”I thought he was a stylish guy! Great eyes!”

Eivind Lowzow comments on the ten-year-old photo of himself.

“But my brother thought I stared too intensely.”

Since creating the This is Parkinson’s exhibition in 2014, I’ve always liked looking at that photo of Eivind with those striking eyes. It reminds me of something my wife noticed in pictures of me long before my own Parkinson’s diagnosis. She called it the “kryptonite stare”—that piercing look, the Parkinson’s stare.

“I have stopped being a crybaby,” Eivind says.

Eivind and his wife Jenny sit relaxed on the sofa. She’s a pharmaceutical advisor at a hospital pharmacy in Bergen, and he was an IT consultant until he became disabled in 2016. They married in 2010. Together they have six children, all from previous relationships. He’s now 60, but the humor and optimism are still there. He speaks more slowly and less clearly than before, and his movements are slower, but his joy for life hasn’t disappeared.

“I can’t run or walk as much, and I hardly paddle anymore—I don’t dare. I notice I’ve slowed down. But at the same time, my mind still hasn’t fully accepted that I have Parkinson’s. I forget! During the day, I might forget to take my meds because I feel fine—and then I crash a bit.”

Jenny laughs at Eivind’s dry humour, but she’s lived with him since before his diagnosis 11 years ago and sees the seriousness.

“Yes, you’re starting to realize more of the limitations. Something has changed this past year,” she adds.

“How is it to watch your husband decline, Jenny?”

“It’s hard. People talk about ‘anticipatory grief’—parents of sick children who they know won’t grow up. I think that applies here too. I know we should live in the moment, but there’s still grief over what I know we won’t do tomorrow.

We already know we won’t be taking amazing trips abroad when I retire.

I’ve booked a hiking trip to Iceland this summer—without Eivind—and that hurts.”

Her voice trembles.

“It’s painful not to do this together, but I also have to take care of myself. The Iceland trip will be with friends.”

Eivind searches for words when I ask what Jenny means to him.

“I don’t think many women have the patience she has.”

He says that when she’s at work, he often plans to do a lot, but when she comes home, he’s barely started.

“What does Eivind mean to you, Jenny?”

“I’m proud of him. He’s so good at being open and engaged about his illness, and that makes everything easier for us. He’ll talk about Parkinson’s in the grocery line, and people learn something and understand more. Anders, you’ve done a fantastic job with the photo project, but then there’s the everyday job for each of us—to show that I don’t look like the hunched man with a cane, but I do have Parkinson’s.”

“Do you ever try to hide your symptoms, Eivind?”

“Never. The day I got the diagnosis, I told Jenny I wanted to show the world what Parkinson’s is. That’s why I called as soon as I heard about This is Parkinson’s.”

“But don’t you ever feel like people look at you and think, ‘He’s so slow—maybe he’s a bit stupid’?”

“No. Never,” Eivind answers. Jenny disagrees.

“There are situations where people wonder, ‘What’s wrong with him?’ I can see it.”

“How interested are you in learning about the disease, reading research, understanding it, Eivind?”

“Interested enough to feel secure about my situation and handle it. And I say yes to research projects related to Parkinson’s and take part in them.”

Eivind now takes 1200 mg of Sinemet and 50 mg of Ongentys. He used to take 16 mg of Requip, a dopamine agonist. For years, these drugs were recommended as first-line treatment for younger patients, but they’ve shown serious side effects in some cases.

Eivind says he hasn’t experienced personality changes or impulse control disorders, but admits he can get stuck on details and not move on.

Jenny believes these issues come in many degrees and says Eivind once had serious trouble putting down his computer, especially at night. Now he’s set up a workshop in the basement where he does some woodworking. He calls it therapy. He also sees a physiotherapist and tries to work out three times a week for an hour each time.

“I’ve retired one physiotherapist and started with the next,” he laughs.

Jenny says the physiotherapist makes a big difference. He’s also been on various training stays, and he’s seen a speech therapist.

“Is Parkinson’s worse or easier than you thought ten years ago?”

“Parkinson’s is crap no matter what. I got a bit better after the DBS brain surgery in 2018, but I know it’ll keep getting worse.”

“I can see where this is heading, but I hope it’s a while before it gets worse,” Jenny says. “I’m in a support group for relatives, and progression varies from person to person.”

“What do you think about the future, Eivind?”

“I’ve always said I’ll make it to 90, have a party, and then go to bed. That’s the goal.

I want to say this to anyone with Parkinson’s: Give yourself time to do what you need to do. Forget about expecting to perform like before. You have to allow yourself to be who you are and do what you can.”