Okay, let’s talk about the new and spectacular health issues I’m dealing with. Namely, my brain.
Alzheimer’s disease is something that primarily affects people over the age of 65. They’re still trying to figure out what causes it and what can stop it, but there are a few risk factors, including a history of head injuries, clinical depression, and high blood pressure. Well, at least my blood pressure is normal. While there’s a genetic marker (APOE) that points toward a risk factor, it seems to be more of a “greater likelihood than normal” marker rather than a “you have it and you’re screwed” marker.
It’s estimated that 5-10% of Alzheimer’s cases are of the Early Onset variety, with about 60% of those actually inherited genetically, and those cases are known as Early Onset Familial Alzheimer’s disease. The accepted age limit for Early Onset is “before 65,” though most are in their 50s or early 60s while some have been diagnosed as early as in their 30s. I know about this not only from Wikipedia, but also because my father was diagnosed at the age of 57. My father’s father was also diagnosed with it, though I don’t know how old he was at the time.
While there was always a worry in the back of my brain, I recently turned 51 and that worry has evolved into a frantic screaming voice in my head. You know how sometimes you’ll misplace your keys and you’ll think “Oops, must not have been paying attention?” My brain says “THIS IS IT! IT’S STARTING NOW! FUCKFUCKFUCKFUCKFUCK!”
It’s a slightly stressful way to live.
When my dad was diagnosed, there weren’t any ways to test for EOFAD or any type of Alzheimer’s, other than conversations with doctors and memory testing. You’d think that would help, but here’s the problem with that: how do you convince a doctor that having a memory function that’s better than the average population is still worse memory function than you used to have? My dad was very smart and had a sharp and thorough memory. He could tell something was going wrong, we could tell something was going wrong, the doctors could tell he was getting older. Because that’s what happens when you get older – you forget things. Too bad patients, that’s just how life works. It took us a few years before a doctor would finally diagnose him with Early Onset. Again, he was 57 at diagnosis after a few years of symptoms. I’m 51.
Recently, I was reading an article about genetic testing and the various flavors of Alzheimer’s. It stated that for regular Alzheimer’s, they still just had the one gene that would suggest a propensity for something like Alzheimer’s happening. Basically, about as helpful as asking a rando on the street about your future. For EOFAD though, they’ve identified three genes where if you have them, you will get EOFAD. Full stop. When I read that, I burst into tears. Right there, sitting at my desk at work, bursting into tears. Awkwaaaard.
My wife had to get some genetic testing done for a familial thing, so she recommended her doctor. I reached out to him, found out I needed a referral, reached out to my doc, got the referral, called the genetics lab, got asked infuriating questions that showed they had no idea what I wanted or why, waited for a call back, called them back and was asked all the same questions that showed whoever I talked to previously didn’t write anything down, then finally got an appointment: the first of December. Better than the “we’re scheduling into next summer” I was originally told, but still. It’s a long wait for a telehealth appointment to talk about my issues, then who knows what will happen from that point. I’ve seen in a couple of places that two of those three genetic markers are only tested for by people who are doing clinical trials. We’ll see what we get in December, I guess.
In the meantime, I’ve been noticing other things. I’ve been trying to avoid looking at all of those “early signs” articles, because like a lot of things, everyone has at least some of the things on the list. The difference is the degree to which those things interfere in your life. It’s like the people who say they’re OCD because sometimes they keep their desk tidy. You know the type. “I’m SO OCD! Every time I take a drink from a bottle, I just HAVE to take the lid off! SO OCD!” But true OCD gets in the way of just about everything you’re trying to do. That’s what makes it a disorder. I hear that with ADHD too. “Last night I just kept switching through the channels. I’m SO ADHD!” No, you’re not. You’re just bored. While there are good and sometimes great things granted to me with my ADHD, it gets in the way of my life a lot. A lot a lot.
Anyway, I know one of the things is issues with words and language. Sometimes not being able to come up with the word, which I think I’ve mentioned here before. You know the word is there, you can describe the word, feel the word, taste it in your mouth, but it just won’t come. Sometimes it’s coming up with different words that are anywhere from partially to completely nonsensical. I’ve noticed it in my writing (well, typing) in the past, but usually I don’t consciously see it happen and usually it’s a nonsense kind of substitution that someone will ask me about when they read it.
Last week, I had a different kind. We were watching “Moving Art” on Netflix. Well, semi-watching. It’s great background sounds. I had tuned in to what was on the screen, because the episode was in Tahiti and there were underwater segments with all kinds of bright. colorful fish. At one point, I thought about how I’d like to go stare at some of these in person for awhile. Not snorkel or scuba-dive. Hell no. Just watch them from the other side of a big glass wall. My specific thoughts: “I know there’s the place in Mystic, but that’s pretty far away. I wonder if there are any closer fish museums.”
The thought ended there, because it didn’t feel quite right. Not like you’re eating something and you bite down on a cilantro stem or piece of bone, but like you’ve been eating something that’s soft and you find a non-soft bit.
I rolled “fish museums” around in my head for a bit, knowing it wasn’t quite right but not why. Finally “aquarium” popped into my head and while I was relieved that I had puzzled out the proper word, I was also a little sad that the proper word was so boring. I guess I should take some solace in the realization that possibly the creative portion of my brain will be the last to go, or will at least put up a hell of a fight.
So here I am, back to typing on the internet again, just waiting to see if I start typing gibberish. If you see something odd, feel free to let me know. Well, not just yet, because I’m still in “hating web programming mode” and haven’t bothered to look at bringing the commenting system back online. But again, at this point I figure you know me, so you probably know other ways to reach me. How convenient. I’m trying to keep these short (and look how well I’m doing!), so I’ll talk about the actual forgetting stuff in the next post.