Scrabble, crossword, Bananagram experts and those in the medical worls (or maybe lots of people, just not me) probably know this word, I didn’t. I’ve been noticing a new characteristic of late which I simply abhor, and it turns out it’s called lability.
I found it in a research report yesterday, and it described exactly what I’ve noticed for a while: lability (emotional lability, Scrabble score of 13, not great, I’m told). The word traces back to the Latin “labilis” (from the verb labi, meaning “to slip” or “to glide”). It entered English around the mid-15th century via Middle French “labilité”, initially describing something prone to slip, liable to error, or unstable/inconstant. The key word is unstable, as you will see, which is why I explained its etymology.
I’ve been noticing regular, uncontrollable mood swings, incredibly rapid, as well as significant frustration and irritation to loud (or even soft) noise for months (I’ve written about it a few times). It comes with huge feelings of guilt and worry that I am changing, because I’ve worked hard to be a pretty well-behaved person (although massively impulsive). I haven’t felt this kind of rage since I was a young teenager (and that was definitely not PSP 😊).
Like all of us, I thought it was ‘me’ in my head, lack of sleep, fear, anxiety, retirement. It probably is (or was), but in PSP, there’s significant research that says, and I quote: “It’s not *you* being moody, it’s brain changes (frontal-subcortical damage) disrupting emotional regulation, leading to sudden, intense reactions that don’t match the trigger.” Lability is an early emotional flag under personality changes which according to the research I read most PSP patients are affected. It is progressive but manageable with patience and therapy.
In my mind, it’s a bit like my eye clinic visit (mentioned before): serious vision issues (yesterday, I couldn’t see my computer screen without 50%+ blur, even with reading, prism, or normal glasses). They said, good news, there’s nothing wrong with your eyes. But your brain (the bad, bad news) and its communication, wiring is causing it.
So too with this behavioral change: It’s not me (at least in this case, there’s a lot that is me), but actual brain changes.
I have no doubt people will mutter, “We all have that, it’s normal.” Let me say clearly: if you try it (and the rest of the PSP symptoms, with its pretty terrible life expectancy), then you’ll know it’s different.
Knowing this is good and bad…
Bad: It’s clearly another element of PSP and it terrifies me as it is an ‘emotional’ one. Very well-researched emotional changes generally kick in after physical (e.g., balance, slowness, wheelchair) and optic changes. They scare me because, alongside cognitive changes (which THANK G-D don’t seem to have set in), they’re much more about me and who I am. This feels even harder than the physical changes, and I have to really battle them, but it’s clearly much harder when it’s actual neuro change than psychological (though I don’t dismiss this as a factor for so many of us one bit).
Good: At least I know what it is now which is important to me beyond words, and immediately, I had a small but very significant win yesterday understanding it. I really felt it yesterday afternoon, a few hours after a choking incident (separate and also not good), and with a wedding for the son of very good friends in the evening. I said the classic, selfish “I’m not going” line, but thankfully, it passed after a sleep, and to the huge credit of my wife, she suggested softly that I really should try. I went, and we had a really beautiful time (it was a fantastic wedding and bizarrely I got into conversation with his colleagues who are doctors/professors at the hospital I am treated at). This proves another fact – that you should generally listen to your wife (:-)), possibly the main take home.
We even came up with a safe word to signal when this is happening and see if it helps calm things down.
Why is this important for other people? It obviously logically makes complete sense that with a terminal, progressive, and rapid brain condition, it will impact ‘wiring’ not just on the physical body but on the emotional one. People, like me, too often dismiss emotional symptoms, but, whether through lability for PSP or trauma or depression for other people, I know (and many of you know) they often hurt more, and the dismissing them by other people often makes it much worse.
Like all other symptoms (on top of factors like lack of sleep, anxiety, stress, etc.), this is now on my radar. With my family and friends aware, I hope to minimize it and learn to cope.
I’d love to hear from people, caregivers, professionals, patients, about their ideas, but please avoid insensitive ones like “we all have it”, that will definitely trigger my lability.
P.S. There’s a second new word I learned yesterday called confabulation (unintentional false memories from brain gaps), thankfully, I don’t seem to have it yet, so hopefully I’ll never have to write about it.
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