56: Causation

I’ve touched on this concept briefly before, but I want to do a slightly deeper dive on this. And that is the question of what is a symptom of Alzheimer’s and what is a reaction to having Alzheimer’s. In this context I’m going to talk a little about Anxiety, and, because it’s me, it will start with an anecdote. And also because it’s me (and I’ve now read the entire post I’ve written) it’s going to spiral a bit into other thoughts and topics.

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.