“The last three years have been absolutely wonderful,” says Rune Vethe. “But many were surprised I did it so early.”

Rune, now 50 years old, is talking about DBS—Deep Brain Stimulation.

Many know him as the man behind Rock Steady Boxing in Norway, ambassador for the World Parkinson Congress (WPC), board member of the Norwegian Parkinson’s Association and more.

There seems to be no limit to what he accomplishes. He pedaled from Brighton, England, to the WPC in Barcelona with Parkinson’s riders from many countries. Recently, he organized and completed “The Parktic Race,” an eight-day ride in northern Norway together with bikers from the cycling club ZWAP—“Zwifters Against Parkinson’s”—a group of people with Parkinson`s who exercise using the interactive bicycle program Zwift.

Even ten years ago I could see how Rune took his Parkinson’s diagnosis seriously.

“My biggest fear was to be unable to be a good dad, and then all of a sudden 15 years have passed and my wife and I have raised two amazing boys, now 18 and 16.

I have made peace with the diagnosis. I won’t get rid of it—the disease runs its course.”

In 2016, Rune, myself, and a group of others traveled from Norway to be a part of the fourth World Parkinson Congress in Portland, USA. In the huge convention center we set up our photo exhibition, "This is Parkinson’s". Rune calls the experience a milestone. There, he met people who had turned illness into advocacy. I took a photo of some of these amazing people as they all look straight into the camera.

“Just looking at that image makes me stronger—the power that those people and the Parkinson’s community represent! I get this intoxicating feeling that we’re going to make this work—this is going to be okay!”

Rune has always been an organizer. After the WPC he joined as an ambassador for the congress. He is also involved with other national and international Parkinson’s organizations, focusing on people with YOPD (Young Onset Parkinson’s Disease).

“What happened next?”

“It’s a stupid and cruel disease—no doubt about that. But the progression is very different for everyone. I’d say mine hasn’t progressed very fast.”

Eventually, Rune developed dystonia in his left foot, twisting it outward. Running with his foot in the wrong position then caused a knee injury. The fluctuations between “on” and “off” phases also became more of a problem. Every few hours he would really struggle to be able to move. Also his voice was getting softer.

At that time, he was taking 12 mg of Requip and 500 mg of Stalevo, plus Madopar Solubile to cover the fluctuations. He also took krill oil, vitamin D, and magnesium as supplements.

“The foot twisting was really a side effect of long-term medication use. To avoid overuse injuries, I was evaluated for Deep Brain Stimulation. The neurologists were pretty clear that it would be smart to start the process early.”

On March 12, 2020, Norway went into lockdown for COVID. The day before, Rune had DBS surgery. The decision to go for it had come after a long process with his wife Gunhild and the family.

The procedure was a huge success—his voice even got stronger. But over time, his articulation worsened.

“Whether that’s DBS or Parkinson’s is hard to say. It’s something I am working on—and something we in the ‘business’ need to work on. Many of us `Parkies` tend to talk too fast—I do too—so I have to remind myself to slow down.

When I do, my articulation improves. I work on this with my speech therapist.”

Rune has become what Swedish advocate Sara Riggare calls a “spetspatient”—a highly informed, proactive patient.

In 2018, he left his job. Well known for his dry humor he says he “restructured his societal contribution.” Advocacy for his own and others’ health became a full-time, unpaid job.

He believes his engagement with the Parkinson`s community plus an extensive workout program have both positively influenced his disease progression.

In his home gym he uses a stationary racing bike. With the bike connected to the online program Zwift he's able to join friends from all over the world as they race through landscapes seen on their screens, pushing each other to go harder.

In summer, he rides outdoors.

“Would you say it is important that people diagnosed with Parkinson’s learn about the disease and how to deal with it?”

“Yes, I think so—while finding a balance in how much you get involved. It can go the other way—you can get completely consumed by the Parkinson’s world. I’ve seen that too. But learning about yourself, studying your own Parkinson’s, and then choosing your own path—that’s something I recommend, because everyone is different.”

“Do you think a lot about the future?”

“How the disease will affect Gunhild and my boys in the future—that I don’t know. My focus is mostly here and now—and maybe six months ahead. I believe we should all be careful not to push away negative feelings, but we can’t live in them either.

I use strategies to handle these things and mental techniques to take care of myself. I know that as long as I feel well my relationship with others will also be better.”