A Taste of What May Come

There is always a quiet hope that when changes come, they are temporary. That they will pass. That this is just a moment in time, another point on the roller coaster rather than a new direction altogether.

The last few days have felt different.

There has been a shift, and it feels profound.

It is not the increased freezing that concerns me most. It is something harder to define. It feels like a glimpse of what life under PSP may look like at a later stage. A kind of early taste of what may be coming.

For many hours each day, I feel dulled and extremely low in energy. There is a heaviness that is difficult to describe. It becomes hard to smile, hard to speak, hard to make eye contact, and even hard to move. For me, possibly worse, it is hard to type or to write. At times, I feel almost imprisoned within myself.

And then, at other points in the day, it lifts.

Often after rest or sleep, I feel clearer, more present, more like myself again. But the change can return quickly and without warning. It settles in and stays for long stretches.

This is not quite the same as the powering down or freezing that I have written about before. It feels different, almost as if I am slightly removed from the world around me.

I am still trying to understand it.

It is not pain in the usual sense. It is deeply frustrating, but more than that it is sad. I find myself watching my children walk into the room and realising that I cannot properly engage with them.

I am there, but I am not fully with them.

They are getting a version of me that I do not recognise, and that is hard to accept.

I do wonder what they see and what they think. Why Dad is quieter. Why he is not interacting in the same way.

I also find myself avoiding messages from people who want to engage, even for something as simple as a game of chess.

When these periods pass, they are often followed by a release of emotion. Sometimes that shows up as anger or frustration. At other times it is almost the opposite, a sense of happiness or relief, as if thoughts and feelings have been building quietly in the background, waiting for a moment to return.

There are probably clinical terms for this. Apathy, perhaps, or other neurological descriptions.

I have since read that some of this is recognised in PSP. There are names for it. Apathy. Slowed thinking. Fluctuations.

But knowing the name is not the same as knowing the feeling.

These periods do not stop me completely, but everything becomes slower and more effortful.

If I am honest, I feel self conscious during those times. I hesitate to answer the phone or to speak, because my speech feels slower and less clear. Whether others notice it or not, I do.

At the same time, I hold on to the belief that there are things I can do to help. Resting more, sleeping when needed, listening to music, and creating calmer spaces in the day. My hope is that these small actions might extend the clearer periods and soften the more difficult ones.

Perhaps this is temporary. Perhaps it is not.

It feels like a taste of what may come, and that thought stays with me.

I am also aware that others further along this journey may read these words, or hear them read, and feel that this only begins to describe the reality. They may recognise it immediately, or they may feel it understates what lies ahead. If others recognise this, whether themselves or through those they care for, I would be interested to know.

Either way, this is where I am today.

And there is still good within it.

There are still parts of the day where I am able to function, to think clearly, and to feel like myself. In those moments I was able to write a couple of articles, make progress on my book, and do other useful things. At the time, I felt good. Present. Capable.

The fact that I am able to sit and write this now, to blog and to express these thoughts, is proof to me that those good moments still exist and that my cognition remains. For that, I am grateful.

My carer continues to make a real difference, helping quietly, making things easier, taking me for a walk, and being present without ever being intrusive.

PSP is not a comfortable topic. It is not something to dress up or make polished. It is lived experience, and at times that experience is difficult and uncertain.

Today, that uncertainty includes this new feeling, this possible glimpse of what lies ahead.

But alongside that, there is still much to look forward to.

Today I am going to sit with a 3,000 photo album that my daughter had made and sent to me for her wedding. I will go through it and relive a moment that really matters to me, the happiness of the occasion, which I continue to see in her and her husband when they visit.

For today, that is enough. And today matters.