Two Embarrassments, an Apology, and an Explanation

I’m writing this for two reasons.

The first is to help people living with PSP, and those who care for them, understand that what happened today happens to other people too. Whether it is neurological, psychological or a combination of both is something I’m no longer interested in debating. That’s way above my pay grade and, if I’m honest, it’s above almost everyone’s. PSP remains a disease that is still far from fully understood and, ultimately, for the purposes of this article, the root cause doesn’t really matter.

What does matter is that emotional changes, mood swings and sleep disturbances are all well-documented features of PSP. They don’t affect everyone, but they affect enough people that patients and carers should know they are not alone.

The second reason is much more personal.

It is simply to apologise to the people I upset today.

If this helps just one person with PSP, or one family member or carer understand that they are not alone, then writing something this personal will have been worthwhile.

With that explanation out of the way, I have to admit that I feel deeply embarrassed about the last twenty-four hours.

It started last night.

I’ve known for years that I snore, or at least I’d been told that I did. This time I was actually played recordings of it. Calling it snoring would be generous. It sounded more like a horse in full flow. Not just an occasional snore, but something that would have done any respectable stable proud.

For someone who barely sleeps, it seems rather unfair that, during the few hours I do manage, I keep everyone else awake. My poor wife has to live with it almost every night and, with my in-laws staying with us, they have heard me snoring too.

Listening to the recording was genuinely embarrassing. I felt embarrassed for my wife, embarrassed that my in-laws had to put up with my snoring while staying with us and, yes, perhaps even a little embarrassed on behalf of horses everywhere, because I don’t think they deserve the comparison.

But today’s embarrassment ran far deeper.

My wife had gone out with our daughter and my in-laws while I stayed home with my mother to watch Wimbledon. Everything was fine. My mum had cooked me a delicious lunch, I wasn’t in pain, I wasn’t being neglected and I was being well looked after.

There was absolutely no reason for what happened next.

Yet, out of nowhere, I became angry.

Not just irritated, but genuinely angry. It wasn’t shouting. It wasn’t violence. It came out as sarcasm, snide remarks and a tone that simply wasn’t me. Looking back, I hardly recognise the person speaking.

The frightening part wasn’t just that it happened. It was how suddenly it happened and how little control I felt I had over it. Whether I could have stopped it, I honestly don’t know. At the time it felt as though a switch had simply been flicked.

Once I finally calmed down, my body decided to add insult to injury. The emotional surge triggered one of the worst bouts of nerve pain I’ve had for some time. So not only had I upset the people I love most, I ended up hurting myself as well.

For what?

That’s the question I’ve kept asking myself all afternoon.

My carer tried to reassure me. He told me that, compared with anger he has witnessed in other neurological patients, mine was actually quite mild. There was no violence, no aggression and no threats. It was unpleasant rather than frightening.

That is some comfort, but it doesn’t erase how I feel.

I’m embarrassed by the way I behaved towards my wife. I’m embarrassed that my mother, who had spent the day looking after me and cooking me a delicious lunch, had to witness it. I’m embarrassed that my daughter and my in-laws came home to find me like that.

The pain wasn’t mine alone. I, with to whatever extent with PSP, caused frustration, upset and hurt to the people who love me most. Then, as if that wasn’t enough, the emotional outburst triggered severe nerve pain, leaving me in physical pain as well.

Today wasn’t just difficult.

It was humiliating.

The hardest part is that I simply don’t recognise the person I became for that hour. It wasn’t the husband, father, son or father-in-law I want to be. That is why I find it so upsetting, and why I feel the need to apologise to everyone who had to experience it with me.

One thing I hear repeatedly from carers and from other people living with PSP is that this can happen. Part of it is the understandable frustration of becoming increasingly trapped at home while life carries on around you. But part of it is also the disease itself. PSP doesn’t just affect movement. It can also affect emotions, judgement and emotional control.

I’m very reluctant to blame everything on PSP.

But today didn’t feel like me.

That doesn’t excuse my behaviour, and it certainly doesn’t lessen the hurt I caused. I owe my wife, my mother, my daughter and my in-laws an apology. They did nothing wrong. If anything, they were doing everything right.

As I write this, the nerve pain is beginning to ease after taking medication. The emotional pain, and the embarrassment, will probably linger a little longer.

I wanted to document today because this is another side of PSP that people don’t often see. Rational, thoughtful people can suddenly experience extraordinary mood swings that are completely out of character. The people living with the disease suffer from them, but so do the people who love and care for them.

That wasn’t me.

Or perhaps the more truthful way of putting it is this.

It was me, but it was me through the cruel filter of PSP.

I can apologise for what I did.

I cannot apologise for having the disease.