course, regarding the financial exploitation of elders, and those with neurodegenerative diseases, but I’m sure it is a sticky-grey area that is difficult to prove and/or enforce. I’d be happy to be involved in a process that set out to ensure that financial managers knew some key warning signs to be aware of.

On a similar note, I was asked by a reader to point out that there is a bill currently being presented to the Massachusetts legislature calling for better oversight into personal theft of property. For example, if one’s grandmother, say, in the height of dementia was to “give away” a family heirloom to a neighbor who expressed interest, that could be deemed theft as the “grandmother” might not have been fully able to understand the gravity of that gift. Right now, there’s no law that covers that sort of behavior. Check with your state’s representation to see if they’ve got anything in the works. It’s important.

I’m just playing with a new brain/body game. My friends on Cape Cod introduced me to the MetaQuest, which is a Virtual Reality headset. The game I’m doing (Wendy is too) involves hitting colored blocks in the direction of an arrow. The blocks come at you in 3D (of course) and are generally in sync to the beats of the soundtrack. The physical side involves a lot of upper body movement, as well as full body dodging of obstacles. From a brain standpoint, you’re consistently evaluating which direction to hit the block, the timing, which side of the playing field, and more. It’s very involved. I’m sore. It’s working. I’ve moved more in the past few weeks from having this than I have in the recent past. And I’m kind of having fun. It’s way better than running nowhere on a treadmill. And the graphics and sound on this thing are fantastic. As I explore more games (and I’m not really a gamer) on this device I downloaded a motorcycle riding game. The graphic were so immersive I almost fell over when I crashed (immediately) into a wall.

It’s been a while since I’ve talked about music here, but I wanted to point out that the band All Them Witches, who I consider the best currently working American rock-n-roll band, just released their first album in six years. It’s called House Of Mirrors and it’s great. It is rare–extremely rare–that I listen to the same record over and over, and yet, this one can be heard multiple times per day. I’m going to see them in October, and am looking forward to it. (I saw them once before, with Jonas, on our epic Louisiana/Tennessee trip in May of 2024–just before I was diagnosed.) This is not a record that really breaks any new ground musically–it’s just a good, solid rock record with some great tunes.Those seeking adventures in their music might not enjoy this, but those looking for a good banging time most certainly will. It’s a blues based heavy rock record. The last track Saturn Song is as good as I’ve ever heard.

I’ve got a bunch of things upcoming including a conversation with Teepa Snow, a Lived Experience panel, more work on the Erasing Stigma Video, finalizing the book interior and marketing (it’s getting close!!!!) re-evaluating my book read sections and prepping for my keynote at the MAIA Conference in Evansville, which I understand will be webcast! It’s a really good kind of busy. In addition I’ve finally got my long awaited post-leqembi follow up with my neurologist, which I’m really looking forward to. I want to put some plans into place.

And that’s it for now…

Thanks for sticking with me!

Sean