“This is Parkinson’s was great for me,” Mona Säfvenbom (61) smiles.

“When you get sick and stop working, you feel like you’re no good for anything. Suddenly, people recognized me on the street! It gave me confidence.”

I first met Mona in the fall of 2010, the year I was diagnosed with Parkinson’s myself. She had been diagnosed three years earlier, at 44. We were at a rehab stay at Fram Helserehab outside Oslo, and in the evenings we’d go skiing through the forest in the moonlight.

Mona had no intention of letting Parkinson’s break her. A real fighter. Meeting her made me want to highlight the lives of young people living with the disease.

Mona was working at a real estate agency when she got the diagnosis. Five years later, she was on disability. Today, she and her husband Bjørn live by the river Glomma in Fredrikstad, just below where it splits in two. I grew up in Fredrikstad, my father was a sea pilot there, and I can remember him once explaining how tricky and dangerous it was manoeuvring the huge ships in those strong currents.

Even for Mona, the diagnosis was like a fork in the river, and it changed her life. So did the medications.

“In the years before my DBS surgery in 2016, I was on the maximum dose of the dopamine agonist Requip—24 mg. It was awful. I became a shopping maniac and had all these strange thoughts in my head.

And I became super brave—I wasn’t afraid of anything. I did a ski race in Hallingdal and came to this huge downhill, and I went for it, crashed, was bleeding, got up, and kept going! I wasn’t scared of anything.

Speaking in public used to terrify me, but suddenly it didn’t bother me at all! Normally, I’m very shy, and eventually, I didn’t like how I had become at all.”

In the years that followed, Mona got worse. She had pain in her arms and legs, she lost weight, and she didn’t have energy to do the workouts.

“DBS gave me a huge boost, especially that first year. But six years later I was at Beitostølen Health Sports Center, and there I realized I’d gotten worse again. I was one of the oldest—and one of the least fit—and that was strange for me.”

Her most prominent Parkinson’s symptoms, she says, are tremors, slurred speech, and most of all slowness—her body just doesn’t want to move. Walking is hard.

“But skiing? That works fine! It’s weird. And biking is easy too—I have good balance.”

She takes 400 mg of Sinemet and works out every day. She’s at her worst if she’s been eating food rich in protein. Protein competes with Levodopa for absorption in the body and transport into the brain.

“Do you have dyskinesia?”

“Yes, my arms kind of flail around. But not like before the DBS surgery. It’s better now that I take less Levodopa.” Today, she takes 10 mg of Requip, and she says it’s perfect for her.

“Today I feel like I am myself again. And you know what? I thought the disease would be worse, And I’ve learned that it’s better to be sick with a fit and strong body.”

But she’s also learned that exercise isn’t the solution to everything. In the evenings she is not well, which really limits what activities they can take part in.

“And that’s what Bjørn hates the most,” she sighs. “Otherwise, he believes that if you can’t do anything about it, there’s no point worrying. He supports and helps me if I need it, but if I start whining, he tells me to pull myself together. No sympathy there.”

“I asked him if I’ve changed a lot, and he said that when I’m low on meds, he notices that Parkinson’s look in my face. Frozen, you know. I see it too.”

“What are your thoughts about the future?”

“I do think about it, but I won’t give up. I want to be there for my grandkids, help out, be someone for them. I keep telling myself I’ll figure this out somehow.

I refuse to give up.”