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I had to really fight to write this article today. Not a typical fight like those you’ve probably experienced in your life, or a fight against pain, but a fight against the complete lack of desire to get the computer out and write.
I looked back at what I wrote on apathy on the 29th of October 2025. It hit me hard. I wrote…
Apathy seems to be a symptom discussed by caregivers more than most, and they often talk about the loneliness they feel as a result.
Yet, on first glance, I didn’t believe this could be a real symptom. It sounded made up, but as I reflect on specific instances and on my general feeling, I can sense it. And when I reflect on this, it scares me. It may however be a bit of a blessing in disguise for patients despite the pain it causes others.
According to CurePSP, “Apathy is a lack of motivation, interest, or concern. It is not the same as depression, although the two can occur together. Apathy is common in PSP and can be one of the earliest signs of the disease. It may appear as a lack of initiative, reduced emotional expression, or seeming indifference to activities or people that once mattered.”
Research indicates that apathy occurs in 50–70% of PSP cases, compared to 70–90% in Alzheimer’s patients, and less frequently in Parkinson’s disease patients during “off” periods from medication.
While PSP is not yet fully understood, it shares the TAU protein with Alzheimer’s. TAU is a protein that helps stabilize brain cells, but in PSP and Alzheimer’s, it becomes abnormal and contributes to neurodegeneration. This overlap in pathology helps explain some of the shared symptoms, including apathy.
That was six months ago. I wrote that I could sense it and that I was scared. I’m not sure what I feel now. That’s rather the point.
Of course, I could tell you and myself that this is a one-off. That this is temporary. That this is just the moment before a hopeful plateau arrives. All of the usual spin that I and others use to justify that PSP is not really happening at the pace it’s happening to us. But we all know that’s, well, honestly, BS. It is absolutely happening.
It’s not for lack of material. I have tonnes of it. Two examples come to mind which, six weeks ago, I probably would have written about within ten minutes of them happening.
The first is yesterday’s fall, the one where I left the brakes off my wheelchair, fell back into it, and managed to gash myself. I would have called it “PSP: Primarily Stupid Patient.” Or perhaps more compassionately, forgetful. Six months ago I would have had that article out before the wound was dry. BTW – I am ok – it was minor.
The second is the micro-freezes. That’s what I’ve started calling them. This morning, dressing my minor wound with my wife’s help, I took hold of the band-aid to attach it to my wounded finger and it just hung there. My hand, suspended. Fingers unable to move in any way, shape or form. A few seconds. Then it passed. Micro-freeze. I said the word to my wife and she understood immediately because she was standing right there watching it happen. This article is not about freezing, it’s about apathy. But it’s worth noting, as I’m doing this live, that even in dictating these words I struggled with micro-freezes just trying to get them out.
These are probably two semi-gold star articles I would have written with joy and glee just a few weeks ago. I mention them only as illustrations of what apathy is actually doing to me. I don’t intend this. I don’t want this. But it’s a change I’ve noticed, and I need to be consistent with my mission, which is to identify and document the changes that are happening to me, and to use this blog to address them. Firstly, for my own therapy and my own fight. Secondly, so that people who are unable to talk, who feel this, can get their message across and be understood. And so that those around them and me, probably more importantly, can understand too. That last part is perhaps selfish. But it’s honest.
I really just can’t get motivated. Not in the tired or lethargic sense. Just, can’t be bothered. WhatsApp messages sit there unanswered. People I care about, people I love, reaching out feels like an effort I can no longer locate inside myself. I wrote about this the other day in a piece called “Struggling to Be Me.” This article is a continuation of that one. And it is really a struggle this morning.
Writing has been my passion for the last few years, almost above all else. And I’m suddenly just not interested anymore. That’s the bit that scares me the most. Getting this article out has been like climbing a mountain. I don’t think anyone can understand or appreciate that, who hasn’t been through this, but it’s an important experience I needed to relay as best I can.
I really hope I bounce back. I hope to bristle with activity, with articles I’m keen to roll out and plans for further books. But at this moment I’m terrified that I’m losing my mojo in the one area where I discovered a new passion, and find myself now apathetic towards it.
I’m pleased to get this article out. I really am. Even if it no longer feels the way it used to.
Now this is just raw determination and stubbornness. Not passion.
