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PSP is frightening.
It is a disease that slowly takes things away: balance, speech, movement, independence, certainty. When people think about a condition like this, they understandably focus on the big things. The dramatic things. The neurological things.
But today, if I am honest, it is simply my knee and thigh that are bothering me, especially when I am on the move.
Just my knee and thigh.
There is something almost absurd about that. I am sitting here with a rare degenerative brain disease, a wheelchair and a full-time carer, yet one of the things affecting my quality of life most at the moment is a painfully ordinary knee and thigh.
I know a little about knees already. Back in 2007 I had an ACL replacement, so this is not completely unfamiliar territory. But this feels different. I do not think there is anything structurally wrong. I have not fallen. I have not obviously injured it. Yet the pain is significant and increasingly limiting. Over the weekend it became acute, bad enough that I wrote about it separately. It feels nerve related rather than structural. My therapist thinks it is most likely neurological, or possibly the result of muscle rigidity and atrophy from long-term wheelchair use. With PSP, the two are hard to separate.
It is affecting how far I can travel in the car. It is affecting how long I can comfortably sit in the wheelchair. Even short distances now feel calculated.
Today I went out for a walk with my wife, carer and dog. It hurt almost immediately. I pushed on for as long as I could. I was walking in just my socks, as I am doing at the moment, because shoes reduce the legroom in the wheelchair. It made very little difference.
And that, in many ways, is what degenerative illness actually feels like.
Not every day is dominated by existential thoughts or catastrophic decline. Sometimes it is simply the accumulation of small physical frustrations. The body adjusts awkwardly to new realities. Muscles compensate. Posture changes. Joints react. Mobility aids solve one problem while quietly creating another.
I suspect this pain is a mixture of neurological change, altered movement patterns and the physical consequences of wheelchair life. Perhaps there is also some simple wear and tear mixed in too.
The truth is that I am not sure it matters very much exactly where the pain comes from.
Pain has a way of shrinking the world regardless of its source.
What strikes me most is how easy it is for these ordinary symptoms to be overlooked. People hear a diagnosis like PSP and naturally focus on survival, progression and prognosis. Those things matter enormously. But quality of life is often decided in smaller places: whether you can sit through a car journey, walk the dog for ten minutes, or allow your body a small moment of normality without being punished for it afterwards.
If something limits your movement, drains your energy or quietly wears you down day after day, it becomes important very quickly. Primary or secondary, significant or minor, these are categories that dissolve the moment you are living inside them.
So yes, PSP remains frightening.
But today it is my knee and thigh that are weighing me down.
And strangely enough, that feels like a very normal human thing to say.
