Johan Hellsten

A Strange Dream

In Parkinson’s disease, the brain’s dopamine-producing neurons die at a steady pace. At 51, Johan Hellsten could choose to pursue spectacular experiences – while he still can. Yet he’s opted for the exact opposite.

Johan Hellsten

Malmö, a city on the southern coast of Sweden

51 years old.

Family

Johan lives with his wife, Rebecka, and their two teenage boys.

 

Diagnosis

Johan was diagnosed with Parkinson’s disease in 2016.

Employment

Johan studied to be a biologist, earning his PhD in molecular psychiatry. Since 2009, he’s worked in the research & development (R&D) organization at Lundbeck. In spring 2020 he became a senior specialist in Patient Insights, a new R&D department that was established to integrate patient and caregiver perspectives into the firm’s drug development and disease activities.

 

Pastimes

In the ’90s, Johan was a guitarist in several bands, that played throughout Sweden. He still plays guitar every day.

On a late summer day in 2020, Johan and his youngest teenage son bike down to the harbour. Their family lives in a Swedish suburb close to the sound, a narrow strait that separates southern Sweden from Denmark. They cast their fishing lines out and catch some perch, which they either throw back or give away. A little later, Johan’s wife, Rebecka, shows up to take a swim.

 

Johan is sitting close to his son’s side. When one of them gets a bite the other comments, if the size of the fish merits the catch.


The water sparkles in the August sun. Rebecka joins them after her swim.

How It Should Be

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. As a rule, the patient’s dopamine producing cells will already have decreased by 60 to 80% at the time of diagnosis. 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 drugs 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 of a mumbler.”

As a neuroscientist, Johan has studied the role of dopamine. 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.

Fingers Became Strangers

Johan has never followed a hard-and-fast plan for his life, and he thinks that makes it a bit easier for him to adjust to living with a chronic illness. In the mid-’90s, he gigged around Sweden with several rock bands and pop groups. At the end of that decade, he left the musician’s life behind and took the first steps in what would become his research career. But he never left behind the guitar.


It was on the guitar that he noticed the first sign of his condition. His fingers became strangers to him, weaker, faltering. He was unable to play with the fine motor skills he had cultivated over the years.


According to Johan, the traditional image of Parkinson’s patients as elderly people with trembling bodies and limbs doesn’t capture the full range of patient experiences. Each neuron is connected to 10 000 others, multiplying into a vast neural network. The course of the disease varies with the individual, and it’s impossible to foresee how quickly it’ll progress. With some people, the facial muscles stiffen into a mask. Others start to fall frequently. A person with Parkinson’s can experience intense muscle cramps. They can lose their sense of perspective, their ability to concentrate. Their initiative. And more.


Patient reactions to the illness are equally unpredictable. Some of them dread the torrent of loss that lies in wait. Johan tells of a lecture by a patient in his thirties who described Parkinson’s as “a slow, torturous death sentence”. Others – especially the ones younger than Johan – defy the disease by driving their bodies to perform feats of extreme physical exertion. 


Johan wants to avoid these responses.

It was on the guitar that he noticed the first sign of his P.D. His fingers became strangers to him, weaker, faltering.

A Comic Strip

At Johan’s house, the past and present interweave. There’s a record player and walls of vinyl LPs. A red Fender Jazzmaster in the corner of the dining room and countless other guitars in the cellar. Shelf after shelf of essays, Scandinavian novels, photography books. Travel guides, graphic novels. A large David Bowie poster over the stairs.


And on the door of the guest bathroom, Johan has taped up a comic strip.


First frame: a diminutive male figure dreams that he enters a bathroom. Next: he brushes his teeth vigorously, spattering toothpaste everywhere. Then: he rinses out his mouth and flashes a big toothy grin at the mirror. And finally: the little man wakes up. He wakes to a world of palm trees and ocean, and he’s riding a hippo and waving a flag as the hippo swims off into the horizon.


Johan has held onto this little tale for thirty years. The paper is yellowed and brittle. 


There’s a lot of his past that he’s been able to carry with him into the present. But what about his future?

When healthy people talk about their plans and worries for the future, Johan tends to keep silent. Instead he just says, “So far, so good.”

Ramones haircut

When healthy people talk about their plans and worries for the future, Johan tends to keep silent. His own future is something he prefers not to think about. Instead he just says, “So far, so good.”He sums up his situation like this: when he was young, he wore his hair long and with a fringe, like the Ramones. There’s little trace of that full head of hair these days. A glimmer of a smile crosses Johan’s face. If he’d lost his hair overnight, he says, it would have been traumatic. He’d feel the same way if his Parkinson’s symptoms all showed up at the same time. But they appear gradually, and he adjusts.


What he has is the present – but how is he going to fill it? A couple of years ago, he and Rebecka saw a one-man show by a Swedish performer who also has Parkinson’s. The performer addressed that exact question. He said that he wasn’t going to climb Mount Kilimanjaro. He’d rather ask his wife if they could make some grilled cheese sandwiches and sit together on the couch to watch a few episodes of a TV series.


That answer moved Johan deeply.


As long as he can, he wants to keep living life as usual: working, playing music, cooking weekend dinners. Trying to persuade his boys to hang out with their parents, and amused that they’d prefer to hit the town. For the time being, he manages to function as before, albeit a bit more slowly now and then. And his limbs haven’t started to twitch and writhe – those involuntary movements that often are a side effect of taking dopamine medication for an extended period.


Every day, he encounters the comic strip on the bathroom door. It’s entitled “A strange dream.” He has no idea what reality he might one day wake up to, but when healthy people say, “So far, so good,” the words signify something different than when Johan says them.


For his fiftieth birthday, he had the face of the little comic-strip man tattooed on his arm. 

Parkinson’s disease facts

Parkinson’s disease is the second most common neurodegenerative disorder and the fastest growing neurological disorder.(1)


The number of people with Parkinson’s disease (PwP) worldwide is projected to double from 6 million in 2015 to over 12 million by 2040.(2)


Parkinson's disease is most commonly affecting people in their mid-60s and above. However, 5-10% of cases start earlier, before the age of 40, so called young onset PD.(3)

Parkinson's disease is characterized by a complex variety of motor symptoms (e.g. shakiness, slowness and stiffness) and non-motor symptoms requiring a personalized care management approach.(4)


Non-motor symptoms like sleep disturbances, fatigue, depression, anxiety and cognitive impairment are common and can have a large impact on the quality of life of PwPs and their care partners.(5)


There’s currently no cure for Parkinson's disease that can stop or slow the disease.

1. GBD 2015 Neurological Disorders Collaborator Group (2017) Global, regional, and national burden of neurological disorders during 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol 16, 877–897.

2. Dorsey ER, Sherer T, Okun MS, Bloem BR. The Emerging Evidence of the Parkinson Pandemic. J Parkinsons Dis. 2018;8(s1):S3-S8. doi: 10.3233/JPD-181474. PMID: 30584159; PMCID: PMC6311367.

3. Golbe LI (1991) Young-onset Parkinson’s disease: A clinical review. Neurology 41, 168–173.

4. van Halteren AD, Munneke M, Smit E, Thomas S, Bloem BR, Darweesh SKL. Personalized Care Management for Persons with Parkinson's Disease. J Parkinsons Dis. 2020;10(s1):S11-S20. doi: 10.3233/JPD-202126. PMID: 32925110; PMCID: PMC7592650.

5. Hermanowicz N, Jones SA, Hauser RA. Impact of non-motor symptoms in Parkinson's disease: a PMDAlliance survey. Neuropsychiatr Dis Treat. 2019 Aug 5;15:2205-2212. doi: 10.2147/NDT.S213917. PMID: 31496703; PMCID: PMC6689087.

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