The Story My Blogs Reveal

I have always been fascinated by statistics. Numbers rarely tell the whole story, but they often reveal things that we either hadn’t noticed or perhaps didn’t want to acknowledge.

After writing 349 blog posts since my diagnosis with Progressive Supranuclear Palsy (PSP), I began wondering whether those blogs contained a story that extended beyond the words themselves. Could they, collectively, reveal something about my journey that I had never consciously measured?

To find out, I analysed every post using recognised sentiment analysis software. There are several approaches to this type of analysis and, although they each use slightly different methods, they all pointed in remarkably similar directions. I also checked the results carefully because I wanted to be sure I wasn’t simply seeing what I expected to see.

What emerged was both encouraging and sobering.

For most of my journey with PSP, my writing remained on the positive side of the emotional scale. Looking back, I take some comfort from that. Living with a progressive neurological disease is never easy, yet despite the physical decline, I was still able to write with optimism, humour and gratitude. There were difficult weeks, naturally, but the overall trend remained remarkably positive.

The graph below tells that story far better than words alone can. It shows that for years after my diagnosis my overall sentiment stayed broadly positive before beginning a gradual decline. The change became more pronounced following the episode of severe neuropathic pain earlier this year, together with increasing problems with my eyesight, the gradual loss of independence and, ultimately, the need for a full-time carer.

In truth, I wasn’t surprised.

PSP is, by definition, a progressive disease. Every year brings new losses, new adaptations and new challenges. I spend a great deal of my time trying to slow that progression. I exercise, work with my therapists, take my medication, adapt my environment and continue searching for ways to preserve both my physical and mental wellbeing. I know I cannot stop PSP, but I hope to slow its relentless advance.

What surprised me was not that the graph showed decline, but that it showed it so clearly.

Without ever intending to do so, my blogs had become another way of measuring the progression of my disease.

Not through MRI scans.

Not through neurological examinations.

Not through walking speed or eye movement.

But through the words I chose, the emotions I expressed and the gradual changes in my outlook over nearly six years.

There was another factor as well. For many months I had a wonderful milestone to focus on: our daughter’s wedding. It gave me something joyful to anticipate and something positive to work towards. Reaching that milestone was one of the happiest moments of my life. Afterwards, I realised I needed another horizon. Not because life had become empty, but because hope always needs somewhere to look.

Perhaps the greatest value of this exercise is not what it says about the past, but what it says about the present. The graph has helped me recognise where I am today. It has reminded me that progression is real and that it leaves its mark in ways that are sometimes difficult to appreciate while living through them.

Perhaps it also explains something to those around me. If I seem a little quieter or a little less upbeat than I once did, it is not because I have stopped fighting. It is because the disease itself has progressed. There is an important difference.

I don’t see this graph as a prediction of my future. I see it as another piece of evidence describing my present. It tells me that PSP is progressing, despite everything I am doing to slow it down. That is difficult to see, but it is also honest.

What the graph cannot measure is determination.

It cannot measure the decision to keep writing.

It cannot measure the decision to keep learning.

It cannot measure the decision to keep laughing whenever possible, or to keep searching for purpose in whatever lies ahead.

The story my blogs reveal is one of progression.

The story they continue to tell is one of resilience.