Health experience: What we see when we meet people with Parkinson’s disease

He’s always in good form when I see him, and he’s always ahead of time, so I’m embarrassed to be supping my tea when he walks in, having come a good way down from the lifts. He uses one crutch.

He’s here to be filmed. We’re filming five individuals, each representing patients or patient organisations, and not that it isn’t writ large on the others’ faces when they describe their loved ones and colleagues suffering from a given condition, but with Paul you can just see it.

I show him to the couch, but he wants to sit in the chair, so he can get in and out himself. Down he pops and we do the preamble – what I’m going to ask him, just relax and be yourself, and so on – because there’s a lot of expensive kit pointed at you when you’re being filmed, and people have a tendency to try to remember prepared scripts about things they already know backwards.

All this time Paul has been shaking, because he has Parkinson’s disease. It’s less noticeable when he’s standing up, and moving around, but now he’s sitting on a hard plastic chair that cups around him, so the shakes are evident.

Maybe it’s his watch, or his rings, or the buttons on the cuffs of his shirt, but you can clearly hear something rattling off the plastic chair as his whole arms exhibit a pronounced and steady tremor.

The room is perfectly silent except for his voice and the rattle, but there’s a tangible stillness there too, in stark contrast to his shaking.

I don’t need to look around at the lads behind me to know they’re wearing that pinched look people get when they see something that makes them uncomfortable. But when we’re filming, there’s no veneer of routine or mundane little tasks we can politely pretend to busy ourselves with that would allow us to ignore Paul’s shaking, or pretend that we don’t see it, or that we’re not alarmed and affected by it.

Gratitude and pity

I believe what affects us – what we are really feeling here – is a combination of gratitude that we don’t suffer this problem ourselves, and pity disguised as sympathy for Paul, who does. And I know from the way I feel it, or where that feeling comes from, that you feel it too.

That’s what happens when we see someone with Parkinson’s or any other visibly debilitating condition. They remind us about all the really basic things we take for granted. Being able to sit still, or to sleep through the night, or just being able to walk.

These ordinary things might take on the stature of achievements when we see people struggling to do them, but as much as we applaud their bravery and determination, we cannot but feel some measure of shame for how grateful we are not to be like them.

You can’t say that of course, but I think we lose something from this life if we don’t find a way to acknowledge or express it. And perhaps what we lose is something that people with Parkinson’s and others are able to find.

I realise that sounds like well-meaning “lemons into lemonade” garbage, but Paul has told me what he and his friends in Move4Parkinson’s do, which is, among other things, sing in a choir and perform set-dancing in groups.

They do this not for any cause or applause, but because there are measurable medical benefits. There’s a simple beauty to this that’s almost difficult to appreciate, as though you’re getting the briefest woods-for-the-trees glimpse of how profoundly important something as ancient and ordinary as singing and dancing are to being human; as if the magnitude of it is obscured by its own simplicity.

There are simpler things again that the people in Move 4 Parkinson’s give each other. They listen to each other, care for each other and support each other, because their condition has taught them what matters most about life. Not money, success or recognition: just love. Every day, human love.

What do we lose when we marginalise or ignore such groups within our society? A visceral reminder of what’s important about being alive. And how – in spite of all that besets them – can such people sometimes say things like, ‘It was the best thing that ever happened to me’? Perhaps because they spend their lives knowing and doing what matters the most: loving.

What do they mean – these people with Parkinson’s, or any other condition – what do they mean to us as a whole?

They are our heart.

Ken Rogan is the communications manager for the Irish Platform for Patients’ Organisations, Science and Industry. See ipposi.ie. He recorded Paul Carey in advance of an IPPOSI/UCD event.