52: Expansion
So… Altruistic masochist that I am, I went back to the final session of the Low Voltage trial that had so deeply messed with me the week before. This time however, I was prepared. I have no immediate short term memory. That’s the standard. So nothing (as has been the mantra in these pages) can hurt me any more that my good buddy Al Zheimer has! (I know…) And guess what happened, dear friends? Yep.. You guessed right. I sucked. Again. But I gamed through it, sixty times. Over and over, never remembering more than 4 or 5 words. But I didn’t get devastated, so that’s a plus. And again… I do this, and will continue to do this for as long as it takes for the scientists to figure out what is the root cause of this disease. I want to be (at the very least) the last generation that has to face this fate. I’m already a step ahead of the folks a few years before me thanks to the scientific breakthroughs that brought us Leqembi and Kisunla - the two Amyloid slowdown infusions that have been FDA approved - and I’m truly grateful for that! But a 30-35% slowdown is just a diversion. It’s not a cure, and I will not rest until there is one (or I have no mind left to give to the cause). So if I have to get sad every once in a while, that’s OK, and I appreciate (deeply) the kind thoughts left on the blog and in email.
Bad news and good news: The bad news is that Team AlzBlog has not yet cracked the top 50 in money raised nationally for all the Walk To End Alzheimer's events running in October and November this year. We’re not even the top team in Massachusetts. We will never hit that (they’re a behemoth, bless ‘em!) But the good news is that we’re less than $4,000 away from a spot in the top 50, and that’s, in part, thanks to you and other friends like you. We have, unlike many of the other top teams, no corporate backing, only a deeply generous circle of caring friends and family. (We’re kind of like a good politician - not taking any “dark money” to support our campaign! <sigh> remember those days? Thanks, Supreme Court, for Citizens United, which sold our great country out to corporate interests and away from the “regular people” like you and me - you should agree with this no matter your political ideology. It’s always going to go against YOUR best interests.) So, consider this, before moving on… One small donation from every reader will help advance research - so that more people can torture me (if that is what gets you going) - , facilitate rural doctors to diagnose early so that Leqembi and Kisunla have a better chance of working, start programs to get EMS, ER, PCPs, police, firefighters and other first responders better trained to handle situations where a person with dementia is involved, and to sponsor more training programs like the ones I’m involved with (some of which will be described in more detail later on). It will also support efforts to ensure that insurance companies (remember “dark money” and the long forgotten “care over profit” mentality that used to exist?) will pay for treatments and for the newly discovered blood based bio-marker test that will vastly speed up the diagnostic process for people. This is good, deep and meaningful stuff friends, and you wouldn’t be reading this blog if you didn’t care. So… http://act.alz.org/goto/SeanWalk is the link, and literally every single dollar helps and is appreciated. I can’t say this too many times: I want to be cured of this disease while I’m still me. That’s the goal. Selfish, sure! But also altruistic as hell! Because if I’m cured, everyone else will be cured too!
Yesterday was a busy day, without me ever leaving my desk!
First, I had a long chat with the good folks at Beacon40 discussing their plans for some new products that seem quite exciting. I’m not sure if I’m at liberty to mention them yet - so I won’t , but the horizon from this point looks pretty cool! As mentioned, I’m running a raffle for one of their lights (which they graciously donated) to support the Walk. Every donation of $7.77 (or multiples thereof) will get you a ticket to potentially win one of these great lights, which are a key part of my healthcare routine. Just click the donation link in the paragraph above and change the donation amount to $7.77 (or 15.54 or or 23.31 or 77.70 - or anywhere in between) to enter the raffle. The drawing will be on National Brain Health Day, which is September 15, 2025. If you want to buy one outright, there is a AlzBlog discount code (SEAN80) which will get you an $80.00 discount! Click the Beacon40 link above to purchase.
Second, I spoke with three wonderful representatives of the Pennsylvania chapter of Alzheimer’s Association about the possibilities of collaborating on some speaking and educational opportunities. I’m already going to be “zooming” into one of their board meetings, so those folks move fast! I like it. I really appreciate the fact that my voice and style are being heard and respected, and am thrilled to spend my time doing this important work and expanding my footprint in the process. And a big shoutout to the good folks from the Masonic Villages of Elizabethtown, Ask and ye shall receive. Not sure exactly when, but I’ll be up in your neck of the woods bringing my singular wit and panache, along with some detailed information about my journey and how I got to this positive state of mind! And, you can look forward to an enhanced relationship with the Alzheimer’s Association in the future.
Finally, one of my fellow members of the MA/NH Early Onset group came up with a plan to interview all members of that elite organization, and I was the first victim! It was a lot of fun, and here it is in all (warts aplenty) its glory:
If you’re interested in learning more about people like me (with Alzheimer’s but out in front and advocating for more) than subscribe to Adam’s channel, as he works his way through the gang. I know I will.
I’ve also begun inquiry (including the sending of medical record releases) into two new promising clinical trials. These, unlike the others I’ve done, are medicine based, but do allow for the continued use of Leqembi during the process (which is one hard firm stipulation that MOST medical trials will exclude you for), so I’m super excited about that. This one is being done by a major hospital, rather than the university trials I’ve done before. So, here’s hoping I get in, and here’s hoping I get the drug, not the placebo, and here’s hoping it works! But, this cements, for me, the rationale that getting the much talked about Inspire device is the wrong choice, as it would exclude me from many of these exciting opportunities. So, I’ve cancelled the scheduled surgery, and will meet with my pulmanologist to go over other options, including discussion of the (now in phase 3 trials) exciting new sleep apnea pill. I’m completely at peace with that decision. Truly, fixing my brain is all that matters to me. (Even though I know that untreated apnea is bad for the brain - so I do have to do something about it!)
I had an absolute shit-show of an infusion experience yesterday. It was number 25 - rapidly approaching a full year of these sessions and yet another MRI - and I’ve not yet had one go so wrong. A real “comedy” of errors, I’d say! It started with the intake nurse forgetting to actually connect the blood pressure cuff to the machine before hitting the start button. It then transgressed on to three attempts to find a good vein to infuse (two different nurses) and then a needle that somehow had to be continually re-adjusted once it was in because my Leqembi wouldn’t flow properly, and ended (probably because of those re-adjustments) with the medication tube coming loose from the needle and dribbling about a quarter of my dose onto the floor of the infusion suite. My neurologist was called, and said, and I quote here, “Thanks for letting me know!”. <sigh> I know that I CARE if I get enough medication, and I hope that this boondoggle won’t mess up anything long-term. I suppose from the somewhat lackadaisical response from the Neuro that it won’t. But maybe a follow-up would be in order? I dunno. Maybe it’s just me.
I mentioned in my last post that a relative, suffering from undiagnosed dementia herself, had moved up near us and we have become her official care team. Wendy called our local doctor to try to get them to take her on as a patient the other day. She was told that they were booking first appointments in - get this - June of 2026! What kind of world have we allowed to be created around us? This is basic medical care, for crying out loud. And it is required that she see a PCP before seeing a neurologist or getting any home care or anything like that. And, I guarantee that the politicians who routinely play with our lives while appeasing the gods of the hungry green do not have to suffer these long waits. Or pay the same costs. Folks, again… This should not be a partisan issue. This is unconscionable, and needs to be changed. And nothing I’m seeing on the docket for the current administration is looking to change things in any positive way for us regular folks. It’s only going to get worse, and I’m pissed. And you should be too. Systemic change is required, and that is a top-down thing. The cost of university, housing, living, and food are too high for young people to embrace an 8-12 year journey through college, medical school and residency. So we’re losing doctors and being foisted down on to Nurse Practitioners (many of whom are great - not denigrating them at all, just the idea that I haven’t actually, after 2+ years, met the doctor who is my PCP according to my insurance coverage) and suffered to wait inordinate amounts of time for care. It's incredibly frustrating.
And finally, on a good note, it’s been (and will continually be) a great period for live music. Last friday for my 62nd birthday, Wendy took me to a nearby town to see the New Orleans funk band Galactic, who put on a rousing show in a beautiful restored theater. They played many originals as well as covering some New Orleans classics. We had a lovely dinner and then walked around this quaint artsy town for a bit. Ran into a street-busker named Robin O'Herin, who played a mean slide guitar. When she asked what folks wanted to hear, and I suggested some Hill Country Blues, she dusted of a great version of Drinkin' Muddy Water (Here performed by the North Mississippi Allstars), which is a personal favorite. I bought her CD, and we had a conversation about Alzheimer’s and supplements. I gave her a card, and hopefully she’ll become a regular reader. It was a nice moment of serendipity. Then, last night I went to see The Dirty Dozen Brass Band, also from New Orleans. They put on a rousing show right here in my hometown at a great new club that I’ve been to many times. Tonight, I’m driving about an hour north to see Tu-Ner, who are most definitely NOT from New Orleans. Featuring former (and current) members of King Crimson, this promises to be an eclectic and bombastic show. Tomorrow, we’re off to see Roomful Of Teeth, an award winning avant-garde acapella group. It’s far enough away to warrant a night at an inn, and we’re meeting some old friends for the gig and dinner. There are more gigs on the horizon, and hopefully, I’ll start to find the time (and motivation) to get back into my lights and music so I can post more about what new stuff (and there’s plenty) is crossing my desk. But until then,
Thanks for reading
Dy
http://act.alz.org/goto/SeanWalk (one more time)