V2.01: See, I Can Use More Than One Word In A Title!

Welcome to V.2 of the ALZBlog!

There’s lots to talk about and, for a change, all of it is good! So let’s get right to it, shall we.

I’ll start with a shameless call for help!

As I said in my last post, the book has been submitted. I’m just finalizing the dust jacket copy and marketing now. Things are moving forward, and I will have books in hand in August and I should have pre-ordering available in July. It would be great if readers (and their friends and family) pre-order the book once it’s listed as that sort of thing counts. Amazon is a good source, despite what I feel about them, they are, right now, the number one place people go for books, so the more pre-orders (and subsequently reviews) a book gets, the better it gets placed. When people who don’t know me search for books about Alzheimer’s we want them to see mine in the first few product returns, right? This is how it’s done. Pre-orders and reviews.

I’ve got the advance copy of the marketing material, and you can see (and download) it right here! If you want to get a copy at your local bookstore it’ll be available to order, but it would be great for you to ask them to stock a copy or two. Also, if you want to work with me to do a book reading wherever you might be, I’m happy to do that. This is my primary focus for the near future (while I also work on my next project, an as of yet untitled novel!). The trajectory of this work will be nearly entirely dependent on word of mouth. Any positive press helps. I’m happy to do zoom based interviews with any press - print, radio or television. Let your doctor know. Your therapist. Your friend with aging parents. Your fellow community residents. You get the picture. Speaking of pictures, here’s the cover again. Huge thanks to my buddy Susan for so clearly capturing my thoughts.

I’ll post information about the release here, of course, but for more timely updates, head over to the book site and sign up for the mailing list.

Then I’ll update you on current and some future speaking activity!

I’ve done several speaking engagements for the Alzheimer’s Association and for myself. They’ve gone really well (in fact I’ve had to have the proverbial cane around the neck to get me offstage a few times). I really love doing this stuff. A few weeks ago, I spoke at a senior living community that I had been at a year prior. In fact, that previous gig was my second speaking event ever. The lady who ran the event at the community, who specifically requested that I come back, told me that my growth as a speaker, my command of the stage and my overall level of knowledge was really impressive. I was really pleased, of course, to hear that. It really helps to have something you are passionate about to soap-box, and I sure do have that! I’ve got nothing on video of these last few things, but as I get deeper into book related activity, I’ll be filming nearly everything and posting it on the youtube channel.

I also had an amazing conversation with my new friend (and potential long-term speaking partner) Lisa, who has a really great podcast called Don’t Be A Miserable Cow. I’ve mentioned before that I met her while she was doing a book reading. Lisa lost her husband to Alzheimer’s and has done a miraculous job of bringing joy back into her life and chronicles that and the pain she went through and the joy she eventually found in her books and now in her podcast. It’s really compelling stuff. Our conversation was filmed, of course, and will be on her channel in (I think) late July. I’ll post links here, of course - but if you subscribe, you’ll be notified right away! We talked for over two hours - I’m not sure how much will end up on the cutting room floor or if it will be (as I suggested) a two part episode. I can’t wait to find out!

I’m now considering working with Lisa and our mutual friend John (who wrote a book on his observations as a caregiver to his Mother and as a frequent visitor to her memory care unit, and also read at the event where I met Lisa) and creating a team to go to conferences and schools (and science and medical centers, and senior care places and anywhere else that will have us) to share conversation on our three unique views of this disease. I think it will be compelling as all get out. They’ve both told me they were “in” on the project, so now comes the logistics. Here’s hoping for a nationwide tour in fall 2026! And thanks to Wendy for the idea and agreeing to be our booking agent!

I’ll be in Maine twice this summer, visiting friends and family. While there I’ll be doing some book reads and sharing the stage with the Maine chapter of the Alzheimer’s Association. The first will be in Lincolnville ME at the Historical Society on June 25th at 6:30PM. Thanks go to cousins Tim and Kim for setting this up.

Then I’ll be in Vinylhaven ME on August 13th at 7PM. Be advised, that’s after the last ferry back to the mainland so if you’re coming you’ll need to stay on the island (which is no bad thing). Thanks to Pam, Geri, George and Ed for helping set this up. And thanks go to Amy from the Association who, without even knowing me, agreed to upend her life and join me in these engagements.

The Keynote at the Mid-America Institute on Aging and Wellness conference in Evansville (thanks to Reagan, Kevin and Susie for this one!) is on, and there may be a radio interview involved with that as well. Once again, I’m astounded by the work that the University of Southern Indiana does, and am thrilled to be a small part of their orbit. Kevin, this is your public calling out to bring the trio mentioned above to campus for the 2026-2027 school year. Your students, faculty and community members will find it incredibly compelling.

Now, onto the medical stuff

I’ve started taking two new supplements, both of which I think are quite helpful. The first, which was recommended by my good neurologist (now ONLY neurologist) is called Huperzine-A and is derived from a Chinese clubmoss. It has widely studied cognitive benefits. The second, which was recommended by a guy from my Dementia Minds group, who happens to be a retired doctor and has Lewy Body Dementia is called Benfotiamine. This is a vitamin B1 derivative that is also being studied as something that might diminish Alzheimer’s pathology. Since I’ve been taking these two supplements I’ve been even more driven, focused and productive than before. I’m feeling really good about things right now. As always, check with your doctor before taking any new supplement.

I just got back from my second ALZ forum

In some ways this is a very difficult thing to write, because to be true to my mission as an advocate for the end of a disease, I need to be, and to remain, non-partisan. As I’ve said, the color of the Alzheimer’s Association is purple because it’s neither a red nor a blue issue. So there is much internal gnashing of teeth needed. A lot of Red State people (and congresspersons) are doing great work for my cause and I must be able to recognize that without ever appearing to approve the rest of the stuff they’re pulling. The fights I fight must transcend politics no matter how distasteful to me those politics might be.

If you remember, last year Wendy and I were invited by the public affairs officer for the Alzheimer’s Association, Lainey, to go to DC with them based on a twenty minute conversation. I’ve been waiting a year for this one to happen and it did, just this week. This year the primary objectives were threefold. You can join in and support this by contacting your state’s senators and representatves and urging them to sponsor and vote for these bills. You can do this quickly and easily by clicking here.

ASAP: The Asap act (Alzheimer’s Screening and Prevention) is fairly simple. In our convoluted system, medicare cannot cover a treatment unless congress gives them the right to do so. Even if that happens, they still don’t have to do it, and there are no specific conditions on how they do it. So the ASAP act is just asking congress to say OK. You can talk about covering the Alzheimer’s blood test for people who are asymptomatic as a preventative screening. Much like we do now with mammograms for women (which since enacted has saved countless lives and saved buckets of money). It seems like it should be a no-brainer, right? Early diagnosis leads to early treatment leads to less long term care. Right? Money saved in the long run. And who’s a better poster child for that than me? Caught early (despite the diagnostic lag time), treated quickly and currently thriving. Now, with all that said, there are still hurdles. Several of us had an impromptu session (because we shared a table in the house building at lunch) with Alaska representative Sarah Vance, a republican from Homer. She was quite pleasant and interested in what we had to say, but reminded us that many people in her district had to travel hours (by plane or boat) to get to a decent hospital for treatment and that, in fact, many did not even have running water. Obviously granting access doesn’t necessarily give access.

AADAPT: The Aadapt act (Accelerating Access to Dementia & Alzheimer’s Provider Training) simply aims to deliver dementia care and diagnostic training to practitioners in rural areas, often via remote learning (so not requiring any travel/time off). Again. Why not? There’s not a single advocate living with Alzheimer’s (the picture below is of the 4 from Massachusetts who attended the forum this year and are living with the disease)

who does not tell a horror story about their diagnostic journey. You all know mine, but if you need a refresher, there’s a (ahem) book coming out in August that I recommend. In my opinion, the two acts above should go hand in hand. If you don’t offer the proper training the screening won’t happen even if it’s available. You seem fine to me still seems to be far too prevalent these days, even in the “sophisticated” northeastern US where I live.

Finally, we advocated for continued financial appropriations for research on and development of new curative treatments. Again, that should be a no brainer. We got it last year, despite the uncertainty surrounding the heads of the CDC and FDA but the money we asked for did come through. So let’s hope it does again.

The main draw is the opportunity to go to Capitol Hill and meet with our representatives (or in many cases, their representatives). This year Wendy and I had four stops on our tour:

Senator Ed Markey was first. The senator has a direct connection to the disease and has often expressed support for the cause but has not, of yet, signed on to the bills. He is passionate though, and I’m confident he will eventually sign on

I mean, who could resist all this. Wendy and I were the story tellers for this meeting, but it was quite the competition, as Senator Markey is quite the story teller himself. Nevertheless, the meeting was good and productive - even though it would have been nice to walk away with a promise.

Next it was over to Senator Elizabeth Warren’s office. She wasn’t able to be there but her representative staffer, Gretchen Carr was attentive and did promise to get our asks over to the Senator.

I wasn’t involved, in a presentation sense, in this meeting, but advocates Adam (young onset, diagnosed at 50) and his wife Melissa, first time attendees, did a wonderful job with the storytelling. Many, including my wife, were moved to tears by it. Let’s hope that translates over to the senator and she signs on soon!

Next, we walked over to the house building on the other side of the capitol. Along the way, I saw a new sight. Manned machine gun turrets on top of the capitol building. This, my friends, is more than a little unnerving (as was the drive by sighting of the fight cage being built on the front lawn of the White House). The America I love does not have these types of things. I hope we get back to some sense of peace in this country soon. I’m not sure how much more divisiveness we can take as a nation.

While we waited for our meetings, we had lunch, and at the lunch the aforementioned encounter with Rep. Vance. From there it was on to Rep Richard Neal’s office.

I should mention that these two meetings saw the initial formation of the new Alzheimer’s Association Dream Team (so dubbed by me) of Peter from Worcester and me.

Peter’s advocating passionately on behalf of his dad. What right minded person could refuse two such hirsute beings on their quest for a cure?

I’m the Association’s ambassador to Rep. Neal, who wasn’t in attendance. We met instead with his Chief of Staff, Elizabeth O’Hara and his Senior Legislative Assistant, Abby McGovern, who we also met with last year. We did not go back onto the balcony for this meeting though. I told the story and Peter did the asks (along with another new advocate, Rosca). We made quite the team. However, due to the Rep.’s position on the Ways & Means committee, he could not commit to sign on to the bills, despite his staffers pledging his eventual support. I don’t know enough of the political maneuvering behind the scenes to further comment, but I do think eventually when the bill comes up for votes, we will have his AYE, and at the end of the day that’s what we’re going to have to accept.

Next up we went over to the Rep. that Peter is ambassador to, Jim McGovern, and there, in the very next office, we went onto the balcony! That’s Senior Policy Advisor Isabella Edo on the end and Chelsea Gordon, Director of Public Policy & Advocacy from the Association there with us. And always by my side, Wendy.

Isabella let us do our thing, with Peter telling his story wonderfully and me and Rosca doing the asks (also wonderfully) before telling us that the Rep had already signed on to our bills that morning! That’s a fantastic win for Peter and his team and for the country in general. Since the Rep was not with us for the meeting, Isabella asked if we wanted to journey down to the catacombs of the capitol building and say hi! We did, and so we headed down to the tunnels and met with Rep. McGovern in the hallway of the basement of the capitol building, which was a thrill and a half.

I mean, if my basement looked like that, I’d show it off too!

All of this was surrounded by the usual forum related pageantry and lots of food and the sharing of information. I met friends in person I’d never actually met before (Looking at you Linsey and Victoria from PA and Tonya from CT) and reconnected with wonderful folks I hadn’t seen in a year. It was a blast.

And then home. The very next day I spoke at the Western Mass Elder Care conference. I did my talk and the general Alzheimer’s Association info session because the person who was supposed to do it had car trouble. I was happy to pitch in.

And now I can rest! So I’m writing again. 🙂

I’ve started a short story which I’m hoping can be bound into the hardcover version of Alz Fired Up!. Still waiting on approval for that. It’ll be a neat bonus and hopefully an incentive for folks to spring for the pricier (but sturdier) edition. And speaking once again, of the book, I let my friends at Beacon40 know about the book because they’re in it some, and they created this: which I thought was really nice of them.

And that’s it! Thanks for sticking with me!

Sean