67: Progress

Well, it seems as if I’ve slowly moved from weekly (or more) postings to monthly. But that’s not because nothing is happening. Loads to report now, but we’ll start with the biggest news. Behold, a picture of what I hope will be my final Leqembi infusion! It’s been 39 infusions over 18 months.

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