Living with early onset Parkinson’s disease

Ten years ago, I sat before yet another neurologist, having lived in a state of suspended identity since being unofficially diagnosed a few weeks earlier. This was following a year of fruitless investigation into my complaints that my fingers ‘weren’t right. I had been a professional guitar player, so I was sensitive to change. 

Today, however, it was the real deal. The tests were in. The consultation began with an explanation of the therapy the neurologist was going to start me on. “So I definitely have Parkinson’s?” I said. Her reply? “Oh, didn’t I say?” 

“Well,” she said. “You have Parkinson’s.” When finally uttered, those three words first expanded to fill all the available space in my head and then the whole of my being. I was precisely the same person I was when I walked into the consultation room but also totally different. No longer an individual with stiff shoulders and dodgy fingers, I was now a set of symptoms. I turned from person to patient in a flash.

Parkinson's disease is a progressive, degenerative neurological condition currently incurable. It occurs when the cells in the brain responsible for producing dopamine decide, for reasons best known to themselves, to die off. 

Dopamine is a neurotransmitter involved in movement and the risk/reward cycle. The symptoms are many and varied but include the classic bilateral tremor, a shuffling gait, and stiffness, especially in the shoulders and neck. Parkinson's disease is primarily a disease of diminution. It shrinks the space you occupy both physically and emotionally. 

When I told people about my diagnosis, their responses were often asinine. I lost count of how many mouthed the words, "But you don't look ill." Perhaps the most idiotic was, "It's very mild, then." They responded to their cognitive dissonance: I was giving them a new interpretation of me that they couldn't see. But I could see it in their faces. Parkinson's disease scares people, but it's not a death sentence. It's more insidious than that. 

Most of us aren't obviously ill when first diagnosed with early onset Parkinson's disease. We may be a little stiff, a little slow, a little shaky. We may struggle a little too much with everyday actions such as doing up buttons or tying our shoelaces, but we don't actually look unwell. Add to that the fact that Parkinson's disease isn't the first disease that comes to mind when considering a physically fit, active 40-year-old man (such as I was when diagnosed). It's hard not to feel that we are frauds.

Read more: My Dad has Parkinson's

Parkinson’s disease, especially young-onset Parkinson’s (when the diagnosis is before the age of 40, or 50, depending on who you read), is a strangely visible invisible disability. While stiffness, rigidity, and a shuffling gait may seem reasonable for someone in their 70s, when you see someone like me struggling to pack my bags at the supermarket, almost falling when trying to start walking, or shuffling along, perhaps bumping into door frames as I go, it is difficult not to infer a self-administered cause. 

You will spend a long time looking for a young person living with early onset Parkinson’s disease who hasn’t been accused of being drunk. Or been eyed suspiciously by doormen, waiters, shop assistants, or bus drivers as they try to decide whether we’re “on something.” Or one who hasn’t been stared at in the street laughed at. Abused. 

While we understand this, it is impossible not to feel the heat of the glances, the stares, the unsaid opprobrium and think of it as anything other than judgment. It is an irony of the most perverse kind that at first, no one thinks we’re ill, but when our symptoms manifest, still no one thinks we’re sick. There is no sign for people to read. Young-onset Parkinson’s disease may be invisible, but its effects are not. Our symptoms, especially the ‘classic’ tremor, worsen on exposure to adrenaline and cortisol. But with your glances, with your judgment, our disability increases.

Living with early onset Parkinson’s disease has changed my life in several senses, and not all for the worse. It makes life more difficult day-to-day. I need to be more conscious of my general health and fitness than before, which interferes terribly with my leisure activities – cricket especially. Don’t think for a second that it’s ‘the best thing that ever happened to me, though.

But it has presented me with ambitions and opportunities I did not know existed. I have written two books because of Parkinson’s: ‘Slender Threads’ and ‘The Country House Cricketer.’ I have found a community of like-minded individuals who want to make a difference. Somehow. I take some parts of life far less seriously than I once did, and grab the rest with both hands. I very much wish to feel alive while I still can. Perhaps I sense the privilege of living in a way I did not see before.

For me, its real impact is not the stiffness, the tremor, the loss of fine motor control, the fatigue, the way that it makes me walk, or, indeed, any other of its various irritations. The real kicker is the way in which it gradually but inexorably separates the body from the mind.

The moment of diagnosis plunges us into a binary world with infinite shades of grey. This disease of contradictions renders us invisible yet conspicuous, ably disabled, and shakily stationary. It gradually erases the parts that make us unique while making it impossible to see us as anything but the disease.

Early onset Parkinson’s disease doesn’t merely redraw us in the eyes of others; it gradually erases our map of the self. It changes our voice, facial expressions, our movements, our senses: those physical attributes through which we once asserted ourselves. Its symptoms take up more and more of our time. Just as we appear as a manifestation of Parkinson’s from the outside, so it gradually emerges from the inside. We watch ourselves as the shaking palsy becomes all people see in us, and in all that we do. 

Eventually, we fall prey to a crushing sense of auto-alienation. 

Today, I caught a glimpse of someone, in a shop window, with early onset Parkinson’s disease: I did not see me. And it hurt. 

Early onset Parkinson’s disease hangs over you like the sword of Damocles, gradually transforming everything. We can live perfectly well with it for years, keeping its worst effects at bay with exercise, medication, and, often, sheer bloody-mindedness. But underneath, it creeps ever onwards. We know that, sooner or later, it will have its say.

Living with early onset Parkinson’s disease is adapted from Living with early onset Parkinson’s, which was previously published in the Wellcome Collection. It is republished under a Creative Commons license Attribution 4.0 International (CC BY 4.0).