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

The ALZ Fired Up! website has a place for you to sign up to be notified when pre-orders go live. Or you can just watch this space. I’ll update and link it here too.

I’ve been doing almost nothing but writing this book for the past 6 months, and I’m really pleased with how it came out. I look forward to hearing your comments on it.

For anyone who wants a copy, it’d be really helpful for me if you bought it in a major outlet like Amazon and left a review. Unfortunately, reviews on Amazon are how books get placed these days, and I will be beholden to them for a time. As the book is self-published, despite being published by a “house”, it will not be on the shelves at local stores, but will be available for them to order if you want to go that route. The more order requests a store gets, the more likely they will be to have a copy or two on the shelf in the future.

I’ll be arranging book readings in the near future, and if you want me to swing by your neighborhood to do one, let me know. It’s another good way to get the word out. I’ll always have copies for sale at those readings.

****

When last we connected, over a month ago, I promised some updates as relates to my treatment and such so here they are.

I finished my first phase of Leqembi infusions in March. I spent nearly a month advocating for a PET scan so that I could learn how effective the drug had been on my brain during those 18 months of treatment. Suffice to say I was unsuccessful in that endeavor. Neither my bad neurologist nor my insurance company were interested in collecting any data, which, as I have said, is completely baffling to me, as is the lack of interest in that data from the drug company.

I was, on the recommendation of my good neurologist (and now ONLY neurologist!!!) able to avail myself of the brand new Alzheimer’s blood test. It’s called the Lumipulse G pTau217/ß-Amyloid 1-42 Plasma Ratio test and as of now, it’s still not approved by Medicare for use. Please help the Alzheimer’s Association lobby to get the ASAP ACT passed so that Medicare will cover this screening for everybody. I’ve done two videos on it, and they can be seen and shared via my YouTube channel.

In any event, I took the blood test and the results were amazing. They showed that I did not meet the plaque threshold for an Alzheimer’s diagnosis. This is huge. It means that the drug, along with all the other things I’ve been writing about here for the past nearly two years, worked!

It DOES NOT mean that I don’t have Alzheimer’s. I do. I am not cured. There still is no cure. And the damage done is still done. But what it does mean is that I have some space and time to look into some of the clinical trials and alternate treatments and not focus solely on this one causal issue. Plaques are not the only cause of Alzheimer’s, but they are the one that has been most focused on (some would say to the detriment of other research). So, my plan was to pursue other avenues.

There have been some really interesting medical advances pointed out to me, especially this one, from Cuba (can I say that?). It seems that the Cubans have several novel drugs which are unavailable to use here in the USA. One of them, NeuralCIM, is showing amazing results on people with dementia and might even have some of the restorative qualities I’ve been hungering for. The US policies on Cuba have been devastating to that once vibrant country (and this is not a pro or anti Castro commentary - but do think of the trade we, as a country, continue to do with other “communist” countries like China, Vietnam and Russia and question why we have been so draconian with this small island nation) and now we are actively denying ourselves an important medical breakthrough. Watch this quite informative video to learn more. The Cubans also have a cancer medication that has been proven to minimize lung cancers. Again, we don’t get to see or use that. Folks, it’s not just cigars, it’s life altering medication. And it’s people there we’re hurting.

As we know, I was already poking around at a clinical trial that was focused on brain inflammation (another potential cause). I ended up getting a quite specialized PET scan for brain-stem microglia to determine my eligibility for that. And I failed that too. So, right now, I’m ineligible for most of the trials that are out there. I suppose that’s a good problem to have, but I DO NOT want to become complacent. This is a feisty and cruel disease, and I don’t want it sneaking up on me in other backdoor ways. And the bad plaques will come back in time, and it is now my job to try and prevent that (or at least stay on top of it as best as I can). Another reason for the ASAP act to be passed is that I will want continuous monitoring of these blood levels, as I would for any other issue. One gets regular blood screening for cholesterol, diabetes, liver function and many other things. Alzheimer’s (at least for those of us who have been diagnosed) should be screened for on the regular too.

I also think the exosome treatments I did (mentioned a while back in post # 33 ) might have really done something. There are studies that show that these treatments reduce inflammation and plaque buildup. I’ve got no quantification of this, of course, but it is for sure being noted by me.

In the meantime, I’m adrift! I have no book to write, no infusions to go to, and at the moment, no trials to join. As I said, good problems to have, but I do need something to focus on. I’ll find it.

I still intend to be a strong and vocal advocate for the cause. In fact, I’m going back to DC for my second advocacy Forum in two weeks. I’ve become the Alzheimer’s association ambassador to my local representative Richard Neal. I was also just awarded Advocate of the month by the Alzheimer’s Impact Movement! Here is that article. I’m going to tour and speak the heck out of this book. I was just invited BACK to USI to be a keynote speaker as part of the Mid-America Institute on Aging and Wellness Conference in August. I’m really honored by that. (As an aside, Reagan, who is the student who set up this whole thing, has been given the USI Trustees Distinguished Merit Award. Read about her here. Congratulations are certainly in order.) And, of course, I’m still chairing the Walk To End Alzheimer’s committee and captaining my own team (with Wendy, of course). Donate here: http://act.alz.org/goto/SeanWalk

Oh, and I did promise to talk about this. Back in blog post #39 I discussed my discovery of a guy named Jordi Savall. Maestro Savall is a conductor and researcher (and performer) of early music. Wendy and I had a chance to go and see his group in a nearby town and it was a spectacular experience. With his ensemble, all playing ancient instruments, and his amazing group of singers, he guided us through an evening of music ranging from the lilting tones of medieval English music (think Monty Python’s renditions of the Brave Sir Robin Minstrels) to modern blues (albeit played on a medieval harp along with stunning vocals). There was an acapella choral moment that easily could have brought a person to tears. Really good stuff, and I’m so happy (and surprised) that this very short US tour came so close to where I live. As you know I’m a huge fan of merging musical idioms, and this was a stunning, reverent evening of that. Wendy liked it too.

And now, with 72 posts over nineteen months, and exactly one day over two years since my first visit with the bad neurologist that began this journey, I believe it is time to start the next phase of the blog and my life. The ALZBlog is not dead. I am not cured. The focus will need to be changed is all. So, I consider this the last post of phase one, and the next post, hopefully soon, will be the first (with a new numbering and naming scheme) of phase two.

In phase two, I hope to discuss the reactions to my book, my speaking, my efforts to find restorative medication, my advocacy efforts and the other productive things I will do (including the beginnings of my next book, which will be a novel!).

I cannot begin to express how important this blog has been for me, and how instrumental it will remain in my ongoing efforts to fully rid myself of this disease. I speak a lot about this in the book - so you should definitely read it - but this writing has been essential for my care, my peace and my finding of the joy that now permeates my life. It was (and is, along with speaking and advocacy) an essental part of my ability to climb out of the pit of dispair. I thank you for all your support over the past few years and look forward to continued engagement as I celebrate my success with treatment, writing and life!

This is not the end, it is only a new beginning, and I’m really excited to see where the road ahead leads.

As always, Thanks for reading!

Sean

Here’s why. I’m beginning this writing while on an airplane on my way back home from a whirlwind visit to the University of Southern Indiana. I went there at the request of a young lady I met when I spoke to the gerontological society a few months back. Reagan contacted me shortly thereafter and asked if I might be willing to come out to speak to the students at her school. I said yes, and we’ve been bashing around dates and itineraries and so forth for the past few months.

While I was at the school I came face to face with the next generation of doctors. These are all pre-med students, mostly Juniors, still deciding what track they want to focus on. But to a number, they were all bright, excited and most importantly compassionate and empathetic. They had not been trodden down by the medical-industrial-complex. And you know what? I have faith that they won’t be.

My generation has greatly screwed the pooch on this one. We’ve allowed big money to take the word care out of healthcare and replace it with a for profit assembly line of unimpassioned doctoring. However, USI’s pre-med program seems loaded for bear with young people who have the soul and desire to take back our lives.

The Bronstein Center for Healthy Aging and Wellness, under the tutelage of Dr. Kevin Valadares, Dr. Suzanne Leahy, and the amazing Gracie Money is fostering progressive and empathetic hands-on educational opportunities for young people.USI is the only university with a Minka Smart Home, which is an AI driven smart home designed to create an environment for aging people to maintain independence longer. I want to thank those three for the invite out there to speak, the thoughtful conversations and most importantly, for the work they are doing to make the world a better place by teaching young people to maintain their empathetic nature as they learn and grow.

And let’s talk about these young people. Reagan, Alayna, Amanda and Gavin, who are all members of Students and Elders Linking Around Relationships (STELLAR) did an amazing job of showing Wendy and me all of the construction projects in Evansville, the beautiful USI campus, and generally shuttling us around for two days. Props to Reagan for the side trip to the astounding USI softball field. It truly was an honor to see that! They also set the whole event up. Booked rooms, arranged for me and Wendy to come, did invites and marketing and generally devoted a lot of time outside their studies to making this work. All because Reagan heard me talk at the GSA conference last year.

Folks, these kids, besides being full time students, work in the field, participate in numerous activities, maintain friendships and generally are seizing life by the proverbial. I was honored to be a small part of their circle for a few days, and gratified that anything I had to say was deemed by them to be beneficial.

It was a great few days. I did three separate talks, including my grand unveiling (really the second read, but this one was not as part of any other talk. The folks that came for this were only interested in the book.)

Here it is (on my brand new YouTube Channel, where all my stuff will be - subscribe and enjoy):

I followed that (after a nice dinner at the Minka) with a guest lecture at the Deaconess Family Residency Clinic, where I spoke on the need for primary care practitioners to be on top of the whole of their patients care, even if they were (sadly) part of the current conveyor belt school of medical care that we’ve allowed our system to devolve into.

And finally, the main event was held that evening in a small auditorium, attended by nearly 100 students, family members and professors. It was a Q&A between Reagan and me, and Wendy joined in at the end. (For what it’s worth, I think Wendy should join me all the time. She has so much of value to add, and is such a powerful force. I’m grateful to her every day.)

I want to get personal here for one quick moment. I met a young woman at the event, a college student, who was recently diagnosed with Huntington’s Disease. I have so much to think about here. Huntington’s is the dementia that gets the young folks. It’s not curable, and must be a devastating thing to live with. Yet she was in school, coming to hear me speak, and is becoming an advocate and working with others with the disease. And I want to say this to her: Mariana (for that’s her name), you might not be aware of this, but you have a champion now. I am on your team. I have your back. Whatever you need, you reach out to me and I’ll do what I can to support you. Your presence is going to be felt in everything I do - and I will learn more about your disease and try to do better advocacy on your behalf. Thank you for taking the time to come hear me, and to come talk after. I wish we had had more time to chat.

I promised some other updates would be forthcoming, but I want this post to stand on its own, as it deserves. In rural Evansville, Indiana great things are happening. Great people are working to better our world, and for a far too brief moment, I was allowed to be a part of it. I will be forever grateful. Today, I have hope. Hope for the future of medicine, for our country and definitely for our younger generation to get out there and show us how to do it! Finally.

Thanks for reading

Sean

The first is that The ALZ Fired Up! Website has been completely revamped thanks to my super amazing volunteer web master, book editor, sounding board and long time friend, Susan. If you go there, you’ll see the cover design for the book and a sign up for info - which will just be book alerts.

The second is that my talk at the University of Southern Indiana next Tuesday will be webcast. Here is the needed info:

Topic: Alz Fired Up

Time: Apr 14, 2026 06:00 PM Central Time (US and Canada)

Join Zoom Meeting

https://usi.zoom.us/j/96393164954

And the flyer:

Remember, that’s Central Standard Time. Tune in if you can. It’s going to be a great one.

When I get back from the trip, I’ll do a full update, including PET scan info (none), advocacy stuff, the amazing Jordi Savall concert (he was first discussed in this post), several upcoming speaking engagements, book news and a report on my whirlwind trip to Evansville.

Gotta run! But thanks for reading!

Sean

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

I had my follow up visit, post infusion 39 with my prescribing neurologist. I was dreading it. Despite the amount of conflict I engage in, both as an advocate for myself and others, I really don’t enjoy personal one-on-one conflicts. However, my fears were not necessary. While gaining no real headway, empirically, I was at the very least listened to and not dismissed. While he still does not see the need for a follow up PET scan, he has agreed to submit to my insurance to see if they will cover it. I fear he will not imply the necessity needed to get the insurance to comply, but at least he didn’t fight me. He also, while not saying he thought it was a great idea, was supportive of my attempting the trial route instead of continuing on with monthly infusions, and even offered to help find some. So that was huge for him. At this point, I’ve agreed to accept the monthly infusions until I decide to stop, which seems like the prudent way to continue. Overall I call it positive. I spent more time with him than ever before - although it still wasn’t much.

Yesterday, I did my first solo gig, and while in general, it went really well, it was also a learning experience for me. I started it with a book reading, which I think, in retrospect, was a mistake. I didn’t “own” the audience yet, and because when one reads, there is no eye contact and there is a lack of fluidity, it was a stifled start. Book readings are good, and I will do them, but in context. With all that said, I did a whole hour by myself, and people, at the end, seemed to really take something from it. It wasn’t a huge crowd - maybe 15 people, but those that were there were engaged. There were some good questions, and off camera, I spoke with a newly diagnosed woman and her sister who was caretaking her. I hope they end up reading this, and I hope they stay in touch. They have a rough road ahead of them, as did/do we all.

So here’s the video of the talk - I finally bought a direct mic to the camera so finally, you can hear the videos well and there is no need for subtitles. I’m interested, because it was my first, in what you think I should alter besides the placement of the reading.

I’m now getting geared up to sit on a panel at the State House in my advocate guise as mentioned in my last post. That will be fun. I really like the panel format as I can capitalize on what others say rather than just spewing my own verbal diarrhea on my own.

Last night Wendy and I had the privilege of seeing Sue Foley, a Canadian guitar player do her solo show in honor of the trailblazing women pioneers of the guitar. It was a master class. She’s a phenomenal player, and the repertoire, consisting of covers of songs by Memphis Minnie, Sister Rosetta Tharpe, Maybelle Carter and more was great. Sue kept up a between song patter, telling the stories and history behind the songs and artists, while noodling on her guitar. And her noodling itself was phenomenal. Here’s a little teaser: Last Kind Words Blues (Geeshie Wiley) – Live | Sue Foley – One Guitar Woman and another: Sue Foley - “Oh Babe It Ain’t No Lie”/“In My Girlish Days”/“Maybelle’s Guitar” Great stuff. She’s promised to come back to town with her full band and we will be there for certain.

That’s it for this short update. Thanks for tuning in!

Sean

There’s still loads of uncertainty about what will be next on my agenda. I’m meeting with the bad neurologist next week, and I intend to demand a PET scan - I’m still amazed he doesn’t want to give me one - as is everyone else I’ve spoken to about it. I did have a PET scan for the clinical trial last week, but unfortunately the information gained from that scan will not be shared with me. I really do fail to understand the reasoning for that, but it’s pervasive in the trial world, so I am disappointed but not surprised. So next week I go to battle with the neurologist to get what should rightfully be mine. (God, I sound like a character from Game Of Thrones.)

The final infusion was as near perfect a send off as could be. Two attempts with the IV needle drew immediate blood but no flow, so had to be scrapped. Enter nurse two who hit me perfectly. Forty minutes later when the meds started to flow, the needle was no longer in the vein, and so that had to be scrapped as well. The meds were shut off and disconnected. All the nurses in the infusion center (who are uniformly great) knew it was my last (hopefully) visit and so we all addressed this with the humor it deserved. Onto the next nurse and the next arm and finally on the second stick we hit a gusher and all proceeded normally. Except, the nurse forgot to plug the meds in, so I sat there a few minutes, laughing about it, before we all got it together. Make no mistake here, I’m not complaining. It was a farce, and I was happy to be part of it. I appreciate good cheer and good effort, and would come back to the facility if I ever needed to. It’s just a funny story at this point.

So, like I said, I don’t know what’s next and I need the PET scan to make the decision. I could end up taking the Leqembi maintenance protocol, which is monthly, I could end up on the Leqembi home shot, I could end up taking Kisunla, which is a similar drug to Leqembi, or I could abandon the whole Amyloid Plaque hunt for different causes, of which there could be many. Like AIDS in the 90s the root causes of this are myriad and so I believe the eventual cure (if it’s even that) will be a combination of efforts. No matter what happens, this is a big deal.

So what else? Wendy and I flew to Anaheim, where we were honored to be invited to the Alzheimer’s Association Community Leadership Summit. This was in recognition for our (and your) work on fundraising for the walk last year. Um… This year’s link is: http://act.alz.org/goto/SeanWalk. Donate early. Get it done! :) I made my first donation just now. Literally. Wendy and I are actually on the Walk committee this year, so any good fundraising ideas would be welcomed! The summit was a glamorous (perhaps too glamorous?) event, with some education, some good speeches and lots of good camaraderie. A long way to fly for a short event, but still, we’re glad to have had the opportunity to go.

Turns out I’m going to have another round of prostate surgery in a few weeks. I had a procedure about 2 and a half years ago that wasn’t quite sufficient. So, not looking forward to that at all. To the end result, maybe, but not the procedure and follow up at all. I do not have cancer though, just standard old man enlargement. So that’s good.

The long-in-the-planning speaking event in Pennsylvania at Masonic Villages in Elizabethtown finally happened. Here’s a youtube link to the whole thing. If you want to see only me, skip to about the 23 minute mark.

It went really well, and was the largest audience I’ve spoken to thus far, well over 100 people. I guess I’m not too far from a headline stint at Madison Square Garden. The Masonic folks were great, as were my new friends from the PA chapter of the Alzheimer’s Association - and a special shout out to George, the Masonic walk coordinator, who spoke well and is doing great work there.

In other speaking news, I’ll be doing my first solo event at the Hadley (MA) Council On Aging, which is called Living Well With Alzheimer’s. https://www.hadleyma.org/council-aging/events/189246. I’ve created a slideshow (for grounding) and will read a bit from the book (which was already in the blog from days of pain - 9: Tolls). More on tolls later…

I’ll also be speaking at Advocacy Day at the Massachusetts state house.

I’m truly honored to have been asked to be a voice for the many who are affected by this disease.

And finally in speaking news, I’ll be a speaker at this event:

Which also happens to be my 29th wedding anniversary and the day before my prostate procedure.

And, speaking of tolls, I went to a book reading this past weekend, put on my a colleague of mine (we were on a podcast together back in July - linked in my fictional clinical trial post #49: Shocking). The reading featured 3 authors, two of whom had direct experience as caregivers to a dementia patient and one who lost a friend to the disease.

John D. Scully wrote a book called Visited Mom Today, and he read a few vignettes and spoke of life lessons that he’d learned while speaking to the denizens of the care home where his mother lived out her last days. He had some valuable information to impart, which will help us in our current dealings with the relative that we care for. He’s really the reason (and Tonya, who couldn’t be there) I went to the event. John and I spoke about publishing and he had some great advice for me. We’re going (I hope) to team up on some readings in the future.

The second reader, Judith Podell, wrote a memoir called Monkeyface. In it, she writes of her 50 year friendship with a woman who, towards the end of her life, slowly succumbed to the embrace of our friend Alzheimer’s. The thing that struck me most about her reading - besides the fact that she’s a witty and articulate person - was one offhand comment that aligned me with her. When speaking of her friend’s slow descent she said, and I’m paraphrasing here, I wouldn’t want that for me. If that happens I’m taking care of it on my own!. And you know that’s what I think.

And now we get directly into the tolls, as writer Lisa Marshall tells us in her memoir about losing her beloved husband to early-onset Alzheimer’s in his mid 50s called Oh, Hello Alzheimer’s. What a profoundly moving thing it was to watch and hear Lisa speak so bravely about her loss and how she rose from the pits of despair to try to find some joy again in her life. She wrote about that too, in Find Joy, No Regrets. Thing is, as Lisa spoke of her loss, and the pain inflicted on her by watching someone she loved succumb, it reminded me of my post on loss - or specifically a single part of it which I’ll quote here:

“Alzheimer’s, as we know, is a disease that comes pre-packaged with many hefty tolls. Not only the toll of slow mental decay leading to inevitable death, but the toll of planning for it - of existing with it- of inflicting it on your loved ones - of knowing that it, above all, is all there is going to be. And that’s just on you - the afflicted. The toll on those who love that person might even be higher. [...] For those, there’s the unenviable toll of watching all of this happen - of dreading the outcome - of trying to continue to live life and be positive - of maintaining function in a rapidly devolving existence - and of trying to soak every last good bit out of your life and love - and of knowing that eventually, inescapably, you will bear witness to the death of someone you hold dear.

There will be the toll of maintaining a relationship with someone who will slowly forget who you are and what you’ve meant to them. The toll of distance, disregard and of a vacant smile of greeting that could be issued to just anyone when your entire world is shattered. The overwhelming toll of rage - at the world, the deep injustice of it all - the process - at your love for getting sick in the first place - at yourself for not doing more - at science for not finding a cure - at moments missed - and that this is how it all will end. And there will be the toll of songs that remind, of memories past, of seeing unread books, and unwatched shows.

There will be the toll of becoming a caretaker of someone who once was a full partner and of battling with medical, financial and insurance organizations. And overwhelmingly, the toll of loneliness and isolation - or visits with somber overtones. Of, potentially, a stranger living in your home providing the care for someone you can no longer manage - or of needing to schedule visits to a sterile facility where that same person is finishing out their days - mostly alone”

The things, the feelings, the pain she expressed were nearly verbatim to what I wrote, back in October of 2024, just three months after I was diagnosed. She wept still, as she read. And while she is now happy and in love again, the pain of her struggle remains - because, as I’ve said, it’s not the death that hurts so much, it’s the events that this particular disease fosters that destroys the soul of the spouse-caregiver. I’ve been struggling to come up with the proper word for that person and I believe I’ve found it within the Finnish language: Sisu, which refers to a “stoic determination” and grit in the face of hopeless odds. It describes a spouse who continues to care and love not because they expect a recovery, but because it is their nature to endure the pain of the loss. Lisa is sisu. Wendy is sisu. Lisa has started a podcast called Don’t Be A Miserable Cow, and she’s asked me to be a guest, and I’m very much looking forward to that.

In book news, my editor (and good friend) is suggesting a complete restructuring to make it a more cohesive read. I don’t disagree with her at all, but that doesn’t mean I’m looking forward to that work. But I know I’m in the final stretch of it here, and the next step will be getting it out to the world. I’ve decided that self publishing will be the way I do this - I don’t have the time to wait for a publisher to want the book and then fit it into their schedule. Now’s the time for this - for me and for the disease. So I hope to have it out to the world by summer. I’m going to start doing public readings. I’ve created a 15 minute reading out of parts of the book and I think it’s pretty compelling. I’m thinking of libraries, churches (if they don’t burst into flames when I enter), bookstores, community centers and the like. If anyone wants me to read near them, let me know. Have words will travel.

Thanks for sticking with me,

Sean

Today, I’m writing this from chair 10 at the infusion center. As the title says, after today, I’ll have only two infusions left. This is number 37! As to what happens next, I don’t know yet. The reason for that is this: The initial course of treatment for Leqembi is supposed to be 39 infusions. One every two weeks for a year and a half. After that (and forgive me, this has all been said, but bears repeating) Leqembi suggests a maintenance dose - once per month. All well and good. Except for this: I’ve been hearing stories of people having complete remission of Amyloid after the first course. If that’s the case, then why would you stay on a medicine dedicated to removing those plaques? My good neurologist told me that the competing drug, which operates in much the same way, did a trial that showed that there was no real benefit to the maintenance dose. So I’ve been thinking about all the research being done that supports other factors being part of the cause of the disease like inflammation, Tau proteins and more. And because it can take a decade or more for plaques to build up, it has seemed to me to be logical to try new therapies and clinical experimentation. (I’m doing one now for inflammation, which can be done concurrently with Leqembi.) All good, right? But only if there is no plaque left after the first round of treatment. So. Every single person I’ve spoken to who has completed their Leqembi treatment phase one has had a PET scan to see what the status of the plaques in their brain is. Right? It’s only logical. Why would a patient, doctor, drug company or insurance company not want to know this crucial information?

OK, so the reason for the rehash of this previously vented spleen is this: As we know from a much earlier post, Wendy was involved in a rear-ending hit and run accident (over a year ago). Despite being told by her insurance company that she was fine, she’s not. And in the past 6 months or so, she’s started to get cervicogenic headaches, which are debilitating migraines caused by the neck trauma (and remember she had spinal surgery just below the neck about two months before the accident). As a last ditch effort, she made an appointment with a neurologist (the same neuro who diagnosed her spinal tumor and my Alzheimer’s). I’ve had lots bad to say about him in this blog, but never once have I maligned his diagnostic curiosity or prowess. He is exactly the right guy to see in this case. <cue eerie foreshadowing music> But he is not the guy when you want to try novel treatments! Or if you want to see what’s happened in your brain in the last year and a half apparently.

While Wendy was in with the doctor, I had a moment to chat with his office manager - and asked him two questions: The first was if they thought I’d be a candidate for the Leqembi home based subcutaneous shot that has recently been approved by the FDA. The answer was probably not, because of insurance hoops (despite it being more cost effective. It’s odd, isn’t it, that an insurance company would put roadblocks in place for a less expensive treatment). The second question was whether they had put in for my PET scan yet. I have an appointment with the doctor scheduled after Infusion 39, so I had been, naturally, assuming that sometime between the last infusion and the appointment I’d have a PET scan, and my schedule is filling up, so I wanted to get it in the books. I was told that they do not do PET scans after completion of treatment. That’s all. (Now, I’m going to put my fair hat on, and say that I did not have this conversation with the doctor, only the guy who’s responsible for all the scheduling and insurance communication, so there’s a (slim) chance he was misinformed. And because of that (slim) chance, I wrote a message to the doctor via the portal 5 days ago. I’ve heard nothing yet.) Now, because I’m Alz Fired Up! I have other resources. I’ll be getting a PET scan as part of the clinical trial I’m doing, and they’ve said that they might be able to share that data with my good neurologist (I won’t even bother with the other guy, because he’s not interested), who will then help me make informed decisions about my freaking life. If that doesn’t work, the good guy said he’d put in for a PET, but that would force me, if I still had plaques, to continue my treatment elsewhere because he can’t write a script for me locally. (He did seem to think that he’d be able to get me the sub-q shot though) So, I’m confident that I’ll get the data that I need - but I’m going to have to work for it, which is so completely not appropriate that I’ve been living in a mildly outraged state since finding out. I also might have to make important decisions before I have all the data I need.

Now, one of the things I’ve been doing recently is speaking as a person who is living with Alzheimer’s at conferences and community events. I’ve got two coming up, one of which is the previously mentioned (and rescheduled due to a massive snowstorm) talk in Pennsylvania in partnership with the Alzheimer’s Association. Here’s the article about that. Thanks again to Masonic Villages of Elizabethtown for working with us. Also coming up is a web symposium that you can all sign up for if you like.

The National Alzheimer’s Buddies is an organization that pairs college students up with dementia patients for weekly visits. This helps them with the feelings of isolation and loneliness and increases activity and socialization. Good stuff. They’re having their annual symposium and have asked me to be on a panel to talk about the stigma of the disease. Here is the link to sign up. It could be fun.

It’s also looking like I’ll be heading out to Indiana soon to speak to a group of students about the needs of people presenting with Dementia. (One of those needs is the for accurate and timely information.) The Kinney College folks are great, and this, which is a student led initiative, is a great opportunity for me, and for them as well. This educational model seems like something I’d really like to pursue more.

I met, online, a guy named Sam who, much like me, has decided to get out in front of his disease. He does it by performing a play which he wrote. He’s also written a book. We had a great conversation. He can be found at his website here.

Finally, later today, I start my journey with Dementia Minds, who (among other things) put together small groups to share the lived experience. I’m curious to see how this works out.

As for the book, I’ve broken the 50,000 word barrier. I am getting to the point where I need to really look at the placement of what I’ve written. There could be a lot of editing ahead, but it’s going to turn out really well in the end! I’m really excited for you all to see it. I’m thinking of doing some readings - maybe even starting at Kinney College. I’ve got a chapter devoted to the health care industry that might be appropriate.

And that’s all for now. Thanks for reading,

Sean

6:30 AM. The alarm rings its shrill, robotic tone, and I roll over to hit the snooze button. Besides me, Wendy stirs and grumbles her way into wakefulness. I rub the crusties from my eyes and sit up. Stumbling to the bathroom I splash water on my face. Something is odd. I can’t get the morning goop out of my right eye. My vision is blurry and something feels wrong. Knowing that I work at a residential boarding school (not one of the residential schools that they forced the native and first nations people to “attend”, but an upper crust high school where kids wore jackets and ties, and went on to ivy league universities) I presume that there’s some sort of eye-rot-fungus-pink-eye type thing going around, and I decide to call the health center to get some cream or drops or gel or at worst case, an antibiotic. I wasn’t alarmed - these things happened on the regular. The joys of living with and working around teenagers.

I grab my coffee and get dressed, still attempting to wipe the sensation of goop from my eye to no avail. Walking over to the health center, hoping to avoid the morning rush of students, I looked around at the beautiful campus I was blessed to work at. We’d weathered the non-existence of the global “calamity” that was Y2K that past winter (OK, that was just to give you an idea of when this is taking place), and all our computer equipment was humming along nicely. It was a beautiful spring morning.

I sat with our school doctor, and he used his silver light magnifier thing to look into my eye and he said “I think you should go to an ophthalmologist. I really don’t see any sort of eye-rot-fungus-pink-eye type thing. You could be getting a cyst or sty or something like that. Most likely they’ll tell you to keep a warm compress on it, but I’d get it looked at just to be safe.”

Now, in contrast to every other medical appointment mentioned in this blog, I am able to get into a local eye doctor that same day. In those days, remember, medical care was still readily accessible, cost effective and quite often, delivered by pleasant caring professionals. So, I call out sick, and drive myself, vision issues and all, into the next town to see the doctor.

I’ve never been to an eye doctor before. My vision has always been stellar - no glasses needed and no real trauma to report, so I am unfamiliar with the process. The initial exam went smoothly, with lights being shined in my eyes, and eye charts being read (well in one eye, not so well in the other). The doctor sits back in his chair and says “We need to dilate your pupil”. I think back to my high school days when having dilated pupils could get you sent home from school - for a myriad of reasons, all of them drug related, and am glad I called out of work. So, the drops go in, and lights are shined and a magnifier is used, and hmmms and harumphs are uttered. When the doctor was done, he turned off all the lights and said “I need to take some pictures of your retina. I’ll bet you thought I was going to tell you that you had some sort of eye-rot-fungus-pink-eye type thing and offer you some cream or drops or gel or at worst case, an antibiotic. I promise you, that’s not going to be the case today. You’ve had what we call a retinal vein occlusion. This is when a calcium deposit somehow makes its way into your ocular system and clogs a vein causing a blood flow stoppage. This, in turn, deprives your tissue of much needed oxygen, and it dies. I need to get some photos to see just how bad it is. I want to warn you that when I take the pictures, you’re going to be injected with a dye, and the dye will make you feel like throwing up. You haven’t eaten recently have you?” I hadn’t. So we went ahead with the pictures. Again, right away. No new appointment needed, no check for insurance coverage - just the care that was warranted being dispensed as it was needed. I do miss those days.

I’ve gotten to the important stuff already in this story - but I’ll add in, for the sake of transparency, that the photos showed a pinpoint scar dead center of my right retina which has, to this day, made my vision in that eye useless. I describe it as opening one’s eyes in a pool. You can see light, vague shapes, motion - and given enough time, might even make out a who or a what. But as for usable eyesight, it’s useless. Books are a blur, road signs, the same. Even faces are difficult to make out. However, over time, the brain - which is a completely amazing thing - learns to compensate for the loss of vision, and what was, at the beginning a constant headache, mind warping pain with frequent floaters and even a hemorrhage in the middle of the street one night has become something I don’t even think of any more. In fact, I rarely mention it as a past disease or trauma. This will become very important to this story. (It comes to light at the DMV, where I have to prove I have depth perception (I do) and good peripheral vision (I do). I cannot, though, read an eye chart with my right eye - although I do just fine with both eyes open. As I said, my brain has compensated really well. This has only ever caused problems when I moved, briefly, to California. They require a one eye closed eye-chart test, which I could not pass. This meant I needed a doctor’s note and I had to take a road test - both of which I got (although it took months to get the road test scheduled - almost like trying to get into a doctor these days).

Funny aside here: When I lived in Jordan, I had to get a driver’s license there. I went in for my eye test (in this case, because I could not read any Arabic, the charts were stylized U’s pointing in different directions, and the task was to raise my finger in the direction of the opening of the U (because the test giver couldn’t speak English any better than I could read Arabic). I had a translator who explained that I had had some “trauma” in my eye and so the gentleman giving the test, laughing, referred to my eyes as “Super Eye” and “Trauma Eye”. And while I had to do the test one eye at a time, he gave me the answers in my Trauma Eye so I could pass. And to this day, twenty years later, I refer to my bad eye as “trauma eye”.

And now, to the reason for this tale: Yesterday I did a zoom event for the Pennsylvania Department of Aging, The Alzheimer’s Association and Dementia Friendly PA called Virtual Alzheimer’s, Dementia & Related Disorders Symposium - Navigating a New Era of Dementia Care: Treatment Breakthroughs, Brain Health, and Caregiver Support. One of the speakers was a doctor, and he, as he was finishing off his segment, mentioned the changes in cause over the last few years. The things that had been learned in order to provide some form of preventative prediction. He went through the usual: Food, exercise, socialization, etc. and then said: “And just the other day, a report came out stating that Retinal Occlusions could lead to Alzheimer’s! Consider my mind blown. I’ve had hundreds of conversations with doctors, and I almost always fail to even mention this episode, because I am so adjusted to the new normal and it is completely healed. I don’t even think of it - the only time I notice it is when I’m scratching my nose on the left side - thus blocking the vision, and everything goes wonky.

In any event there was an article published on January 8th called Eye Vessel Blockages: Early Warning for Alzheimer’s Disease? This study postulated that people with retinal blockage were nearly two times more prone to getting Alzheimer’s than others. In my book, there’s a lengthy bit where I talk about the potential causes of Alzheimer’s and also all of the misinformation surrounding both cause and cure. I’ve mentioned it here in the blog as well. So while this information doesn’t actually change anything for me in the present, it is something that people who have these eye issues can then become on the alert for. The more precursors the science folks discover, the more likely it is that we can start the process of ending this scourge.

And with that said, I want to welcome the new readers of the blog, many of whom signed up at the aforementioned web conference. I hope you enjoy the reading as much as I’ve enjoyed the writing. If you haven’t yet dove into the pit here, and this is your first live update, I suggest you start right from the beginning. It’s really a good chart of an interesting journey.

Also, here’s the full video of the event on the 9th of December in Marlborough MA, pro shot. I come in at about the 41 minute mark, but the whole thing is good!

For those of you in research and care, keep it up! You’re doing great work, and I - for one - salute you and all your efforts.

And thanks, as always, for the steadfast readers, for being along on this journey with me.

Next up: Live in Elizabethtown PA on the 27th, and then in Hatfield MA on the 29th.

Sean

A few items of interest.

• I DO NOT have Tuberculosis. That really shouldn’t come as a shock to anyone. What DID come as a shock was the positive TB test result from one of my blood tests for the clinical trial. I’ve had the test done twice since, and both times it was negative, so I’m clear. To be fair, it was never showing that I HAD TB, just that I had been exposed at some point, which might have been the case because I’ve lived abroad and travelled extensively, but even that has now been ruled out. So lesson of the day… Second (and even third) opinions are good!

• The speaking bookings keep a-rolling in. I’m super happy about that. Here’s a reminder that if you want to, you can register for one here:

  https://us06web.zoom.us/webinar/register/WN_yx-DOwasROaLHhY1PUZhUA

  It’s called Reimagine Alzheimer’s and it’s being presented in conjunction with the Pennsylvania Department of Aging, Dementia Friendly PA and the Alzheimer’s Association. It’s this Tuesday, the 13th of January at 10AM.

• In yet another episode of my least favorite (but most consistently thought of) show “The US Healthcare System Sure Does Suck, Now Doesn’t It” now broadcasting on some network with the balls to defy the current administration’s gestapo tactics on journalism (and many other things - I’m looking (with sympathy) at you, people of Minneapolis), I got a call from the infusion center that I’ve been going to every two weeks for… checks calendar… 68 weeks now telling me that my scheduled infusion (checks calendar… number 35 for those of you who are counting) was cancelled. It seems that even though I’ve been doing these things for… checking calendar again… 68 straight weeks without fail, there was a question about whether or not I should have it because my (bad) neurologist’s office had neglected to send in the proper paperwork. This call happened at 11AM on Friday. The neuro is closed that day - as he is every Friday. So, in light of the lack of paper, the best the scheduling team could do is cancel my booking. (Now, let me be really clear here. I LOVE the scheduling team at my infusion center. They’ve been really good to me, and are always super pleasant when I call. This is not their fault. They’ve got no choice - and no power. And they were super apologetic.) The way I understand the process now is this: Because I do not go see my Neurologist every 2 weeks after my infusion for a follow-up, he needs to send an addendum each time. Now, kudos to his office for not screwing that up over the past… checking calendar once again… 68 weeks, AND I’m being cognizant that this is a busy and holiday-filled season so a single mistake is not the end of the world. This is more a scathing indictment of a system that does not allow for a realistic process to occur. I don’t really know whose fault the creation of the system is - insurance or hospital - but it’s stupid nonetheless.

  So… I was told that if I could get in contact with the neuro office first thing Monday, the best I could hope for was being fit in later that day, so as not to totally screw up my schedule. (I CANNOT have infusions less than 14 days apart, so if I miss a day, the entire schedule has to be changed. The good news is that I’ve only got (no need to check the calendar for this… I know it and live it) 5 (inclusive) more before I’m done with the initial phase, so it’s not THAT big a deal and… I’VE ONLY GOT FIVE MORE BEFORE I’M DONE!!!!!! YAY!) I hung up the phone and sent off an email to the office manager. I called the office and got their service and left a message. And my phone rang. It was the scheduling person telling me that a fax with the addendum just came in, and I was all set. And 25 minutes after that I got a call from an unknown neurologist following up on my emergency message. I thanked them and said I was taken care of. And I’m going on time and on schedule for my infusion number… quickly checking my calendar… 35 (of 39). So good. It all worked out. So I don’t know where the flaw is - and in the end it is barely worth the 500 vitriolic words I’ve wasted your time with - but it made me angry. So I vent here because I can.

• I got an email out of the blue asking me if I might be interested in being on a panel for a major international conference in LONDON. All expenses paid. So.. yeah. I guess so! 🙂It’s still very much in the works - the group is putting together an abstract for submission, and that has to be accepted by the conference folks - so it could be months before I know anything - but it’s super gratifying to be asked because…

Clearly what I’m doing here is making some sort of difference, and that’s what I’m striving for. I’m going to spoil something from the book here in closing, because I really like it - and I like the serendipitous way I found it. I was watching a show called 1972 - The Year That Music Changed Everything. It’s pretty good, and of course, the music in 1972 was off the charts great, so it was really fun to watch. It’s also sad to see that we are basically still fighting the same battles and that so little progress has been made. I’m looking at you people of Greenland. I really want to come to your country someday, but I want to do it in the reverential and respectful way that it should be done. Here is at least one American who does not believe in this hurtful grandstanding. So anyway, the show was focusing on John Lennon and his protesting against the war in Viet Nam and the writing of the song Imagine. As they were showing something (I don’t even remember what) there was a voiceover of John saying:

And that just struck me so deeply. It’s exactly what I feel about what I’m doing here, with the writing and advocacy. And even though Lennon and I were/are fighting very different wars, the sentiment is still the same. And for all of you out there who are doing your thing fighting for the good of this country in the face of overwhelming odds, keep going. It was apathy that brought us here and it will be passion that heals us.

And for all of you (us) that are fighting for resources, medications, support and the end of Alzheimer’s I thank you from the bottom of my heart. Without you (and this) my life would not be nearly as full as it is right now. This fight has made an otherwise bleak situation much brighter.

Thanks for reading

Sean

Microglia are the “resident janitors of the central nervous system, and this new drug is looking to reduce inflammation of the Microglia and increase immune response. That’s pretty exciting. The study people are really happy that I’m taking Leqembi as this will give them a chance to see how the two interact. So, overall this is very exciting, and I really hope that I get in, and that I actually get the drug and not the placebo. There will be two cohorts of 8 people in the study, and of those, 6 will get the drug and 2 will not. Those are decent odds.

I’m also starting another trial that I mentioned in my last post - They’ll do on-line neurocognitive exams for two years while also keeping an eye out for other trials that might be beneficial. Anyone with Alzheimer’s should look into it here.

https://www.everythingad.org/

I had my first session in the Family and Persons Living With Dementia panel. This is a joint project of the Alzheimer’s Association and the University of Southern California’s Schaeffer Center. Its goal is to quantify the “cost” (financial and intellectual) to families living with Alzheimer’s or another dementia. This panel will “meet” four times per year. The group is evenly split between people living with dementia and people caring for them. At this time there are no pairs in the group. It’s a wide range of folks, and we had some good conversations. The work is very important, and will be presented to the government to assist with the process of planning for the massive influx of Alzheimer’s patients that has been predicted for the next generation.

Wendy and I also started a trial with the University of Michigan called Shared Lives and Everyday Experiences in Partners. This is another multi year project, of which this is phase one. It involves taking on-line surveys (regarding health and our activities) and wearing one of these for a week. This study will look into sleep patterns and associated brain health. So, yeah. Keeping busy fighting the fight.

There was a lovely event in a town near me, called Facing Alzheimer’s Together: A Community Conversation on Impact, Resources, and Policy. It was sponsored by the (you guessed it) Alzheimer’s Association and we talked about the political agenda of the past year and looked a bit into the future. Here is a link to my part of it: 2025-12-09 Marlboro Senior Center.MOV.

For anyone who is interested, I’ll be doing a webinar in association with the Alzheimer’s Association (PA chapter) and the PA Department of Aging. If you want to join this is the registration link. The flyer, with date and time is:

I’ll also be the “first hand” account at the following talk, also in Pennsylvania, that unfortunately is not open to the general public. But it’s a nice write up, and hopefully it’ll be videotaped so I can post it after.

I’m so happy to have the opportunity to do this work. And in that light, I’ll close with something written by Wendy:

Transforming World, by Wendy Bradley

It’s a fascinating thing to see, it really is. I’m watching my husband transform, and not in the ways I assumed he would when he was diagnosed with Early Onset Alzheimer’s almost a year and a half ago.

I’m watching my introverted, wall flower partner blossom into a vibrant soothsayer of sorts. I’m not sure he can see into the future really, but he is most assuredly creating the future he sees for himself with determination and purpose.

He is inspirational, not only to me, but to others. He works tirelessly as an advocate and speaks from his heart to anyone who will pull up a chair and listen. I’ve watched him work a room at area Senior Centers, and I’ve listened to his gently coaxing over the phone in conversation with others newly diagnosed. He is present for strangers. This is a man who would get on a plane and throw on his headphones before buckling his seatbelt in an attempt to rid himself of any source of disruption or conversation with a weary fellow traveler. (There is a distinct reason we ended up together…we balance each other out…I make penpals on planes, encourage people to write their stories down and share their voice with the world, I find people we know in common, it’s so directly in contrast to Sean’s past personality.)

And yet, here we are today. He extends himself to others in a way I’ve never been witness to in our thirty plus years of togetherness. What a joy this is to bear witness to, to watch him flourish, to see him find his potential and live it.

Oh, Alzheimer’s still sucks, but I guess it can provide a new lease on a transformed life. I’m sticking with this sentiment for as long as I can.

Will things change? Absolutely, I’m not a fool, I know what will come. But for today, I’m good. I’ll watch with quiet amazement as this man becomes…whatever it is he becomes.

Oh, and a big thumbs up to Gov. Kathy Hochul for signing the Medical Aid In Dying Act. It won’t help me on my journey, but it can help countless others - and if you don’t agree with it, or your religion forbids it - don’t do it. It’s that simple. There are far too many safeguards built in for any of the scare-mongers’ fears to be realized.

Thank you for reading, watching, listening, caring and (when it comes out) buying the book! I hope your upcoming year is great - and despite my disease - I know that mine will be.

Sean

I went for my second visit to my (good) neurologist and it was another hour long doozy! Folks, when you find a good doctor hang on to them - and if you don’t have one, find one. The medical experience can actually be positive and educational with the right practitioner. I was able to pitch nearly every idea I’ve had about my treatment to him, and it was all heard and responded to. As opposed to the scoffing of my other neurologist, this guy really is interested, beyond the most basic prescribing.

I spoke to him about my concerns regarding the Inspire device, my future with Leqembi, my interest in ongoing clinical trials, the various drugs or treatments that have been recommended or pointed out by readers and friends and asked about other forms of suggested treatment. Everything I brought up was met with a serious and considered response. I’ll get into a little of it:

• I asked if he thought there was validity to my thoughts of stopping Leqembi after my initial run was completed in favor of exploring new clinical trials. His response was that in some cases, the so-called maintenance dosing might not be called for at all. Leqembi has been proven to be a far superior drug than even originally advertised, and there was a real potential that all plaques could be dissipated by the end of the 18 month cycle. If that were to be the case - and a clean brain scan obtained, then the thought of going off the drug was not unreasonable. Plaques take years to build up, and if I monitored my brain activity via frequent neuropsych exams and careful observation, it could result in a situation where I could take that path. He promised to help find studies if I chose that route.

• He suggested, because I didn’t tolerate Donepezil well, that I might explore a few supplements that served similar functions on the brain. I’ve ordered them, but have not started taking them for reasons I will get into later in this post.

• I was wearing my ALZ FIRED UP hat, and he loved it. Suggested really working on getting the site known and that it was a great service and idea. So again, head over to http://alzfiredup.com and check out (and buy) our ideas. My doctor says so. We’re updating and adding fairly regularly.

• We talked a lot about some of the recent things that have come out concerning the gut biome, lithium, vagus nerve stimulation and other things. He was quite keen on the gut biome studies, and suggested that a meeting with a nutritionist who focused on this might be a good idea. He is also fascinated by the lithium study, and said he wished he could start prescribing it right away, but that the doses needed to achieve the study results would be catastrophic and that the negative effects of lithium far outweigh the positive for my requirements at this time, but he was really hopeful that somebody would come up with a way to make this a reality. He thought that vagus nerve stimulation would be a great thing for Parkinson’s patients, but would have no great benefit on Alzheimer’s. And finally, he had a simple explanation as to why stem cell therapy, at this time, would prove to be ineffective. The pathways to be repaired, he said, are far too long and complex. Much more work is needed before that will become an effective tool.

• I told him that I had cancelled the surgery for the Inspire because of my concern that I would not be able to have the MRIs needed in order to join clinical trials. His opinion was that correcting sleep apnea was far more important than an MRI for a clinical trial, and he would recommend doing the surgery if there was no other option so…

I agreed, at my next pulmonology appointment (which took place shortly thereafter) to give the CPAP another go. I made no explicit promises except to try. He suggested a newer mask called a nasal pillow. As opposed to the other times I’ve tried this, I actually had to go in for a mask fitting and training session. It has now been nearly two weeks since I got the device and I can say this without hesitation. I still hate it. But I’m wearing it - last night for the full night. It’s invasive and difficult to get used to (and these are all knowns) but slowly, I am getting used to it, and, according to the app that monitors my sleep, I’m having a very successful run of it. So I’ll keep on keepin’ on.

I had a few other encounters (mostly via zoom) of note - the first was an email, out of the blue, from someone who had seen my speech at the Pioneer Valley Walk, and taken my card. She had just found her birth family, moved to the area, and discovered that her grandmother had some form of dementia. She was thinking of founding a non-profit to advocate for the cure, and emailed me for advice. We spoke via google meet for over an hour, and I connected her with the advocacy wing of the Alzheimer’s Association and offered any other help that I could give. But I am so gratified that my speaking and my message is getting across, and those calls are deeply meaningful to me. A nursing student who attended an event I was on a panel at, has written to ask if I would address a bunch of her peers as well.

I was contacted by folks from Bio-Gen and Eisai (the team behind Leqembi) to see if I was willing to do any press work for them. Of course I agreed. That could be fun, and I’m looking forward to it. We’ll see what pans out.

The clinical trial that I was not accepted to because of the laxitude of my doctor’s office in sending my medical records reached out, and they have a space for me! It’s this one, and I’ve spoken to my neurologist about it and he thinks it sounds like a great idea. I go in for my first screening visit in two days. It’s a bit of a catch-22 though. You have to have amyloid plaque in your brain to participate, and if the Leqembi has done what my doctor thinks it might have, then I won’t have the plaque, and I won’t be able to do the trial. I suppose that’s a good problem to have. I’ll get a PET scan out of it, which is something I’ve been curious about for quite some time now. I cannot alter any medications for a time though, which is the reason that I did not start the supplements I mentioned above.

On the recommendation of one of the scientists I met while doing a talk, I’ve signed up for the Alzheimer’s Disease Registry. They’ll offer on-line neurological exams and monitor your changes for as long as you want to participate. Additionally, they’ll actively match you with clinical trials. I recommend all my readers that have (or are caring for someone with) Alzheimer’s sign up and connect with these good folks. It sounds like a great resource, and another good benefit to the world.

I’ve also joined a study, through the Alzheimer’s Association and the University of Southern California, which is intended to study the long term financial impact of living with Alzheimer’s. This is also a long term study, and is really necessary. For many people the costs of the disease are astronomical and if it’s not officially documented nothing proactive can or will be done about it. So I’m happy to be involved.

I’ve had conversations with three of my fellow advocates for my book. It’s fascinating the subtle differences in the way we’ve all handled parts of our diagnosis. But all of us agree that speaking out, owning the disease and becoming advocates has been a positive game changer in our lives.

And finally, as I mentioned at the start, I’m well into the book, and I’m hoping that someone out there will want to publish it and get it out to the people that need it. So if any readers know anyone, or know anyone who knows someone, I’d appreciate the introduction. I need an agent (probably) and a publisher (definitely). I DO NOT want to self publish. I think that what I have to say is important enough that it should be in bookstores and an available resource. Feel free to pass on the blog (there’s a contact form at the top of the home page) or my new email alzblog@outlook.com.

And, as always,

Thanks for reading and sticking with me,

Sean

Oh, and there’s absolutely no such thing as a “war on Christmas” so, Happy Holidays!!!!

I had some bloodwork done, and in getting it read, it was determined that I was, besides having Alzheimer’s, in excellent health, so I came off of three medications - one for Hypertension (I’m still on some, but not three!), one for Gout, since my Uric Acid levels were really low and I haven’t had a flare in years, and finally, I went off of my statin - which I was only taking because my neurologist wanted it for stroke prevention, but I’ve have been hearing too much about the negative effects of statins recently to want to stay on - and my PCP said my LDL (I think) was really low. So, three less pills a day. That’s a good thing!

The other thing that came out of this doctor visit was, because I complained about it, a series of phone calls to dissect the fact that because of their negligence in sending my medical records over, I lost a place in a very promising clinical trial. The first call came from an obviously low level functionary, who told me they were very sorry, but that really it was not their fault as they outsourced medical records. I told that person, who - like many in that level of communication in the medical industry today had no power or seeming empathy - that not our fault was a fallacy, because indeed, they were my doctors and it was, in pure unadulterated fact, their fault. I apologized for being snappy because it actually wasn’t her fault exactly, but sadly, she was the one the office elected to point the finger at and say “you make the call…”. No matter the issue, I dislike being snippy with low level functionaries - no matter how detached they may be. My wife would have chewed her face off. Just saying. I ended the call with a request to speak to someone who would actually have some power to do something rather than just deflect blame.

Quite a few days later, with the incident relegated to the moldering dust heap of the back of my mind, slowly being eaten away by the plaques, I got a call from someone else in the doctor’s office. This time I spoke to a reasonably well informed and utterly contrite person who, while we both acknowledged that nothing could be done to help the past situation, accepted the premise that because her office had hired the company who did not provide the records in a timely manner they were ultimately at fault. Fat lotta good it does in the short term, but it does feel good to be heard at least. Wendy mentioned that HIPAA actually stipulates that records must be transferred in 30 days or less, and that were we of the litigious sort, we would have a very winning case on our hands. I don’t really care about the money - but I want to ensure that in the future, my record requests, no matter how odd they might seem, receive priority status. I got that promise - but I still have my doubts. I explained (not that I should have to) that clinical trials might very well become the thing that keeps me alive. This was not just a fancy - but a real medical necessity. I reminded the nice lady that they were actually managing people’s lives and futures, and that farming them out to a big business that manages, perhaps, millions of records, is not in the patient’s best interest. Ever. It is yet another call for self advocacy. These clinics and practices are farming out your life. You are the only one who can (or will) ensure that it is managed to your specifications and needs.

I’m up in arms about this for many reasons - but the biggest for right now is that I’m coming near (10 more infusions) to the end of the first round of my Leqembi treatments. It’s been the real deal for me, and provided that I still have health insurance and that “maintenance” doses are covered, the general plan calls for me to go onto monthly infusions thereafter (or hopefully the new subcutaneous injection). HOWEVER, I’m considering going off it (after consultation with my “good” neurologist, with whom I’m meeting this coming week) and joining some sort of clinical trial. I’ve been rejected from quite a few because they can’t get good data while I’m taking Leqembi. That’s understandable. And there is so much awesome research being done these days, with such interesting processes, that I’m sorely tempted to try something out for a year or so. I do know (and fully understand) the risk - which is why my Neurologist will be consulted - but my heart leans in that direction. More later on that, but consider this an un-tabled conversation.

I did a zoom based conference with a bunch of medical students which went really well. We talked about ways they, as potential doctors and care workers, could be more empathetic and helpful to newly diagnosed people. They were a bright and interested group and I had a lot of fun doing it. Unfortunately the presenters didn’t archive the session, so I don’t have a copy (either to keep or to share). It’s too bad, because it was a good one.

My much talked about walk is over, but Wendy and I went out to Phoenix to join Jonas and Pickles and walk with their team. The Phoenix walk is HUGE, with well over 5,000 participants and a 1 Million Dollar + goal (comparatively, our walk had a goal of under 300K.). We had a lot of fun, the weather was beautiful and I managed to get Jonas and I on local TV for a quick interview. (Please note the Alz Fired Up shirt - You can get one, or many other items at Our Website)

I spoke to someone privately about doing a radio show with them - it was a finance based show talking about the things newly diagnosed people needed to take care of. I gave them my card and link to this blog and told them to give me a call - I’d be more than happy to do it. They never did, and I learned that the radio station was a right-wing AM Charlie Kirk loving place. So perhaps they read this blog and decided that I would make a scene. Well, if you’re reading, I won’t. Fighting Alzheimer’s and helping people regardless of political affiliation is what I (and the Alzheimer’s Association) do. There’s a real reason why I was wearing purple that day, so I hope you read this, and I hope you have the wherewithal to have me zoom in for a chat. But it was nice to see J & P and reconnect with her lovely family, who came out for the walk and have been wonderfully supportive.

Immediately after landing back home, Wendy and I went into the big(ish) city so I could be on a roundtable at an international Gerontological conference. They were hosting a panel called Patient Perspectives of Disease-Modifying Therapies for Alzheimer’s Disease and I would be one of three Alzheimer’s advocates - all taking Leqembi - there to discuss it. It was actually done twice, once in private, on video for later broadcast, and once a few hours later in front of an audience. At the taping, I realized that all the other advocates had brought their care partners with them - and I had left Wendy back in our hotel. So we got her on stage for the live session, and it was really nice to work up there with her. We’re a good team, and I hope she will join me more often. I’ll post a link to the full one hour roundtable when I get it.

Beyond the medical, we’ve been to several concerts, including another session with the great Ruthie Foster - this time as a solo gig - just her and her new guitar (which she has named Mavis). I’ve seen two people in my entire life who can captivate a room to stillness all by themselves. The first is Henry Rollins, whom I’ve heard speak many times. Henry is a former punk rocker, lead singer of Black Flag. He’s now (and probably always was) an extremely astute and witty political commentator, who weaves tales about life on the road with social commentary and sometimes photos. We see the world very similarly. He comes on stage and starts talking. And leaves nearly two hours later seemingly without having taken a breath. Here’s a show from 2004. It’s exhausting just watching him. And completely exhilarating. Ruthie, on the other hand, is as smooth as can be, and even though she captivates utterly, you leave feeling relaxed and well cared for. Here’s a solo show at the… um… what was formerly known as the Kennedy Center, from 2024. She was sitting when we saw her, because she allegedly forgot her guitar strap, so it was even more home-like. It was a great show, and I’ll see her whenever she’s in the area.

A couple of other concerts and a pretty good comedy show rounded out the past month well. I’ve got some interesting things in the pipeline - several organizations have reached out - seemingly having found me through this blog, which is great. I’m meeting with one of them tomorrow. I’m not 100% sure what they’re after, but I’m always in for something! And, I’m about 25K words into the book, and it’s going well. I am really hopeful about this project and the good I might be able to do. So I might be blogging a little less - only when there’s something important to note - because I’m focusing all my writing energy into the book. But I’ll still be here!

I also attended a webinar done by the group Compassion & Choices (who I’d really love to do some advocacy for, but it seems as if all they want is my money - not my effort) and left feeling a tad deflated. None of their initiatives - all of which I support - include compassion or choice for people dying of Dementia. I understand that organizations like that have to weave very delicate threads - that the mere suggestion of any impropriety could be enough to curtail all initiatives - but their disregard of the pain of a dementia related “fade to black” is callous to my eye. And, as I’ve stated in the past, the fact that laws are written in such a way as to protect a microcosm of people, while potentially causing harm to others is not something I’m happy about. But it’s far bigger than this - while I was at the Gerontology conference, Wendy and I went to a food court for lunch. We sat at a table next to a bunch of conference attendees - perhaps they were going to be presenters based on the snippets of conversation I eavesdropped on. Anyway, a little bit I overheard was related to some process or other they were going to try to implement, but they were worried that - despite how good the process would be for some - other people would take umbrage. They were discussing whether to table the initiative or not. (I don’t know what it was, nor do I know the outcome of their talk). And that made me annoyed. I do not believe that we should not create processes for some because others might abuse it or be offended. Like SNAP - for MOST PEOPLE, it’s a lifesaver. For a very few it’s a way to game the system. Let’s figure out a way to stop the gamers without hurting those that really need the lifeline. Let’s figure out a way to allow people with dementia to enact a plan while they’re lucid that can be carried out by… someone when they’re not, without making, say, bi-polar people (to name one demographic), think that they can and will be forcibly put down. There’s got to be a way. But for now, my needs are being shunted off so as not to cause any waves. And I don’t like that.

Finally, after nearly 16 months, I was finally approved for my social security disability. That money will be ever so helpful as we move forward, and I’m really grateful to those who worked (despite not being paid at the time) to approve it.

That’s all for now - I’ve got a book to write! And I’m going back to using my real name!

Thanks for reading!!!

Sean

I really wish I had written some of that into my speech today - but I didn’t. I kept it real. (For those that don’t know, Dewey Cox is a character loosely based on Johnny Cash in the comedy movie Walk Hard: The Dewey Cox Story from 2007 starring John C. Reilly.) What I did say was this:

There were over 1,200 people gathered this morning at the campus of the Holyoke Community College for the 2025 Pioneer Valley Walk To End Alzheimer’s, which you might have seen mentioned a time or 10,000,000 in these pages. To date, this particular walk (The walks are the largest fundraisers for the Alzheimer’s Association and there are over 600 walks nationally) has raised over $213,000, of which Team ALZblog has collectively raised over $36,000 - thanks to the amazing generosity of 258 family members, friends, readers and good people like you. I raise a glass to you, friends, to thank you all for your generosity and support.

For those who’ve never been, the actual walk part of the walk is not… hard. In fact it is the community and celebration leading up to the walking that is the moving (again… no pun intended) part of the day. (And yes, sorry, the pun was very much intended. I lied.) For in the events leading up to the walking, there was dancing, conversing, information sharing, hugs, stories, snacks and more. There was a beautiful and poignant wall of remembrance:

And most of all there was support. Support for those who have lost someone, those who are losing someone and those who will lose someone. And for those, like me, who will lose themselves. Unless we can cobble together enough factual information to formulate a cure, or a better band-aid than the ones we’ve got now (which, needless to say, are far better than those of even two years ago). Science is progressing, but it needs (says this particular bearer of Amyloid Plaque) to progress faster. And we walked to shout that need to the world.

We had two Massachusetts State Senators there. John Velis and Jacob (Jake) Oliveira, both were very invested in the cause. I had a great conversation with Velis about future work we might be able to do together, and I’m sure that Olivera would want the same. I connected with the Director of Public Policy for the Alzheimer’s Association and we agreed that we would also do more together. I gave my blog card out to many, and offered my support to anyone who wanted it. It was that kind of day. And when we did do the business of walking, we walked past signs like this one:

which lined the 2 mile walk route. There were High-School students and marching bands, an inordinate number of hockey players (no idea why, but happy to have them!) and people of all creeds and ages. It was that kind of day.

The walk is over, and Wendy and I will take a minute to catch our breath. But rest assured, plans for next year (including, god help me, a group skydive fundraiser) are already being discussed. But for now, rest assured that you’ve heard (probably) the last of this for at least the next few months.

There are other things to discuss - but this post shall not stray from its purpose - It is a post of thanks to everyone involved. From the Alzheimer’s Association who are leading the fight, to the donors, raffle ticket buyers, students, former colleagues, friends, family members, scientists, doctors, business owners, politicians, actors and musicians who speak out and support the cause both intellectually and financially - I thank you from the bottom of my heart.

Thanks Dewey. And thank YOU, for being part of this journey with me and listening (reading) to my blathering.

Dy

To explain, the “flowers” are a tribute system the Alzheimer’s Association uses:

• Blue: Living with dementia

• Yellow: Caretaking someone with dementia

• Purple: Lost someone to dementia

• Orange: Supporter of the cause, and

• White: Usually just a single person, often a child, to represent the end of the disease.

Today, I made a pledge to myself to try my best to one day, be able to hold the white flower at the last ever Walk To End Alzheimer’s. I would love to be part of a group of thousands of people, happily waving goodbye to this scourge. I think that’s a fairly reasonable goal, no? Every dollar donated helps the potential that I reach that goal.

So, I wrote the following speech to give - which was meant to be given at the pre-walk ceremony:

I quite like it. But I didn’t give it. The walk chair, who was the MC, said most of what I wrote, and left me scrambling to come up with something. Here’s what I came up with. They asked (told) me to keep it under 4 minutes. (Also note the spiffy ALZBlog hat, which you can own for yourself by clicking the link!)

I think it went OK. I’m repeating the effort next weekend at the proper walk, and I’ll refine the talk a bit more.

Then we drove almost all the way across the state so that I could jump out of an airplane. Way back in June, Wendy and I went to a gala fundraising event for the Alzheimer’s association and I somehow managed to bid on - and win - a tandem skydive adventure. I say managed because it was not the first choice of my long suffering wife that I jump out of a plane. Ever. And yet, as is so often the outcome, my long suffering wife’s choice is not what I did. So today, I jumped while strapped to another (far more skilled) person, whose name is Brett, who took his own life into his hands (as he does frequently) in order to help me knock another item off of the bucket list. And boy it was fun. The fall colors were gorgeous, I could see for miles, the weather was great, and… I freaking jumped out of an airplane! How cool is that?

What is really interesting is that you never feel like you’re falling. Sure, while you’re in freefall, the wind is whipping around you and the noise is fierce (and the neck of my coat, which I left partially unzipped, was slapping me in the face repeatedly), but there is never that gut sensation of falling - except for that one brief moment where you commit - and jump out of the plane. After that, it’s all smooth. There is a brief lurch when the chute opens, and then it’s a slow peaceful sightseeing tour from an angle you’ve never seen. Brett let me drive the chute a bit, and I did some donuts in the sky, which was super fun.

Surprisingly, It was not scary at all. I thought I’d have a little fear, but I really didn’t. The group we used, Skydive Pepperell was completely professional, and really nice about it - despite a 9,000,000 page long legal thing you had to sign stating that neither you or anyone you’ve ever met would ever sue them if you happened to get hurt because you knew, well in advance, that you COULD get hurt. Which is fine! I totally got it, and I didn’t get hurt. So, thank you Brett and the rest of the team for allowing me to fulfill yet another dream in this pretty good life I’ve had. And thank you for your kind donation to the Alzheimer’s Association for the gala. (In a sense, I was still doing my advocacy work when jumping, because I donated by buying the certificate, right?)

And I know I’ve said this before, but this disease, Alzheimer’s, which sucks, has pushed me forward in ways that I never had been pushed before and I am doing things I never thought I’d do, and I’m really loving it. So… mixed blessing maybe? Probably not, but still - I am now, and will continue to be, living my very best life and will do so for as long as I can.

And speaking of very best, this week I spun up (clicked on) a track from the brand new, three hour long record by one of my favorite bands (whom I’ve extolled here in these pages before) The Necks. The new album is called Disquiet, and for my sensory (over) stimulation, I listened to the 74 minute long track Ghost Net. I wrote to a friend, right after listening and said: “Ghost Net just cured my Alzheimer’s. 🙂 WOW!!!! Every fucked up neuron in my brain is currently properly aligned!” This is an extremely adventurous and powerful piece of music. Nothing makes sense, and yet, everything makes sense. Throw on a set of headphones (far better) or at least get into a space with a really good stereo, (trust me, it’s really not going to work as well coming out of your phone or a computer speaker. You need the separation of a good set of headphones or a well aligned stereo) divest yourself of all further sensory input (unless you have my lights synced up, which worked really well) and let this wonderful work wash your soul clean.

Beyond all that, I had infusion number 29 last week. No problems to report, which is good. Wendy and I also went Rail Biking last weekend, which was a lot of fun. It’s a two person recumbent bike that you pedal over train tracks. We went though beautiful forests and over a 90 foot high bridge. A really well done tour. Another high recommendation from me!

Earlier in the week, we had to go pick up one of our cars from the shop, about 30 minutes from the house. For some reason, I chose to drive the long way. As we were driving Wendy called out - “There’s a drum set by the side of the road. Do you want to stop?” Well, sure I did - and we loaded it up into the back of the car, and now I have a drum set!!!! I believe I’ve mentioned that I want one before. It was filthy, and I had no sticks, chair or cymbals - but the big part was done. And now it’s clean, and I’ve got a seat and sticks, and am just waiting on cymbals to arrive in the mail tomorrow. And then we’ll see if I can count. I think it will be a really good brain exercise for me, as numbers are getting more difficult. We’ll see if I can ever get beyond 4/4 - but even if that’s all I can do - I can still play the funk. And that will make me happy! I’ll put a picture up in my next post when the cymbals are set up.

I did a great zoom based panel discussion with a group of professionals who provide care services for elderly people (and more). It was informative for them, and a lot of fun for me. I worked with some new (to me) people, and I think we clicked quite well. One of the things we all agreed on is that the face of Alzheimer’s is changing, and that we, the younger and vibrant, are now it. And the care, support and messaging needs to reflect this.

To partially reach that end, there’s been some rebranding behind the scenes. You can still access this blog the way you used to, but you can also get directly to it by going to Alzblog.Net. There, you’ll also find a link to the newly named ALZFiredUP store, which you can also get to directly. That’s where we’re rolling out our t-shirt, hat, drinking vessel and apron designs. We’re not trying to live off of this, just to have some fun and raise awareness. 10% of all profits will go to the, you guessed it, Alzheimer’s Association. We’re pretty regularly updating and adding stuff, so keep checking in. We’ve got some great new ideas ahead!

I’m also really trying to push my public speaking and get more gigs, both with and outside of the Alzheimer’s Association (where I can branch a little further off mission). I have become convinced that it is younger people (high-school) that really need to learn about this disease - both from a prevention and from a “how to deal with dementia in your family” standpoint. So, I’m telling all my former colleagues from the prep school world - get in touch. I’ll come to your school and do an info session. I really think it will benefit the kids (and faculty) greatly.

And also, a little off topic (but not really), I’m really proud of all of you who showed up for the peaceful No-King’s day protests on the 18th. Even if you support some of the initiatives being pushed by the current administration, you should be horrified by the process in which they are being enacted and the callous disregard being shown to a large segment of Americans of many stripes.

And as always,

Thanks for reading!

Dy

1: I’ve been back in the swing of doing my music/light therapy and I can’t believe how great it’s been. It really is a key for me, and I shan’t let it lapse again. I’ve used the time to delve back into my archives and yesterday I revisited one of the great psychedelic albums from the 70’s: You, by the amazing band Gong. Skip about three minutes in, turn off the lights and slap a pair of headphones on. Enjoy. Since I was a half (well, fully) baked teen, this record has kept my interest. Gong has changed tone, members, styles and more over their nearly 60 year existence (in fact they still exist, but none of the players are (or were) ever in the original band). I saw this new format recently, and they were great. As another “all things are connected” moment, the oft-mentioned Bill Laswell played with the 1908 version of the band, called New York Gong.

2: The big news, teased earlier, is the creation of the ALZBLog brand and site. It’s here: alzblog.net. It’s still very much in “creation mode”, but we’ve got a couple of items for sale, some videos and information about potentially booking me for talks. I’ll be donating 10% of all sales to The Alzheimer’s Association to thank them for their services. This will probably go into the general fund, not the walk - although I haven’t worked out the details with them yet. I’ve got a ton more ideas for t-shirts and other things, so keep poking back to see if anything suits your fancy. Rocking the ALZBlog gear is a great way to support me and the cause in general. I won’t be moving the blog, but it is linked from the site there too.

3: Speaking of the walk, the campaign is almost over. Team ALZBlog has over 30 members, and we’ve raised over 33,000! That’s really amazing. And thank you to all who have participated. I’m still $258 under my personal goal though. So… One last hit: Donate Here

4: I’ve got a bunch of interesting stuff lined up for the next few months. I’ll report on them after they happen.

5: Really hitting the pages on the book now, which (once I get the alzblog site tweaked to my liking) will become my primary focus. I will keep the blog up as well. It’ll be a cozy winter in front of the computer for sure!

So, check out the new site, buy some gear, let me know if you’ve got any ideas for things to print, and - if you’re an artist, and want to donate a design to be printed, I’d be happy to incorporate it onto a t-shirt or something. Let me know what you think!!!

Thanks for being part of this really illuminating journey with me,

Dy.

If you ever convince me to actually name the most important records of my formative years, it is quite likely that I’ll mention the impact of the fourth Peter Gabriel album (and also the 3rd which I think I’ve written about before). 4 came out in 1982, when I was 19. I was not a happy 19, and 4 fit my mood quite well. To many casual listeners, Paul Simon’s Graceland from 1986 signified the creation of Afro-Pop (which is a horrible term). Notwithstanding all the amazing music actually created in Africa for years before I’d say the song Biko, from the amazing 3rd album by Gabriel - released in 1980 was one of my first forays into the westernization of African Music and preceded the Simon album by 6 years. (And let’s not forget Cream drummer Ginger Baker’s band African Force from the early 70’s or his work with Fela Anikulapo Kuti among other innovations.) And while Biko is a great song and has a really strong political message behind it (which should still be especially resonant today), 4 brings the tribal beats and worldly integration up another notch. Now, there are those that will cry about cultural appropriation. I don’t really subscribe to this train of thought. Most great art is an expansion or integration of other art. As I’ve written in the past, you can’t really have any great “American” music without Africa or the Caribbean. And unlike, say, Led Zeppelin, who blatantly stole their songs from blues artists, tweaked them a bit and sold them as their own creations, Gabriel honors the music and people of other cultures with his music. Perhaps we might, as a nation, get back into that mindset? Honoring other cultures? I dunno. It might help with all the toxic bullshit floating around the world these days…

Anyhoo… PG4 starts out with some synthesizer washes (much of the album was created on the then novel but now dated Fairlight CMI) before launching into the percussive power of The Rhythm Of The Heat. A super strong opening song, ending with the howling refrain “The Rhythm Has My Soul….” before ending with a percussive frenzy. When I saw this band live at the storied Palladium on 14th St. in NYC in 1982, they put on an engaging show that started from the back of the auditorium with the full band walking through the audience playing various African percussion instruments, and ..Rhythm…was the opening number. For me though, the song of the album is the second, San Jacinto, which, while relating the story of an indigenous boy’s rite of passage, explores the exploitation and commercialization of the Native American culture. It is also one of the most vocally expressive pieces of music I know and cements for me, upon each listen, that Gabriel has one of the great singing voices of all time. Lyrically, the album touches upon themes like the aforementioned native American exploitation, the treatment of political prisoners, psychologist Carl Jung’s experiences in Kenya and more. A deep album from all perspectives, and one that has stood the test of time for me quite well. It was a welcome journey back into my light/sound therapy, and I realized just how much I’ve missed that routine. I won’t let it slip again!

I just want to take a moment here to mention Playing For Change. They are a non-profit organization that (among other things) pairs musicians from all over the world up to recreate famous songs. Their mission is simple - and very close to my heart. Use music to bring people together. They are an organization well worth supporting - and many of their videos are available on their Songs Around The World YouTube playlist including their take on Gabriel’s Biko. If you love music, and you love culture, it’s well worth a few hours of your time to listen to some of these renditions. Who knows, if you’re fond of diving deep into musical rabbit holes like I am, you might find someone new to love. I just did - by listening to the PFC version of Led Zeppelin’s (appropriately credited) track When The Levee Breaks, I discovered Buffalo Nichols, and now I own both of his records! I’ve also become quite interested in Italian slide guitar player, Roberto Luti - but I’ve not seen anything of his outside the PFC content.

Despite the rather anxious tone of my last post, I really had a wonderful time in Switzerland, Lichtenstein and Italy over the past few weeks. I’m happy (as are my cats) to be home though, and ready to get really focused on writing the book - as long as speaking engagements don’t get in the way. (Good problem to have!) I had infusion number 28 yesterday. Again, “one stick” Catia to the rescue. She went in with no hesitation, and got me on the first try! She’s totally my favorite! And I told her that. Otherwise, no issues to speak of.

One of the other positives to come out of my recent trip was the opportunity to chat with Pickle’s parents (and uncles, aunts and grandparents). They have some illness issues of their own - but are both my equal in their desire to work both within and outside the system. We talked a lot about alternatives and other methods of care, and they highly recommended using coconut oil instead of other oils. This had never crossed my research path before, so I looked it up, and sure enough, there have been some small studies that have shown that there is potential that the medium-chain triglycerides (MCT) found within might have some energy benefit to brain cells. However, there is a higher level of saturated fat than in the oils that I currently use (olive or avocado), so again - one must weigh the risks. High cholesterol is bad for the brain - that’s proven, but some studies show potential benefit to the brain from the MCT. This sounds like another question for my (good) neurologist, who I’m in the process of putting a list together for! The new in-laws swear by it though. Our illnesses are focused on different parts of the body, but it is always nice (?) to meet others who are exploring options.

The speaking opportunities are still coming my way. I got offered a “gig” at a brain exercise conference in the big(ish) city, which I accepted immediately. I’ll, of course, speak to anyone who wants me to, but this seems like something that is really worthwhile, and I’m excited to see what comes of it. I’ll know more details soon.

I had a disappointing experience with a clinical trial, which I did all the prerequisite work for (quite a bit, I’ll add) and then was told that I was eligible, but the trial was full. That’s not a good way to do business, especially when you’re asking for volunteers to put an unknown substance in their bodies. Now it’s also possible that the fault lies with my Primary Care team, who, I was told, never sent any of the requested medical info over, despite my (and the trial team) asking multiple times. I’ve got an appointment with them in 2 weeks, and I intend to stress the importance of these trials and ensure that they comply immediately with any requests for records. If it is the case that the trials’ interest in me waned because of the lack of follow-through, I’ll be super pissed. I’ll probably never know though.

There’s some other stuff coming up - some of which I can’t speak on yet - but suffice to say that right now, life is full, and I’m living it well!

Thanks for reading,

Dy.

I’m on a brief, the first in a long while, vacation in Italy to celebrate the nuptials of Jonas and Pickles, which was quite lovely.

We gave ourselves a few days in front of the wedding to explore - something we’ve always loved to do. Now, historically, I’ve been the trip planner. I’ve taken a lot of joy in getting things just right and usually managed to put together a fantastic experience. Not that Wendy hasn’t been involved, but the minutiae of the trip has generally been my bailiwick. So in this case, we had an un-foreseen schedule change that resulted in leaving two days later than we normally would have (which actually allowed me to join the panel for the Pioneer Valley Walk To End Alzheimer’s opening, which was captured by our friends at WWLP TV news, and can be seen here, and to have a meeting with a representative of US House Member (D-MA) Richard Neal to discuss several important initiatives that the Alzheimer’s Association is working on - most of which were discussed in post #s 44 and 45). Because of this change we left a lot of planning until the last minute - but the planning did get done. Hotels booked and a general driving route planned. Shouldn’t be a big deal then, right? I went online to my phone provider and enabled international data usage so we could use the phone as a GPS and remain in contact and that seemed to be a success as well. But… <cue dramatic music> … all was not as successful as it should have been!

Upon arrival I noticed that our phones were not connecting to the local network. Not voice and text, which should have worked without any modifications, or data, which I had allegedly turned on. So, I spent 4 hours of the first night in Europe, in Lichtenstein, on a web chat with 4 different gentlemen, each of whom made me repeat the problem in writing - despite it being clearly articulated earlier in the chat - and each of whom immediately decided that they knew what the problem was, and how to fix it. Despite it being tried by the guy before them (and documented in the chat) with no success. Finally, at 11PM local time, after nearly 24 hours without sleep, I got on with “advanced support”, who also - immediately - had a fix (thankfully slightly different) that I also knew wouldn’t work (because nobody was paying attention to the “other” problems I was reporting and that I knew were the cause of this issue). I was told that within a half an hour, I would receive a call from the support team which would let me know that my phone was working properly, and for now, they were signing off and doing something on the back end. I needed to sleep. And I knew I was not ever going to have success (we’ve been fighting with this company for three months since switching over to their service, so know how awful their support is) and I needed to go to bed. So I let it go. And here we are, 4 days later, still with no service. But thankfully the car we rented has a built in GPS that works, and so we are in generally OK shape. BUT… I’m stressing myself out because I believe that somehow (even though I know it’s not true) I screwed it up (even though I didn’t). And as I wrote back in post # 51, I live with a constant knot of anxiety that makes me handle things that I used to handle easily quite poorly.

The biggest issue to arise, is that we really didn’t have a specific route through the Dolomites planned - we had a general concept, but I figured I’d be able to pull out my mapping app and navigate us on the fly to what looked interesting. And I couldn’t do that. I made good guesses, and took screenshots, but that’s not the same. And so I was stressed. And I got snappy with Wendy, who called me out on it, and I got to thinking about stress, and about the symptoms of Alzheimer’s that are aggression and anxiety, and I worried that I was exhibiting these symptoms, and began wondering about cause and correlation! And that’s what I want to get into.

Correlation means that there is a connection between two things but it does not prove a cause. So, in this case, the correlation between anxiety and aggression is Alzheimer’s. That is known. My question is this: If I’m anxious about something real (the GPS not working and my seeming inability to fix something that should have been easy), and I am already living with the stress and worry of having Alzheimer’s and knowing what is to come - is that the third factor that disproves causation? That I am not necessarily getting worse - I have a right to be stressed and anxious, and sometimes, when we (all of us) are stressed and anxious we snap at people we love.

I’ll carry this on to the next night, when I woke up in a hotel room, in the dark, and misplaced my way to the bathroom. Now, normally (in the past) I do not believe that I would have ever gotten lost on the way to the bathroom. Yet - it was dark, I had never been in the room before, I was tired, and I had the wherewithal to go back to the bed and find my phone to use the flashlight, and I had only gone to the wrong door - I was in the right general area. So not a big deal, right? EXCEPT… I got back into bed and began obsessing about my error (as benign as I knew it was) and lumped it in with my anxiety about the phone, and my lack of foresight in planning (which I also know was not my fault) and my stomach started churning as I realized I was getting worse (even though I knew I wasn’t). Everybody I’ve mentioned this story to has told me that it has happened to them in one form or another at one time or another. And I know that. And yet, when you live at a hypothetical level of 30% stress, it’s really hard to accept that.

And so, my big questions here (which I will explore with much rigor in my forthcoming book) are these: Is aggression and anxiety a symptom of Alzheimer’s or is it a by-product of the myriad other issues that face us when we live with this disease? Is it something one needs to work through, or is it something one needs to medicate? Is it inevitable as the brain decays or is it navigable with dedicated effort and a good coping mechanism? In other words, are the symptoms of the disease a correlation or a cause? Are the chronically angry people who are living their end times in a dementia ward (or even at home being cared for by loved ones) in that place because they’re angry and anxious or are they angry and anxious because they’re in that place?

Putting it in other, sadly topical, terms: A small subset of women who were pregnant got headaches and took acetaminophen. Some of those women ended up having autistic babies. Some didn’t. Some women had autistic babies and they didn’t take acetaminophen. So, with those facts at hand, can you prove cause? Does acetaminophen cause autism? Or is it corollary? Is that enough data to put out a blanket warning to not use acetaminophen? Should I, because I got lost, never go to a hotel (or to get even more ridiculous, should all hotels be forced to put running lights on the floor leading to the bathroom because a small subset of people get lost? Or even further - should we just ban hotel bathrooms?) Or should I develop, because I know it happened once, a process that has me make sure I know where to go before I get into bed - and not to presume I’ll find my way in the dark in an unfamiliar place? That seems to make a lot more sense to me. (Obviously, I’ve branched off to the absurd here, but the bigger question in itself is quite serious.) And let me add here, that because of a previous surgery, I take Acetaminophen. I cannot take Ibuprophen. And no-one has yet told me I’m autistic. (I’m not at all poking fun at autism here. It’s real, and finding its cause and/or cure should be as essential as finding the cause/cure for Alzheimer’s). And there are equal numbers of emails and websites crossing my path on the regular informing me that X is the cure or Y is the cause, none of which are even remotely true. But, thanks to the success of drugs like Leqembi and Kisunla, there is a surge of interest in curing Alzheimer’s, and the recent study coming out of Harvard University showing that reduced levels of Lithium in the brain could be causal to Alzheimer’s is quite interesting to me. I will be following that one closely - but not yet running out to get lithium supplements and add them to my wellness routine. I will try nearly anything - but not if there is potential harm in it - and there are noted downsides to excess lithium in the body. (But also please note the disclaimer about funding on the linked study - and get angry at the puerile and punitive actions of this current administration. This too was one of the topics discussed at Rep. Neal’s office.)

Wendy and I talked at length about these travel related stress issues, and determined that she would become more involved in the planning of these trips (to be frank, she’s been doing most of our planning recently anyway) and making sure that she has the coping mechanisms in place to work within the new paradigm that is my level of stress. It’s a sad truth, but is real nonetheless. And I need to work to bring my level of stress down. I can’t live with it. And too much great stuff is happening to, for and with me for me to let stress become an issue. I’m in the middle of living my very best life - and doing everything else that I can to delay what seems like the inevitable, and I will not let these little nagging issues get the better of me. Except sometimes they do. And is that what is meant to happen? Is that the progression of this disease or is that my overactive brain bringing me into dark places? And if so (and that is what I think, when I am in a rational state) how do I prevent that? I know the Beacon40 light can help - and even though I’ve brought that device with me, I’m not always using it on the trip - nor am I listening to a lot of music and travelling is an overindulgence of NEW. A bombardment of new people, information and sensation. Is that too much? Is this the end of travel for someone who has been a worldwide explorer? I really hope not. The world is an immeasurably beautiful place despite the best efforts of some of its denizens, and I still haven’t seen enough of it.

There are a lot of really discordant thoughts in this post, but I think some valid questions are raised. I’ve written it in bursts, rather than as a dedicated process, and it shows - so I apologize for the chaos.. But I also think it accurately represents my mindstate now - spinning with new sensory input and ideas, worried about my health and the general state of the world, and wondering - always wondering if my disease is progressing faster.

I am really, for the first time, understanding what living under a death sentence is. I know we all die, and we all are living under a death sentence in some way, but it is different when you’ve been told how you’re going to go - and the pictures painted by those who’ve supported the ones who’ve gone this path before you are so bleak. I also know I haven’t always been as cognizant of these feelings for others that I know who have their own terminal diagnoses, and I apologize for that. Every death sentence is terrible, and those that live under it are suffering constantly despite any brave faces they put on. I’m sure we’ve all had a picture in our heads of our passing at one time or another - peaceful and surrounded by loved ones, I’d bet. But knowing you’re going to die not knowing who you are or who your loved ones are is not the picture you painted is it? Or knowing you’re going to die in constant pain because of liver failure or a virulent form of cancer - and that this is inevitable - is devastating. And yet we must forge on to live the best life we can with the time we have left. And these thoughts that spin out of control even in the best of times must be curtailed. So we try alternative therapies, and we put our best feet forward, and we live, love and walk as hard as we can. But there’s always the question… Am I getting worse? Is it the progression of the disease or is it just a moment in time - or a thing that is happening to and around you? And how do YOU manage it?

Thanks for reading,

Dy.

Now I want to talk a little bit about Alzheimer’s and its general impact on me - and on the world - and what I think needs to change about how things are presented. Alzheimer’s is a sad thing. People who get it get sad, people who love those who are afflicted get sad and people who lose those they love to it are sad - often forever. However, I’m tired of sadness. I’m still here, happy and full of life - whatever I’ve got left. I’m living it to its fullness, and I want to embrace the disease (honestly) and become even more powerful than I ever was before. But I went looking online for paraphernalia - a hat, shirt, postage stamps, etc - so that I could support myself and others with this illness and everything was sad and sappy. I could not find a single item that I wanted to spend any money on. I know that the upcoming Walk To End Alzheimer’s is a joy filled event, and the AIM forum last June was also filled with good cheer - so there are moments of levity surrounding this generally sad issue - but for me, I need them to become the norm rather than an anomaly. I’ve tried, with this blog, to address this disease with as much humor and good will as I can - and I know that many of my fellow advocates feel the same. Right now - I don’t want to be looked at with “sad eyes”. I want to make jokes and tell stories. I want to share laughs and good times - because I’m here now with everything. And I know I won’t always be (and I won’t lie - every once in a while that thought creeps up on me and knocks me down - but I ALWAYS get back up). There are serious issues at play here - and I’m not saying it’s OK to mock me (or others) for forgetting something or using the wrong word or calculating something wrong. That’s not OK. But in general, I appreciate an Alzheimer’s joke like: Alzheimer's protesters march chanting. "What do we want? Better treatment... When do we want it? ...Want what?" and, as I’ve said before, I want my life to be celebrated with humor - which is how I’ve tried to live it. So, I’d love to buy an Alzheimer’s support postage stamp, but I’m NOT going to get this one:

Ever. It doesn’t speak to me at all. And, personally, I don’t know that it helps the cause much. As more of us get this disease earlier, it’s essential to find a new way to present it so that we can continue to live our best lives with a sense of joy - not one of dread. (I know the Alzheimer’s Association is working on that, but it’s not the overarching pervasive presentation.). I’ve got ideas, which (once they are better fleshed out) I will roll out here. But beware - Alzblog merch is coming your way!

And speaking of lives, I finished the Storyworth project, and got my hard copy. If any of you are masochistic enough to want to read even more of my ramblings, let me know and I’ll tell you how to order one.

It’s a neat thing to have. But I’ve moved on, and am now deep into the writing of my book, which I think will be fab! I’ve enlisted several friends (who have graciously volunteered) to help by posing questions they might like to see answered, and will put it out here as well. Although the book will cover the same timeline and trajectory as the blog, it will be different - with much more depth to research and history and less of the political and musical meanderings. It will be my guide for helping people navigate their first years with the disease. So, if you think of something you’d really like me to address, please put it in the comments or a personal message. I’d love to know your thoughts.

I had infusion # 27 the other day.. It went smoothly, with only one attempt at finding a suitable vein needed! Cheers to nurse Catia for the decisive needlework!

Wendy and I were out at a local food fair the other day, raising around $150.00 for the Walk and promoting Alzheimer’s awareness. It was a beautiful day, and we had a great time hanging out and educating people about the disease, the walk and this blog! We had a lovely encounter with the woman who owns Bang Bang Body Arts, who came by, unasked and donated a $100.00 gift card for a Tattoo or Piercing at her shop! This is an excellent opportunity for local folks to get their first (or more) ink or piercing. We’re doing the raffle in a similar way to the Beacon40 one. Each ticket will cost $1.33 paid via a walk donation to: http://act.alz.org/goto/SeanWalk . Multi raffle entries can be done by math. 2 Entries is $2.66, 6 entries is $7.98. 10 tickets will only cost $13.30. You get the picture.

And finally, the winner of the Beacon 40 light (We sold 46 tickets for this item and raised almost $360.00) is: SANDY!!!! Sandy was so happy to get my call that she won! It’s gratifying! Thank you Beacon40 for the generous gift. I hope you get another convert! And remember, if you didn’t win, there’s a coupon available for you to buy one on your own - SEAN80 - which will get you $80.00 off the light!

Thanks for reading,

Dy

The hardest part of the infusion routine, which has filtered into my general bloodwork and contrast dye life, is that my veins are becoming increasingly uncooperative. My last infusion took 4 probing attempts with the needle before a suitable vein was found, and it took two technicians 20 minutes and multiple attempts to get the contrast dye into me for the MRI. I’ve given up on giving blood for now, which sucks (vampire pun intended). But speaking of needles…

I finally took the plunge and got my first ever tattoo, inspired by my recent life. Here it is in all its fresh and surprisingly unbloody and unpainful glory:

I’m really happy with it! I tried to get specific music for it (Your Mind Is On Vacation And Your Mouth Is Working Overtime OR Can’t Find My Way Home) but the artist, who was great, said it made the tattoo far too complex, so I’ll let some of my more knowledgeable friends try to read it and see if it is any sort of song at all. I don’t think so. I also wrote Bill Laswell’s wife on Facebook to see if she (and he) could dig out the score for the bass line of the old Material song Memory Serves, which I wrote about in post 50. Bill and Yoko were as gracious as can be, and honored that I would consider using his music on my tattoo, but were unable to dig out the score, so I moved forward without it. I thank them for trying and for even being open to it. Bill is quite unwell these days which makes me sad.

We had a tag sale this past weekend, during which we promoted, raised funds for, and sold raffle tickets to benefit our Walk To End Alzheimer's Campaign. We were able to raise over $500.00! Our team is now the top team EVER for our specific walk, with over $26,000 dollars raised - but we’re still not yet in the top 50 nationally or at our $30,000 goal. The drawing for the Beacon 40 light is winding down, with the draw being held on September 15. There’s still time! Donate (at the walk link above) in multiples of $7.77 (in honor of the 7,000,000 Americans with Alzheimer’s) to secure a ticket (s) to get this great device! Our other raffles are ongoing as well, but are more local in nature. The walk is on October 26, and I’ll be speaking at the pre-rally!

Speaking of speaking, lots of upcoming engagements. Next week I’ll be addressing the employees of a large company in the nearby big(ish) city as they kick off their walk campaign. They’re a huge donor and I’m honored to be asked. I’m going to be on the TV next week too, doing a program called MassAppeal. Hopefully I’ll be able to secure a link to it, which I will post at a later time. Wendy and I are also working with a local boarding school to get them to bring a team to the walk and help raise money. I’ll be addressing the student body in an assembly in a few weeks. And, we’ve got a fundraiser at a local Ice Cream shop who are offering a percentage of their daily sales as well as an opportunity to set up a table to provide information. So that’s cool! And, I’ll be doing a web based Champion Check In for the local Dementia Friends Network. And I literally just had to decline an offer to speak to Eisai, who makes Leqembi, because I’m already booked that day. I’m hopeful that I can do it over Zoom, because I’d really love to be involved with that one! And I had to turn down a talk at another large company because I’m booked with the aforementioned Ice Cream thing. I’m becoming, at least during walk season, a hot commodity! That’s not a bad problem to have, by the way! Being overbooked is a good thing for me.

But... I’ve also reached out to the Hemlock Society to see if I can do any advocacy work for them! I’ve exchanged emails with the president who seems receptive. This fills a hole for me as the Alzheimer’s Association is purely focused on the cure and better ongoing care and diagnosis (which is a great thing that I, obviously, support 100%). The Hemlock Society is focused on ensuring that those of us with a terminal illness have the right to end our time when we want to - as has been discussed in these pages before. It’s yet another (reluctant) passion of mine. I feel I would make a great advocate for them, because I’m actively doing my best to stay alive and to get healthy, but know that in time I may need to make a choice. I really believe people need to hear about that, from positive forward thinking people like me. And, as we all know by now, I’m absolutely thriving on this. It’s becoming a near pathological need. I can’t sit quietly. I do know that there’s a lot of other stuff that needs speaking on in the socio-political world, much of it I am in profound agreement with - but this is the hill I’m choosing to make my stand on. And so be it.

One day later, I’m editing to add that the Eisai talk might be on, because Nicole, my “handler” for the talk is trying to get the date changed to accommodate me! That’s pretty awesome! Also today, (speaking again of books) I finalized the Storyworth book and ordered a bunch of print copies. That’s been a year long labor of love, and it was awesome reminiscing. I’ve had a pretty darn good life in retrospect! And yet I am glad to be done with that project, because for now, it’s all about the future for me. I want to look forward with my newish positivity and take in everything that I possibly can. Of course I’m going to keep up with the blog, which will continue to document my current state of mind and wellbeing while…

Beginning my next project which will be…

A BOOK!

This blog will be the starting point of it - at one time I thought I’d like to just print the blog with annotations from a year later analyzing my attitude at the time and how I feel now. Wendy would also write her thoughts on the posts in a hindsight view. I do think that would be interesting, but as I said, I don’t want to spend so much time in the past. So I will write a book, entirely new, detailing my first years (ok, so back to the past but shining a different light on it), but chronicling more of how I coped and am coping now and analyzing some of the pathways that got me here, while getting into far more detail on some of the science and medical data that I’ve researched. Maybe a little less ranty and maybe dispensing with some of the music content. In some ways it will be a self-help book, hoping to serve as a positive guide for the newly diagnosed, and in some ways it will be more than that! We’ll see how it turns out. But if anyone has any toes in with a publisher, I’d be grateful for the introduction. I DO NOT want to self-publish this. I think it deserves a real push from a real reputable publishing house. But that’s just me!

I’ll end on this kind of funny note. I wrote, way back in entry number 20, of my trip down to Baton Rouge, New Orleans and Memphis with Jonas. While there we saw the North Mississippi Allstars play at Tipitina’s night club. It was a great show, starting with the opening band who were called Magnolia Boulevard. They performed that night in a stripped down acoustic duo setting and were pretty good. So, when I saw that the full band was playing up here near me, I bought us tickets, and Wendy and I went to the show. Now, click the link above and look at the bearded guitar player. Specifically, look at his hair. Now, I want you to think about this. For this show we saw, his hair was about 4 inches (or more - I didn’t measure it) longer, and was beautifully coiffed. AND he had a fan placed just at his pedal board blowing upwards. Making his hair, all beautiful and shiny, fly in the wind! ALL NIGHT. And he played (well, I might add), and posed, and his hair waved around his head - and I could not get beyond it. And neither could Wendy. After a half hour of snarky comments (and me blowing vaguely into her hair constantly) we had had enough, and left. They just weren't good enough (let’s call them third-tier Tedeschi Trucks Band clones) to suffer the indignities of the photo-shoot hair model. I know it’s shallow, but there you have me.

And, as always, Thanks for reading,

Dy