“I felt a sharp pain in my chest. What’s wrong with me? Is it my heart?” Johannes was getting worried .

It’s the 30th anniversary of the Norwegian Parkinson’s Association in 2014. It's the opening night of the photo exhibition "This is Parkinson’s" in Oslo, and youth pastor Johannes and his wife Janeth are there. He’s just been diagnosed with Parkinson’s disease. But when the anniversary concert at Kulturkirken Jakob begins, he’s already on the train home.

“It was too much for me,” Johannes says with a laugh. “I was only 37.

That was around the time I started saying no thanks when people wanted to pray for my healing. I’d been through that many times and realized I couldn’t keep pinning my hopes on it—it disrupted the process of adapting.”

“Your hand still trembles, right?”

“Yes, I have a mild resting tremor, especially when I’m stressed, but I think the DBS helped reduce it.”

I’m sitting with Johannes Kleppe (47) and his wife Janeth in their home outside Sandnes. The sun is shining outside, and we’ve just had dinner with their daughters Hannah (16) and Ellinor (12).

“How did the disease progress?”

“It just got worse and worse,” Janeth replies.

“I think many partners say to themselves and their loved ones that it’ll be okay—it’s a way of coping. The whole family is affected. Today, I can hardly remember what life was like before that day in 2013 when we were on our way to the café with the girls and Johannes received a phone call from the neurologist.”

In the years following the diagnosis, the young family has tried to find a way of living that accommodates the illness. Janeth takes on most responsibilities. Johannes slows down, tires more easily, and takes increasing amounts of medication.

The worst part, according to Johannes, was the dystonia in his leg. Janeth disagrees.

“The darkness was the worst. The depression.”

“Yes,” Johannes says quietly. “It was not a good place to be. Not a good place.”

“And for me, the challenge was to support you without being pulled down into that dark hole myself,” she replies.

In the fall of 2021, Johannes is very ill, and increasing his medication even more is difficult. He’s been evaluated for Deep Brain Stimulation surgery, and it’s been decided he’ll undergo the procedure. With DBS (Deep Brain Stimulation) implanted, signals will are sent through two electrodes deep into his brain.

This advanced operation has the potential to radically improve his function. But first, he must stop taking his medications. Now the family sees how bad the disease really is. That’s when the fear sets in.

“I had to take care of the girls, and you, and keep myself going. It was hard.”

Full of hope, Johannes travels to Oslo for the long-awaited brain surgery—but it’s canceled.

Janeth hits rock bottom.

Fortunately, Johannes gets a new appointment a few weeks later. This time, Janeth travels with him to Rikshospitalet. She leaves him at the neurosurgery ward and boards the train. Then she gets a call: the surgery is postponed again.

“That yo-yo experience—it was brutal for her”, says Johannes.

On the third attempt, the surgery is successful. Johannes describes the result as remarkable.

“Mobility returned to my body. But Janeth has been partially on sick leave ever since.”

Last year, he became 100% disabled. The job as a youth pastor was too demanding.

He still does graphic design, a business he started a few years ago, and he’s become an expert at restoring old bicycles. In his workshop in the cycling city of Sandnes, he transforms rusty relics into vintage treasures. They’ve also bought and renovated a camper van named Wilma—a fun project for the whole family.

“Johannes loves taking things apart and fixing them,” Janeth says with a proud smile.

Then there's been some less successful attempts. Janeth once received a homemade gift card for tango lessons. On the back Johannes had written that he “was offereing his body for her to dance with.”

“How did that go?”

“Not so well,” she says, laughing heartily.

“The hardest part is when I’m sick and Johannes is going through a rough patch.”

“We’re very dependent on her being okay,” he confirms. “When she’s not, I get worse.”

“I think many people push the seriousness ahead of them,” Janeth says. “They tell the sick person that they’re fine, that they can handle it. And of course, you should make the best of it—we do that all the time—but if there’s no room to be sad, I think you can come crashing down real hard.”

A tear rolls down her cheek.

“We had to let the grief out. I’ve been disappointed so many times, and I’ve cried when Johannes couldn’t join us for things. But we’ve worked on accepting things as they are.”

Janeth finds it hard to figure out how to give others a clear picture of the disease. People don’t understand it or the many adjustments they have to make.

“I really appreciate it when people ask how things are going, but the answer is very long. You start talking about a few issues, and they think they get it—but they don’t. It’s the kind of answer that could ruin any family gathering.”

“How are you doing today, Johannes?”

“We hope I can maintain a reasonably good level of function. With the combination of DBS, medication, and exercise, and the fact that we’ve found a rhythm, we can manage.”

“Ten years ago, you said Parkinson’s had cast a veil over your joy.”

“Yes, that’s how it is,” Johannes confirms. “It doesn’t work the way it used to.”

“But we manage to find joy in little things—like having coffee in the garden room, admiring what we’ve built together,” Janeth says. “You have to adjust.”

“Is there anything positive to be said about having Parkinson’s?”

“Yes,” Johannes replies. “I think I live a more open life and connect with all kinds of people—whether it’s in the bike workshop or when I work with images and text. I’ve gained a pretty rich life with new acquaintances.”

“When things are tough, you can either curse the darkness or light a candle. My experience is that if I curse the darkness—and I have done that—it’s not a good place to be. Nothing good comes from that.”

“Was it a good thing to be part of This is Parkinson’s?”

“Yes,” Janeth replies. “At the time when we got the diagnosis, there wasn’t much information like that to be found. It meant something to our kids to see their dad involved, and to know that we were not alone in this.”

Johannes is prescribed the following medications: Eldepryl 10 mg, Neupro 4 mg, Madopar 1250 mg, Citalopram 20 mg, and Mirtazapine.
His symptoms: Slowness of movement, stiffness, rigidity, fatigue, dyskinesia, depression, anxiety, reduced multitasking ability, weakened voice and sense of smell.