Five years earlier, Johan googled the terms PD and honeymoon. He has a PhD in molecular psychiatry, but it wasn’t in his capacity as a neuroscientist that he was refreshing his knowledge of Parkinson’s disease. A few days before his forty-seventh birthday, a neurologist had provided him and Rebecka with an explanation for why Johan was having difficulty moving his right wrist. Why his fingers tingled. Why he’d been using his left hand to help his right in controlling his mouse.
In a certain small area of a healthy brain, neurons produce dopamine, a neurotransmitter. Dopamine regulates a variety of functions, including movement, motivation and reward. In a brain with Parkinson’s, these neurons start dying off.
They die quietly and painlessly. Typically, the patient’s dopamine producing cells will already have decreased by 80% by the time symptoms of Parkinson’s disease are present.1 For a period, drugs can compensate for the dopamine that the brain can no longer make. This time is known as the disease’s “honeymoon”.
As a researcher, Johan has studied the role of dopamine in numerous contexts. He tells of how he now can observe – in his own body – what a powerful substance it is. How seamlessly it integrates him with his sense of self. In the absence of medication, he starts feeling “low, slow and clumsy” he explains. He illustrates by becoming a rag doll, drooping in its chair. The medication makes him “himself” again, and the feeling is immediate. “Ah,” he says, “this is how it should be.” And the rag doll shakes and straightens up in its seat.
Increasingly, Johan has started to experience dips, the so-called OFF periods, when the medication temporarily stops working. He describes how he deals with these dips: whenever he feels like someone’s turned off a switch inside him, he takes an extra dose of dopamine – and waits.
Then he is switched on again.
Medication isn’t the only thing that helps. One way that Johan strengthens his constitution is with an exercise bike. And his physiotherapist has shown him how to counter the effects of muscle stiffness by exaggerating his movements. And by e-nun-ci-a-ting his words. Johan flings his arms wide and demonstrates how a Johan who’s adjusting for Parkinson’s might comport himself. Then a wry smile lights his face. “Though I was always somewhat of a mumbler.”