72: Intermission

This morning, at just before 6AM I hit the send button on an email that will, hopefully, alter the course of not only my life, but of the lives of others. Yes! You guessed it. The book, ALZ FIRED UP! has been submitted to my selected publisher, Palmetto Publishing, and should be available for pre-order in paperback, hardcover and e-book formats by late July, with copies available in mid-August. I’ll be working on the audio book version with my old friend Ollie, who is a pro audio book reader, voice actor and overall amazing man. Ollie also writes a substack blog, which can be found here. To say I’m excited about this would be doing a disservice to the word excited. Here’s the cover again, which was realized by my friend and book editor Susan:

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