53: Belief

I had a really interesting conversation the other day with a gentleman who had suffered an awful stroke that left him partially blind. We talked a lot, he and I (along with his wife, some of our friends and Wendy) about the benefits of self care and general holistic health. I showed them the Beacon40 (discount code: Sean80) lamp, which I have taken with me on a short vacation, and I discussed my perception of the positive benefits of all the light, sound, supplement, physical and mental therapies I’m doing. He then asked me a question that has never been asked of me before.

“Are you confident in your diagnosis of Alzheimer’s?”

Now, I’m not gonna lie here (I never do - I’m not a MAGA politician…). I have wondered that before. I listen to some of my fellow advocates describe their diagnostic journeys and they report a much more rigorous process of discovery than I. I had the pet scan, took a few very simple word tests and behold! I had Alzheimer’s. Other people speak of multi hour neuropsych exams, spinal taps and much more detailed diagnostic evaluation. I have discovered, in my near constant searching for information, there is a class of people who have Amyloid Plaque buildup and do not have Alzheimer’s. They are asymptomatic. Here’s a nice summation of that phenomenon. I certainly do have some level of symptom - but how much of it is simple aging, how much is the newly diagnosed ADHD, which - according to my long suffering wife - I’ve been living with for freaking EVER, and how much of it is the long term effects of my TIA back in 2018? (And let’s never forget the incredibly long period of time that I self-medicated with an overindulgence of illegal recreational drugs as a much younger man), all of which could (and probably did) do long lasting damage to the brain.

All (or most) of my symptoms could, if one were fishing for alternatives, be attributed to some other malady. Tremors? Normal for many adults. Forgetting things and “missing” words? Just getting old. Not remembering those damn 5 words? The same. Sleeping poorly? Apnea, and generalized anxiety due to my diagnosis. Inattention? ADHD and generalized disinterest in what doesn’t interest me. Lack of balance and coordination? Well, I’ve never been a gymnast or anything but I used to feel pretty confident scrambling on a cliff’s edge and could use stairs without gripping the handrails. That could totally be the lasting effects of the TIA. Quickening temper and lack of tolerance for what I perceive to be idiotic? Well, shit. I’ve always had a lack of tolerance for that, and my temper really isn’t that bad any more because I’m far less stressed out about my life. And I’ll get to that in a little bit here. I’m not going to run down every little tic that’s wrong with me and what else it could be. Suffice to say that for nearly anything, there is an alternate diagnosis which could be blamed if one wanted to. I am grateful for the near constant flow of information I get about research into all the “ways” in which we can exacerbate the symptoms of - or delay the onset of - dementia. In honor of our current MAGA administration, I’m now eating DuraCell batteries to enhance the amounts of lithium in my body. (That’s a joke, for all who are tsk-tsking me right now - but I am fascinated by (and following along with) this set of studies, and would jump on a trial immediately if one were available.) Some of it, like this lithium study are immersed in hard science, and therefore fascinating to me (thoughts and prayers go out to all the mice who suffer in this quest for my cure), while others are based in conspiracy based propaganda and paranoia and I discard them unread (and unwatched), while still being able to appreciate the fact that folks from all ideological spectrums are thinking of me, and caring to send me the things that feel meaningful to them. (Just like I will never scoff away a prayer of good thought or health - even though I don’t subscribe myself. It only means someone cares, and you can’t have too much of that these days.)

So… Am I confident in the diagnosis? Yes, I suppose I am. For me it's the grandeur of the combined symptoms. I accept that there is certainly something wrong with my brain. I’ve had two neurologists (one of whom I like and the other not so much) tell me I have Alzheimer’s. My insurance company pays for very expensive treatments, and I've been accepted to (and participated in) several clinical trials. So all signs point to an accurate diagnosis. What I’m not confident in is the proposed treatment outcome. With that I beg to differ.

The other thing that the gentleman who asked me the confidence question said to me, after I had expanded on all the things I’ve been doing to keep my brain healthy, and spoke on how I actually feel better than I did before was:

“It’s working because you believe it will!”

And that, friends, rings really true to me and (at least in part) explains why I feel so good about myself right now (my son Jonas - who’s written in these pages before - told me I was actually scaring him with my intensity, which I took as a great compliment). Now… Don’t get me wrong. I’m not diving off a "manifest it and it shall be - here put this crystal on your chakra” platform. I’m far far too pragmatic for that stuff. But I am so… damned… fully invested in my healing right now that I believe that I am going to defy the odds. I AM going to kick the living hell out of this disease, and I WILL remain the person I am until the people who actually understand stuff put together a cure, and I will be rid of it. And I live that belief every day, and that belief keeps me going, and continuing to strive to find ways to ensure that this all comes to fruition (because the alternative is just far too devastating for me to comprehend - even though I’ve got a solid plan in place just in case). And so far, just over one year in, my confidence is well founded.

Now, people… I’m just going to be super pissed off if some of my avenues for this healing journey are stolen from me by far-right radical politicians and businesspeople who care more about lining their own pockets and “owning the libs” than they do about the lives of everyday hard working Americans. I just received an email from the healthcare service that manages the ACA in my state informing me that:

“Due to upcoming changes in federal law, many Health Connector members will see increases in the cost of their health insurance or changes in their eligibility for financial help paying for their premiums and out-of-pocket costs.”

Now, I can tolerate a slight boost in cost and perhaps a slightly higher out of pocket maximum for my insurance. Many can’t though. And because the folks on the right have convinced people that trans men are a danger to people in bathrooms (fun fact - they’re not!) and that trans women are destroying college athletics (fun fact - there are less than 20 trans women competing in the NCAA - in any sport), or that the poor are staying poor because it’s somehow fun or easier than working, or that it’s the illegal immigrants (which has now somehow become all immigrants (fun fact - WHICH WE ALL STEM FROM UNLESS WE ARE ROOTED FROM THE INDIGENOUS PEOPLE WHO WERE HERE BEFORE US)) who are doing the most criminal activity and “stealing” jobs from joe-blue collar, or that it’s their particular version of fervent (yet unlived) theological belief that words written by MEN over 1500 years ago should guide our lives - and only the words that come from THEIR particular deity of choice - these evil corrupt politicians and businesspeople have been able to subversively spread their hate-filled propaganda-laced agenda across this once great country. And don’t get me wrong, people. None of you who voted for this are actually republican. Not in the way you’ve been claiming you are. You’re supporting fascist liars who are lining their pockets at our expense and laughing at you and stripping you of your own personal liberties while you spew your own hate-filled bile, somehow thinking you are “fighting for America” (fun fact - you’re not)!

Here, the wonderful Heather Cox Richardson, (who I read every day - and you should too) explains the fascist shift better, and with just a tad less bile than I do.

Right now, until Project 2025 (and it IS Project 2025, just like they wrote it and CPOTUS denied knowledge of) actually goes into effect next year, I still have affordable and good health insurance, and there still are avenues (however dwindling) for clinical research, and I will avail myself of all of them (and it). And because I believe in these several things:

• That I DO have Alzheimer's and/or

• That I can defy the odds and/or

• That both traditional western and other less traditional therapies are essential parts of a well rounded healing toolkit and/or

• That people are better than the current MAGA administration thinks they are and/or

• That the lights help and/or

• That the mushrooms help and/or

• That the exercise (mental and physical) helps and/or

• That the Leqembi helps and/or

• That the Memantine helps and/or

• That participating in clinical trials benefits not only myself but potentially millions of others, and it’s the very LEAST I can do and/or

• That everything positive that I can do (including keeping a positive attitude) helps AND

• That speaking out and writing about this disease and ways to embrace your diagnosis with positivity (despite it being an awful thing) is an essential part of my healing process because

  • I want to be helpful

  • It helps me to talk about it

  • It helps others when I do

  • It keep me interested and interesting

  • It’s fun

I won’t stop any of it! And I'll keep adding things to this rather unlimited-in-size toolbox of mine whenever they cross my path. I’ve got two more clinical trials lined up, and am researching several new stimulation therapies. And along with that, I’m going to live the very best, most productive and interesting life that I can - for as long as I can. And am I stressed? About the government and about my long term prospects for healthcare and social security - yes. For the most part, except for my votes, I have no control over these things. But for the things I do have control over? My personal well being? The love of my wife, the caring of my friends and family? No… I don’t stress about that at all anymore. Because everyday I wake up and address my mission, which is to maintain my sense of self until there is a cure and to not live a life of devastation and sadness. And I’m doing that well.

I’m writing this from a beautiful house on an island off the coast of Maine, thanks to the largess of some dear old friends, where I’ve been kayaking, resting, watching other people eat lobster, making new friends, marveling at the beauty and peace of a water based existence, evangelizing about my disease and discussing the decline of the American dream. Before that we saw an old friend who we met while working in China and had a lovely visit to her home. And we’re moving onwards to see some other friends and relatives before heading back home in a few days. It’s been restful, rejuvenating and essential. And before that, we saw, as mentioned in the last post, an avant-garde classical acapella group perform (also with old friends from working abroad - this time in Jordan) one of the very worst concerts I’ve ever seen.

Wendy tells me I have an ability she doesn’t - which is the ability to parse down a bit of music into its component parts and enjoy it for the pieces, rather than the whole. So I was gamely able to point out that a performer could sing really well, or the harmonies in a certain part were excellent, but I was unable to escape the plain fact that the compositions were terrible, and the overall music was pretentious and bordered on idiotic. A huge disappointment from a group that has won Grammys and Pulitzers for their work in the past. Ah well, win some lose some I suppose. This time I lost hard. And thankfully, those I dragged to this abomination harbor no long term resentment. I think.

Thanks for reading,

Dy

The walk link again is: http://act.alz.org/goto/SeanWalk