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This isn’t scientific. It is my reality, and I don’t like it. The night before last was brutal.
I couldn’t sleep. Not that I didn’t want to sleep. I couldn’t sleep.
Things spiralled. I became angry. Very angry. I wanted to massively overreact to minor things, although thankfully something still held me back. I became irritable and impulsive.
Then, in a fit of rage, I decided at 5 a.m. that I didn’t need my carer or my wife and set off alone in my electric wheelchair.
There was still enough of me operating normally to turn on a torch, guide myself carefully and think about safety. My wife, who had to come out into the road and see me home, called me, calmed me down and I completed my trip around the block safely.
But it could have been much worse. This was not something I would normally have done.
Behavioural change was clearly part of it.
After finally getting a good night’s sleep last night, I needed to understand what had happened.
I have heard a lot about behavioural change in PSP. I now think I am seeing it clearly in myself, and it is scary.
Knowledge has always been one of the ways I try to get difficult situations under some sort of control.
So I had four questions.
Is this me, or is this PSP?
Does PSP simply magnify my existing strengths and weaknesses, or can it create behavioural changes because of what is happening in the brain?
What behaviours does it actually change?
And if some of these changes are neurological rather than psychological, what can I do about them?
Some behavioural changes really are neurological
This was probably the most important thing I learnt.
PSP does not only affect movement, balance, eyes and speech. It can also affect brain networks involved in motivation, judgement, inhibition and emotional regulation. That means some behavioural changes are neurological symptoms of the disease.
I understand that better when I compare them with physical symptoms.
I cannot walk properly without losing my balance because something neurological has changed. My sense of smell has largely disappeared. My handwriting has changed. My eyes do not always do what I tell them to do.
Behaviour can be affected in the same way. That does not mean everyone with PSP experiences the same changes, or that they happen all the time. But they are real.
It is not simply turning up the volume on who I already was
This is where I think I had it wrong. I assumed behavioural change would exaggerate existing personality.
If you were naturally angry, perhaps PSP made you angrier. If you were quiet, perhaps PSP made you apathetic. If you were impulsive, perhaps PSP made you more impulsive.
It appears to be more complicated than that.
Someone who was highly motivated can develop apathy. Someone who was calm can become irritable. Someone who was cautious can become impulsive.
PSP can affect the systems regulating behaviour, not simply amplify the personality that was already there.
That matters enormously to me and is truly scary.
If I am apathetic, it does not necessarily mean I no longer care. It may mean I cannot generate the initiative needed to participate.
If I suddenly become disproportionately angry, it does not necessarily mean I was secretly furious beforehand.
The brain’s regulation of that response may itself have changed.
What behaviours change?
Research has identified a number of behavioural and neuropsychiatric symptoms in PSP.
Apathy is particularly common.
There can also be depression, sleep disturbance, changes in eating behaviour, agitation or aggression, irritability, disinhibition and anxiety.
Figure 1. Neuropsychiatric symptoms reported in 154 people with PSP. Source: Gerstenecker et al., Psychiatry Research (2013).
Some of these words sound like ordinary human behaviour, but the neurological version can be different.
Apathy does not necessarily mean not caring. Someone may still care deeply but struggle to initiate activity or conversation.
Agitation or aggression, probably the closest research category to what I describe as anger, can mean a reaction appears more rapidly or becomes harder to regulate.
Irritability can lower the threshold for frustration.
Disinhibition and impulsivity can shorten the gap between thinking something and doing it.
These are not excuses. If I upset someone, they are still upset.
But understanding where a reaction may be coming from changes how I think about it.
They can come and go
This was another important discovery. These behavioural symptoms are not necessarily permanently switched on. They can fluctuate. Some people experience them rarely. Others frequently. Some almost constantly.
The research is much better at measuring frequency than duration.
Figure 2. Frequency of apathy reported in 26 people with PSP. Source: Cuoco et al., Journal of Neural Transmission (2023).
So nobody can reliably tell me that an angry episode should last ten minutes or that apathy should last three hours. But they can come and go. That fits what I am experiencing.
There are periods when I feel markedly apathetic.
There are moments when anger arrives frighteningly quickly.
There are occasions when I am impulsive.
And there are other times when I feel much more like myself.
So what can therapy actually do?
This is where my thinking has changed most.
If neurological change is driving my anger, putting me on a couch and asking why I am angry is unlikely to repair the damaged brain system controlling that response.
I do not need therapy to discover why my handwriting changed or why I lost my sense of smell.
Those things have neurological causes. Some behavioural changes may be similar.
But that does not mean therapy has no role. It means the role is different. A therapist may help me recognise warning signs earlier. They may help me identify triggers. They may help me slow down decisions. They may help my family and carer recognise what is happening. And they may help us find coping strategies.
For me, rest often seems important.
For somebody else, it might be distraction, reducing stimulation, changing the environment or simply stepping away.
Just as physiotherapy, speech therapy or occupational therapy cannot cure PSP but can help me function better with it, behavioural support may not remove the neurological change but could help me manage its consequences.
That feels much more realistic.
But none of this happens in isolation
This is the complication.
PSP itself may produce neurological behavioural changes.
But I am also dealing with the psychological consequences of a life that has changed dramatically.
I stopped working far earlier than expected. I spend far more time at home. I have lost independence. I use a wheelchair. There is loneliness, frustration, grief and fear involved in all of that.
There may also be cognitive changes which make difficult situations harder to process.
And I take more than forty tablets a day, so medication cannot simply be ignored either.
That is why I do not think every angry moment or period of withdrawal can be neatly labelled PSP or psychological.
Sometimes it may be one. Sometimes the other. Often it is probably several things colliding at once.
That is what happened the other night.
There isn’t a Ben 1 and a Ben 2
I have sometimes written as though there is an old Ben and a new PSP Ben.
I do not think that is quite right. There is still Ben. But Ben is being attacked on several fronts at once.
Physically.
Neurologically.
Emotionally.
Cognitively.
Socially.
Sometimes that produces behaviour which feels completely alien to me. Some of it may come directly from PSP. Some may be a reaction to everything PSP has done to my life.
I doubt I will ever separate the two perfectly.
Perhaps I do not need to.
The challenge is to recognise what is happening, take responsibility for what I can control, stop treating everything I cannot control as a personal failure, and find better ways of preventing dangerous moments from becoming more dangerous.
The other night frightened me.
Perhaps that is exactly why I needed to understand it. And understanding it is the first step towards dealing with it better.
Sources
• Gerstenecker A, Duff K, Mast B, Litvan I, ENGENE-PSP Study Group. “Behavioral abnormalities in progressive supranuclear palsy.” Psychiatry Research. 2013;210(3):1205–1210. DOI: 10.1016/j.psychres.2013.08.045.
• Cuoco S, Ponticorvo S, Abate F, et al. “Frequency and imaging correlates of neuropsychiatric symptoms in Progressive Supranuclear Palsy.” Journal of Neural Transmission. 2023;130:1259–1267. DOI: 10.1007/s00702-023-02676-9.
• Scott BM, O’Keeffe AG, Lansdall C, et al. “Co-Occurrence of Apathy and Impulsivity in Progressive Supranuclear Palsy.” Movement Disorders Clinical Practice. 2021.
• National Institute of Neurological Disorders and Stroke. “Progressive Supranuclear Palsy (PSP).”
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