“It meant a lot to Kjetil to be part of This Is Parkinson’s ten years ago,” says his wife, Turid Eikåsen. “He put words to the invisible symptoms—anxiety and depression—even back then. I think he saw what would become his biggest enemy.”

Their children, Malin (26) and Sander (23), are with her when we meet. Four years have passed since their father died at the age of 45. Life with the disease became too hard to bear.

“I feel like when Malin and Sander are here, it’s easier for me. Then we can tell the story together—put words to things together.”

“He was very aware that mental health is a big part of the disease—for some, not all,” says Malin.

Kjetil Eikåsen was diagnosed with Parkinson’s in 2008, at the age of 32. Malin and Sander were just 10 and 7. After This Is Parkinson’s, his condition worsened. The medications that had helped somewhat were no longer enough. Two years later, he was at the National Hospital for evaluation for DBS brain surgery.

“It was a two-day thing at the hospital and an important part of it was a huge personality test. It was the result of that test that I believe made him ineligible for the surgery,” Turid says.

“I think he lost some hope because of that,” Malin adds. “Like, ‘What’s left for me if the pills don’t work and I can’t get DBS?’”

Kjetil fought the disease as best he could. He tried different diets—almost became vegan to avoid proteins that interfere with medication absorption. It wasn’t just Parkinson’s meds anymore, but also anti-anxiety drugs. The years that followed were a rollercoaster—up and down, day to day, hour to hour.

He spent a lot of time alone at home while Turid and the kids were at work and school. Meeting people became harder for him, his self-image plummeted, and the side effects of the meds grew worse. By 2018, things were out of control. Kjetil was involuntarily hospitalized. The lifesaver that fall was the Duodopa pump, which delivered a controlled dose of medication directly into his stomach.

“It worked really well. They found a stable therapeutic level. But eventually, he figured out he could adjust the pump himself,” says Malin.

Now Kjetil could increase the dose—and he did. This led to higher-than-recommended intake, and Kjetil’s personality and mental health changed drastically.

For Sander and Malin it is hard to talk about the last two years. Their dad had very little sleep, developed paranoid ideas, went in and out of psychosis. By summer and fall 2020, things escalated. Kjetil was unrecognizable.

“He started slipping out of reality,” says Sander.

They had lived with a sick dad for a long time but even after years of illness, they describe him as the family’s rock—safe, generous, caring, funny and positive.

“But standing on the sidelines, watching the person you know best fade away—it’s hard to put into words. It just feels so unfair. All we wanted was to help him,”  Sander says quietly.

Several years have passed since then, but it’s still hard for the family to look back on those dark years. The grief and longing never go away.

“When Kjetil got sick, we decided to create a ‘memory account,’” they explain. “We went on countless trips, both in Norway and abroad, and spent a lot of time at the cabin and on boat trips. And we’re grateful for that now—that we have this account full of good memories to look back on.”

“It was excessive medication use that made things worse,” Turid claims. “We’ve thought a lot about how he might have fooled himself—and others—because he was good at medicating perfectly before appointments with the neurologist. Maybe he wanted to seem in better shape than he really was? That made it hard to see how sick and overmedicated he actually was.”

“Looking back, we really missed closer cooperation between us as family and the healthcare system. We were the ones who knew what his everyday life was really like—and the truth about his medication use—but it was hard to find a space where to share that information.”

“But we don’t want what we’ve told now to make others with Parkinson’s think this is what they have ahead of them. We just want to contribute to more openness—and to encourage people to ask for help,” she concludes.