Akinesia & my advice learned the hard way, twice in 18 hours

Four months ago, I wrote about what I called “Power Downs”, moments when my body decides, without consulting me, to slip into standby mode. Not low power mode. Standby. Everything stops, except my cognition, which keeps running, fully awake, with nowhere to go. I gave them a friendly name because that is what I do, filed it under things I live with, and moved on. I mentioned at the time that the scientific term was ‘Akinesia’. For me, it now needs the name.

It has now happened twice in eighteen hours, with increasing regularity over the last few weeks. Far more importantly, no one that I have seen really talks about what to do about it. What follows are my thoughts and tips, and I welcome discussion, debate, and advice from others.

From what the science says, AKINESIA is not the same as moving slowly. Researchers are clear that bradykinesia and akinesia are separate phenomena. Bradykinesia means slowness of movement, while akinesia literally means an absence of movement. Slowness is a dimmer switch. Akinesia is the power going out entirely, characterised in PSP by freezing during walking, writing, and speaking, and in my case as you will read, during praying. Research published in peer-reviewed literature is clear that the mechanism is tau protein accumulating in the basal ganglia and brainstem circuits and disrupting the pathways that initiate movement. The starter motor fails. The driver remains fully at the wheel.

It is also worth knowing, carefully, because I am no scientist and I am not claiming a diagnosis within a diagnosis, that PSP has multiple subtypes. One of them, PSP-PAGF (Pure Akinesia with Gait Freezing), is characterised specifically by profound freezing in the absence of the cognitive decline seen in classic PSP. Cognition has been noticed to stay more intact than in other subtypes. I am not saying this is what I have. I am saying it exists, it fits parts of what I experience, and patients deserve to know these distinctions are out there, because the right conversation with the right neurologist starts with knowing what questions to ask. With that said, let me return to what actually happened.

Incident 1: Last night I was sitting in my comfortable recliner chair. I knew something was coming. Not a dramatic warning, not pain, just a quiet internal signal that something was not right, a signal I have learned over this journey to recognise. This time I listened to it. I mentioned it to my carer. I was already seated, already safe, with people nearby. When it came, there was time to hit the alert button on my watch. My wife and carer responded, put an eye mask on me (my eyes closed involuntarily), and let me rest. I fell asleep after a while. An hour and a half later I came round, dazed but intact, and intact enough to ask for some ice cream and watch a series with my wife. The system worked because I gave it the chance to work.

Incident 2: This morning, I was praying, sitting in my wheelchair, and I felt that same quiet signal again. Something was off. This time I did not act on it. Perhaps because I was mid prayer. Perhaps because you get tired, on this journey, of raising the alarm. Perhaps because sometimes the feeling passes. It did not pass. The switch was thrown. I could not move or speak, my eyes were forced shut, and I had no chance to hit the button. To me it felt like 10 minutes but I have no real idea how long it was. To everyone around me, I was a man deep in prayer, still, quiet, apparently at peace, and therefore no one paid me any attention.

I was none of those things, although I am slightly jealous of people who do experience moments like that, because my prayer is often much more distracted than it should be. I heard every word of what was going on in the house: people shuffling about, my wife and carer discussing various things to do with me, an alarm clock not being answered. I was fully conscious, fully present, and completely unreachable. Somewhere during those minutes, and I want to say this plainly because I think other patients have had this thought and not said it, I began to wonder whether I was going to come out of it. Not a panic, but a cold, quiet thought: is this reaching a steady state? I was also frustrated that no one was seeing what was going on, until I realised that to all intents and purposes I was facing away from people, doing what I should have been doing at the time, which was praying. I tried my best to repress both the panic and the frustration, focused on breathing, and stayed as calm as I could. Eventually I managed a grunt and gradually came around.

Both times, I had a warning. In one incident I acted on it, and in the other I did not. The outcomes were entirely different. This signal has been there throughout my journey with PSP, if I am honest, a feeling that precedes the event, sometimes by seconds, sometimes longer. I cannot describe it clinically. I do not know whether it is the body registering neurological change before the mind catches up, or something closer to what we would call intuition. This is purely patient reported territory, not any form of clinical marker, but it is real to me, and I strongly suspect I am not alone. If it is real, even semi reliably, then something important should be said. The question is not only what you do when an akinesia episode hits, but what you do in the seconds beforehand, when something in you already knows.

These episodes are becoming more frequent, so it is time for me to put a protocol behind them, just as I once trained with my physiotherapist to fall safely when I was falling a lot, and that training still serves me well. In researching this, I have found that almost nobody talks about how to manage an akinesia episode while it is actually happening. Clinical papers cover the neurology. Long term caregiver guidance exists. What I could not find was a practical, human account of the moment itself, what the patient does, what the caregiver does, and how you get through those minutes.

What follows is my own advice, drawn from my own experience. It is not medical guidance. If you have been through this yourself, as a patient or caregiver, I want to hear from you. If you have the guide I was looking for, please share it so I can challenge what I have written, add to it, or simply compare notes. The more we share, the better this becomes.

For the patient:

The single most important lesson from what I have described is this: do not negotiate with yourself. The moment you feel something is off, act on it. Do not wait to be certain.

• • Get somewhere safe where you are not at risk of falling or harm and ideally alert someone.
  • If the episode is already upon you and you cannot signal for help, focus on breathing slowly and deliberately.
  • Do not fight it and do not make sudden movements. It will wear off, at least so far. I know that is much easier to write than to do. I have been panicky and frustrated in these moments. I am describing what works, not what comes naturally.

For the caregiver:

• • Stillness is not always peace. If someone in your care has been very still and very quiet for more than a few minutes, check on them. A light touch and a quiet “you okay?” may be all it takes. They may not be as deep in prayer as they appear. They may be stuck.
  • If you find them in an episode, stay calm first, because your calm is contagious.
  • Make sure they are safe and not at risk of falling.
  • Do not try to move them suddenly or force a response unless safety demands it.
  • Speak quietly and reassuringly. They can hear you, even if they cannot answer.
  • Encourage slow, deep breaths, and give it time.

The consistent advice I have heard from experienced PSP caregivers is exactly this: do not panic, keep the patient safe, and allow the episode to pass naturally.

I know that for some people freezing of gait is an issue when walking and various ideas like metronomes and a steady beat help. I do not know if they would help in this situation and would welcome any experience from others who have tried them.

There is, as yet, no disease modifying treatment for PSP. Management falls to us, patients, caregivers, and families, to build the protocols the system has not built yet. I am writing this for myself and for others because I know others experience this or will experience it. Keeping calm, not panicking, and not missing the cues will help someone along the way. And if you have better ideas, please share them. I will update and communicate them to others.

Writing this, I am perhaps an hour or two on from the second episode. I feel steadier now than I did then. That cold, quiet moment of wondering whether I would come back is not something I want to sit with for long, but I am glad I said it. Someone reading this will have had the same thought and not found the words for it. We are better prepared now than we were this morning, and that is enough for today.