On Feedback and “Is This Me?”

I have often written about the challenges of PSP, but this weekend reminded me that gratitude is not about pretending everything is fine. Gratitude is about recognising the good moments when they arrive, however unexpected they may be.

This weekend had both extremes.

By Shabbat lunch, I felt wonderful. Surrounded by family, enjoying the meal and the conversation, I found myself appreciating just how much joy can still be found in ordinary moments. In those hours, life felt rich and full.

That made the contrast with Friday night all the more striking.

A combination of stomach and bowel problems had completely drained me. I was exhausted, defeated, and barely functioning. I missed Friday night dinner altogether. By the time I finally made it to the dining room, everyone was almost ready to clear the table.

Sitting there with my wife, my mother, and my in-laws, I found myself saying something that has become increasingly familiar.

“I simply don’t believe this is me.”

The people around the table knew exactly what I meant.

PSP has a way of confronting you with versions of yourself you never imagined becoming. There are moments when I look at my life and struggle to recognise the person living it. The gap between who I was and who I am today can sometimes feel enormous.

That realisation is painful.

Thankfully, Friday night was not the end of the story.

With the support of family and some medication that friends helped us obtain, things gradually came under control. By lunchtime on Saturday, I felt transformed. The experience was a powerful reminder that life with PSP is rarely a straight line. There are peaks and troughs, setbacks and recoveries, difficult days and unexpectedly good ones.

In fact, while writing this on Saturday evening, I asked my full-time carer to make his regular smoothie using prune juice instead of milk and yoghurt. Let’s just say the resulting colour was memorable. Sometimes humour remains one of the best medicines available.

The weekend also gave me time to reflect on some feedback I recently received about this blog.

I would be dishonest if I said it did not affect me. It did.

Whenever you write publicly about something as personal as illness, some people will connect with it and others will not. Some readers will find comfort, encouragement, or practical help. Others may simply decide it is not for them.

I understand both positions.

The feedback made me think again about why I write.

The answer is not that I enjoy talking about PSP. I certainly do not write for sympathy, attention, fame, or fortune. I write because living with this disease can be confusing, frustrating, and difficult to process. Writing helps me make sense of what is happening. It helps me organise thoughts that might otherwise remain tangled in my head.

Just as importantly, it allows me to share what I learn along the way.

Whether that is a practical tool such as the nine-card communication board, a strategy that helps me cope, or simply an honest reflection on a difficult day, I believe there is value in sharing experiences that might help somebody else feel less alone.

If it helps even one person, then it is worthwhile.

I am deeply grateful to those who have told me that the blog has helped them, a family member, or a friend. Those messages mean more than people probably realise. At a time when PSP steadily narrows what I can do, the ability to contribute to someone else’s journey remains profoundly important to me.

Perhaps the most helpful feedback I received came from those who said something very simple:

“Do what feels right for you.”

For now, what feels right is continuing to write.

The reality is that PSP is progressive. Life is becoming harder, not easier. There is no point pretending otherwise. Yet alongside the challenges remain love, friendship, family, laughter, purpose, and gratitude.

My principles have not changed.

I remain grateful.

I remain blessed.

Most importantly, I remain myself.

That may sound strange after admitting that on Friday night I no longer recognised the person sitting at the table. But the more I thought about it, the more I realised that perhaps I was asking the wrong question.

PSP has changed my body.

It has changed many of my abilities.

It has changed the shape of my days.

But it has not changed what matters to me. I still love my family. I still value friendship. I still want to help others. I still believe in gratitude. I still try to find meaning, humour, and purpose wherever I can.

So perhaps the question is not whether I am the same person.

Of course I am not.

None of us are the same people we were ten years ago.

The better question is whether I am still me.

And despite everything PSP has taken away, I believe the answer to that question is yes. The circumstances are different. The challenges are different. The body is different.

But the person is still here.