“What do you think about the person you were ten years ago?”

“I think I was very unsure about how things would go. I had 27 years behind me as a nurse—six of them in the neurology department in Stavanger—before I became an offshore medic. I’d met many people with Parkinson’s who were really ill, so that was in the back of my mind. At the same time, I was on dopamine agonists and probably influenced by them. I was extremely optimistic, felt better mentally, and was living like on a cloud—even though I went on disability that year.

Today I have stopped taking dopamine agonists, and that makes a big difference because they can change your personality.”

Marit Digernes (62) was living with her partner and had grown children when she was diagnosed in 2011, at age 49.

She quickly became focused on figuring out how to train and live well—and spent a lot of time with others who had Parkinson’s. Too much.

“I spent ten years on organizational work and trying to figure out tailored exercise programs for Parkinson’s. I was looking for the recipe—and the recipe I eventually found was to do normal things, like I did before the diagnosis, and not focus so much on the disease.

Now I join regular exercise groups. I’ve worked with an occupational therapist, speech therapist, and physiotherapist because I want to keep my voice and language.”

Her focus now is on family, friends, and grandchildren—watching them play football and handball, being in nature, doing crafts, and being creative.

Marit has theories about what contributes to illness. She believes many of us with Parkinson’s carry unresolved trauma.

“I’m pretty sure many people with Parkinson’s experienced childhood trauma that got stuck in the body—and that we have neurological symptoms because of it. These experiences shaped us, but we can process them through conversations. It has to be with someone who listens, is neutral, and doesn’t judge—so you can reach that innermost layer where shame and secrecy live. You have to get to that layer.

I’m not saying this is a recipe for getting much better—but I’ve done it, and it helped me.”

“Do you think rehab centers focus too much on the physical?”

“Yes, based on what I’ve experienced—absolutely. Movement is always a good thing, but there’s no perfect Parkinson’s workout and no perfect dose of medicine.”

Roger, her partner, thinks Marit is doing well. He doesn’t worry.

“He’s blessed with a good mood,” she says. “And he doesn’t know how to worry.”

Roger now works shorter periods at sea, which is good for Marit. They’ve moved into a smaller home on Stord, south of Bergen.

Like most people on levodopa, her condition fluctuates throughout the day in sync with pills taken every three hours. Her biggest issues are slowness and stiffness, a mask-like face, walking problems, and dystonia in her left foot.

The dystonia makes mornings hard. Her motor skills are generally worse, and she feels her mind works more slowly than before. Her meds are 900 mg of Madopar and 10 mg of Azilect.

“I have less energy than before. I can walk really far if I want—but then I’m completely wiped out and need days to recover.”

That’s why she got an electric scooter—so she can walk the dog without using up all her energy.

“When I’m sitting completely relaxed in a chair, life feels normal. But as soon as I try to move, it’s like there’s enormous resistance in my body. It just doesn’t do what I want.”

“This summer, we took a boat trip to the south coast, and I realized my body no longer cooperates. I got painful inflammation in my hips and legs because my body couldn’t compensate for the waves anymore.”

Marit had to take the train home. The disease is progressing, and she needs more and more adjustments. Everything takes longer, and both her and Roger’s patience is tested.

She’s started considering whether to say yes to DBS surgery if she qualifies—for a few more good years.

“Is it important to have hope that things can get better?”

“Well, I’m an optimist. Every time I leave the neurologist with an increased dose, I think, ‘Now I’ll stay on this for the rest of my life!’ But the disease won’t get better—no, it won’t. You have to live with it as it is and optimize what you have—that’s what I think is important.
My hope is tied to simple things—being able to go to the store, stay connected with my kids, not lose the initiative to care about others.

Life is tough sometimes—and then we adapt.”