PSP Through Two Videos: Pure Joy and Sheer Terror

I have never really shared raw video on my blog before. I usually avoided it. But today I feel I have no choice. I intend not to share again.

I want people to see what PSP can actually look like, even if only for a few seconds. At the same time, I also want people to understand that even within this disease there can still be moments of extraordinary joy, love, and meaning.

These two videos were taken just three months apart.

The first video is from my daughter’s wedding. I was dancing in my wheelchair and, honestly, I felt like the happiest man alive. Subjectively, of course, but that is genuinely how it felt. I may have been physically limited, and I completely crashed afterwards and had to be taken home, but emotionally I was soaring. It was one of the great high points of my life and, strangely enough, one of the great high points of my PSP journey too.

Then there is the second video.

This morning, after what was actually a reasonable night’s sleep, I was being helped into my chair when something suddenly changed. My body effectively shut down.

My eyes closed involuntarily. My arms became rigid. I could barely move my mouth. I was fully conscious, yet trapped inside myself for around forty minutes, according to my wife.

At the time, I genuinely thought I was speaking relatively normally. Watching the video afterwards was deeply unsettling because it made me realise that “speech” in PSP becomes something entirely different. The sounds may technically be words, but they are no longer communication in the way I certainly recognise.

At one point I managed the smallest possible fist bump with my daughter using only my little finger. Even then, I genuinely believed this state might be permanent. I briefly seemed to recover once, only to slip straight back into it seconds later.

In the video, you will also notice that I am wearing eyeglasses, sunglasses, headphones, and a cap. None of that is accidental. The light and noise in the house can become overwhelming during episodes like this, and these layers are my attempt to shield myself from sensory overload while still remaining present with my family. By the time the video was taken, I had regained enough control to communicate, albeit in a heavily slurred way. My wife noted that, although my voice was very soft, I was still able to convey what I wanted her to do to help me, which is as much a comment on her ability to understand me as my ability to be understood.

Eventually, slowly, I regained movement and enough control to eat breakfast with my wife. About an hour later, I was dictating this article.

One shows joy, celebration, family, dignity, and life.

The other shows the terrifying reality of PSP.

And the hardest part of all is knowing that this disease only moves in one direction. Yet, as my sister said after spending the day with me, I remain “surprisingly upbeat” and apparently “still annoying.”

It is frightening to think about what may still lie ahead. To imagine sitting in darkness, unable to move properly, unable to communicate properly, while life continues around you. Your children getting ready for school or work while you are physically present but increasingly unable to participate in their lives.

People often ask me how I feel.

Right now, if I am honest, I mostly feel numb.

But I also feel strongly that people need to understand what PSP (for me anyway) really involves. These two short videos probably explain the disease more powerfully than anything I could ever write.

That is why I decided to share them.

I am not sure everyone will agree with that decision. Some people would rather these moments remain private. I completely understand that perspective. But for me, writing about this disease and confronting it openly is an important part of how I fight it.

And I am still fighting.

I do not know where things go from here. The acceleration of decline is frightening, far more frightening than I usually admit publicly.

But I will continue doing everything I can to preserve my quality of life, my dignity, my health, and my connection to the people I love for as long as possible.

I debate whether to call this a battle or a rout.

Today, at least, I am still calling it a battle.