“I think I was naïve back then. I didn’t know what was coming. Maybe that was just as well,” Morten says today.

“But you already described back then that the disease would keep taking more and more?”

“Yes, but I didn’t really understand what that meant.”

I know Morten Bremer Mærli (58) as a striking man—tall, athletic, popular with women. He’s a senior advisor in the Norwegian Parliament’s Security Section, an expert on nuclear non-proliferation—and he has Parkinson’s Disease. He’s been open about that ever since his diagnosis in 2004, at just 38. He has a daughter and lives alone.

“What does your job mean to you?”

“My job is important to me.”

“Is the disease worse or better than you expected?”

“Worse.”

He says something else, but I can’t quite catch it. Morten has developed severe speech problems. Both strength and clarity are gone. Most of this interview is done in writing.

Right now he is trying out a tablet that speaks what he types. His fingers move slowly, and every conversation takes time. It annoys him—but sometimes it’s unintentionally funny.

A few weeks earlier, we were at a café by Frognerkilen in Oslo, near his home, talking about nighttime bathroom issues with Parkinson’s. Suddenly, his little speaker blurts out what he just typed: “Have you tried a pee bottle?” Half the guests at the tables can hear it loud and clear. We laugh.

“Losing my voice is the worst. I think it’s difficult to understand how hard this is unless you experience it. Combined with a blank face.”

In the years following This is Parkinson’s, Morten gradually got worse. He noticed it while at Rock Steady Boxing, where he’d been working out since the beginning.

He says his disease progression is classic: increasing slowness and stiffness, reduced balance, constipation, drooling and a mask-like face. And then there’s that hyperactive, moody bladder.

Morten is one of eleven in the This is Parkinson’s group who had DBS (Deep Brain Stimulation). In 2017, electrodes were implanted in his brain, sending impulses from a control unit under his chest skin to a tiny area deep inside his brain.

The technology reduces Parkinson’s symptoms.

“I always knew I’d do DBS—there was no real doubt about that. DBS is the best we have today for Parkinson’s. If people shake their heads at it in a hundred years from now, so be it.”

But getting a better life with DBS didn’t come easy. Around this time, Morten had found love. Eva was a film director, and they were happy together. But then Eva was diagnosed with lung cancer—the same day that Morten was admitted for surgery. The procedure he faced wasn’t risk-free either.

Through his job, Morten was used to risk assessments, and he knew DBS could go wrong. Electrodes must be placed with extreme precision. The surgery went well—but afterward, things started going wrong. He could feel something wasn’t right. The wound was infected.

“They were able to trace the infection along the wires from the chest unit up toward the skull. It was heading for the brain. I was given heavy antibiotics, but it didn’t help—everything had to come out, even the electrodes, before the infection reached the brain.”

The next year, he was back on the operating table. But again, things went wrong.

According to Morten, the wrong type of electrodes were implanted. Meanwhile, Eva’s cancer worsened. The following year he had yet another surgery. The electrodes were removed and replaced with the correct type. After that, his motor skills improved significantly.

But now Eva was admitted to palliative care at Lovisenberg Hospital—and that’s where she died. At the funeral, everyone could hear how Morten was struggling to speak.

“I tried to get a fourth DBS surgery because of my failing voice. The neurosurgeons refused—partly because of scar tissue in my brain from the previous operations.”

“How satisfied are you that you did DBS?”

Morten sighs. He types:

“I have mixed feelings. The doctors say my speech problems are from the disease, but it’s strange they came so soon after surgery. The consequence of all this is that I withdraw—socially and at work. I’ve had strangers assume I’m mentally disabled because I can’t speak.”

“Can you manage daily life on your own?”

“Almost. I have a BPA (user-controlled personal assistant) seven hours a week for cleaning and cooking.”

“Medications?”

“I take Levodopa, Nicotinamide, and antidepressants.”

“Are you bitter?”

“No, I’m not bitter. Why should I be? Sure, I could have done without the negative DBS experiences, but I’m grateful for all the support and care I’ve received—and I’m very glad I live in Norway if I had to get Parkinson’s.”

Morten says it’s a fight—but the fight has changed. At first, it was about not looking sick. That’s impossible now. Now it’s about managing daily life, getting to work and training.

The workplace provides social life, structure, and meaning. It feels good to say he’s still working—20 years after diagnosis. His motto: “I stumble often, but I never fall!”

“Any advice for young people with the diagnosis?”

“Yes—take very good care of your partner! They deserve it and may quickly become your most important support.”
“What do you think about the future?”

“Those thoughts come when Parkinson’s hits hard—when I can’t get out of bed or when I’m actually lying stretched out on the floor after a fall. In such moments it’s easy to start thinking about ending up in a nursing home with 24-hour care. I sometimes dream about moving somewhere warmer—winter feels harder and harder here. But I think it would be lonely without a voice, without facial expression, without conversation.

So maybe I’ll just say—it would be nice to get a match on Tinder.”