Anders M. Leines: After the Image Changed

He means it literally. Parkinson’s differs in symptoms, tempo, cognition, treatment response, side effects, family consequences, economic consequences. It differs by country, by class, by personality, by luck.

For researchers, that heterogeneity is a scientific challenge. For patients, it is existential. There is no single map through the disease.

“You have to get to know your own Parkinson’s,” Leines says. “You can listen to others. But you can’t just copy someone else.”

The thought is frightening, but also, in a limited way, merciful.

“If everyone is different,” he says, “you can also think: maybe it won’t go so badly for me.”

Slowly forward

Over time, Leines has grown wary of a particular kind of hope. He believes in research, treatment and the slow work of science. He knows many of the people doing that work. What troubles him is the recurring promise of a cure just around the corner.

“When I was diagnosed, people always talked about ten years,” he says. “In ten years, we’ll have this or that. You don’t hear that quite the same way anymore.”

The promise did not arrive on schedule. For someone living with a progressive disease, that matters. Scientific time and bodily time move differently. A treatment that is “close” in research terms may still arrive too late for the person waiting.

“Things are moving forward,” Leines says. “But slowly.”

This is part of why the second project matters to him. It resists both despair and marketing. It does not say nothing can be done. It says: look carefully. Look longer. Look at what time does.

A clearer pathway

In Norway, Leines says, it is relatively safe to be open about illness. Workplace protections. Benefits, rehabilitation services, neurologists, patient organisations. The system is imperfect, but it exists.

“Norway is a good place to be sick,” he says.

His own ability to remain at NRK is part of that story. The job has been adapted. Public support covers part of the gap between what he once could do and what he can do now. He is grateful for it, and impatient with narratives that describe only failure.

Still, he believes the system lacks something important: a clearer pathway after diagnosis, more similar to the structured cancer pathways used elsewhere in Norwegian healthcare.

“People have a lot of questions,” he says.

A newly diagnosed patient may leave the neurologist with medication, fragments of information and an overwhelming future. Leines would like to see something more systematic - a way of helping people early, before confusion and isolation take hold.

Through international contacts he has also seen how different life with Parkinson’s can look elsewhere. In some countries, people hide the diagnosis for fear of losing work. In others, stigma remains profound. In poorer countries, care may be inaccessible altogether.

“There are good reasons to hide it in many places,” he says.

The warning was wrong

Years ago, someone warned him against attending a Parkinson’s congress. It would be depressing, they said. Too many sick people. Too much visible decline. The warning turned out to be wrong. Yes, there were sick people. Of course there were. But there were also the most active among them: people still travelling, organising, researching, making films, testing technology, comparing methods, sharing small systems for surviving the day.

The power of such a congress, Leines says, lies in its combination of sorrow and momentum. A sad disease group, but not a defeated one. This is also where patient engagement becomes more than a slogan. At a congress, patients are not merely subjects or beneficiaries. They are participants in the knowledge economy surrounding the disease.

They bring forms of knowledge no clinical trial can fully capture: what it feels like to go off medication in a meeting, what impulse-control side effects do to a marriage, what fatigue does to speech, what stigma does to work. Leines has spent years translating that knowledge into images.

Losing control

At 63, he speaks about the future without theatricality.

“We’ll manage ten more years,” he says. “But it will get harder.”

What frightens him most is not only the body.

“I’m probably most afraid of what happens to the mind,” he says. “Dementia. But losing physical control is also very difficult.”

He is considering advanced treatment, including deep brain stimulation, but cautiously. He has filmed enough medical procedures to know that intervention is not magic. It is trade-offs, uncertainty, risk.

“I’ve seen enough to know what can go wrong.”

For now, medication still works. Not always. Not evenly. But enough.

Enough to sit in a darkened studio and talk for hours about photography, stigma, science, cycling patients, congresses, death and dinner.

When the medication stops working properly, he slows into what he calls “snail mode”. He withdraws. Hides a little.

This, too, is Parkinson’s.

The whole frame

It would be easy to frame Leines’ life with Parkinson’s as a story of loss. It would not be wrong. The disease has taken things, and continues to take them. But Leines refuses to let loss occupy the entire frame.

“Parkinson takes,” he says. “But it can also give something.”

Not compensation. Not meaning. But communities, friendships and encounters that otherwise would never have existed.

“I’ve met a lot of resourceful people,” he says.

This is not decorative optimism. It is accounting.

“Quality of life is everything put together,” he says. “And overall, my life is still good.”

That sentence contains much of what makes Leines worth listening to. Not because it is cheerful, but because it has survived contact with reality.

The photographs that began this work still carry force. Their original argument remains necessary: people with Parkinson’s are not the stock image of their disease. But after ten years - after returning to the same faces, after watching some lives continue and others narrow or end - the meaning has changed.

The first project insisted on visibility.

The second insists on duration.

Together they form a record not only of Parkinson’s, but of what happens when a person with the disease also becomes one of its witnesses.

Leines does not claim to have solved the story. If anything, he has become more suspicious of stories that solve too much.

“The disease itself is interesting,” he says. “But it's the people who really are fascinating.”

Look again.

Then look ten years later.