The case summed up Karsten Nestvold is a career man who did well as CEO of Innovation Norway. He fell asleep in a client meeting and had to quit his job. He quickly figured out his next step and became an entrepreneur. Now he sells mustard all over the country. Now he is learning to live with the disease and stays active as much as he can. The disease he contracted is the fastest growing brain disease in the world, according to professional sources. Nestvold says that he has become softer over the years, and reflects on why he wanted to keep the illness a secret. Meeting rooms with sterile walls, powerpoints and people in formal clothes are a large part of Karsten Nestvold’s working day. As director of Innovation Norway in Nordland, many people depend on him. But he was not prepared for the customer meeting in Narvik. Behind him this day he has one of many nights of poor sleep. Nestvold is therefore unable to stay awake during the customer’s presentation. – Then I realized that it was over. I cannot be director of Innovation Norway and sit and sleep in customer meetings. – Openness about the disease is important in order to be met in a good way. Karsten Nestvold is leading by example here, says the Norwegian Parkinson’s Association. Photo: Elisabeth Nestvold Eben He slept so soundly that those around him struggled to wake him. As he regained his composure, he realized that this was the drop that ran over the cup. After several years of secrecy, he chose to call his boss and quit his job. A “late bloomer” Nestvold had a long way to go. The road to the top in working life was built on hard work over a long period of time. Because his schooling in Verdal in Trøndelag, where he grew up, was characterized by bad grades and failing in several subjects. It wasn’t until he was 27 that he met a teacher who cracked the code: Karsten was full of dyslexia. – Then I realized that it wasn’t me that was wrong. Karsten Nestvold tries to stay active as long as he can. He wants to work in the entrepreneurial company until he is at least 67 years old, preferably longer. Photo: Elisabeth Nestvold Eben He picked up Norwegian and English again, and stood with flying colours. At the age of 30, Karsten graduated from the University of Trondheim as the fifth best student, and had no time to lose. – I was a bit of a late bloomer. He became head of Nova Sea, one of the largest farming companies in northern Norway today. Afterwards, it was Innovation Norway’s turn. – When I was 42 years old, I was at my peak. But as he climbed the ladder, his body began to do strange things. Nestvold has tried several medicines to help with the disease. Today he has drastically cut down on the pills because there was another treatment that was better – a brain operation. Photo: Daniel Hong Hansen / news Hallucinating at night There was pain all over his left side, his arm fell asleep when he was taking notes in meetings, and he had to drag his foot behind him. After several strange symptoms, Karsten sees a doctor. There he is told that he has either ME, MS, a brain tumor or Parkinson’s. Legane concluded with the latter. Facts about Parkinson’s Parkinson’s disease is caused by cells in the brain that help strengthen movements being destroyed. The symptoms can be insidious and it can be difficult to get the right diagnosis. Tremors, stiffness in the arms and legs, slow movements and poor coordination limit the ability to participate in everyday activities. The voice is also dependent on muscle control and is also affected by Parkinson’s disease. The disease is developed due to a gradual destruction of brain cells in a small and limited area of the brain. In the beginning, the symptoms are often diffuse. The gait of a person with the disease gradually becomes subbanded, tripping and leaning forward. One can therefore be unstable. Source: NHI.no. – It was the best thing that could have happened from those alternatives, says Nestvold. He gets weaker and weaker engines. The pills he has to take replace his night’s sleep with intrusive imagination and hallucinations. – I could wake up and see a man who was going to take me. So I got up and yelled at him. Nestvold has always liked to stay active. He has no plans to stop doing that. Being active is Nestvold’s best medicine. Photo: Elisabeth Nestvold Eben Nestvold reflects aloud on why he wanted to keep the illness a secret. – I chose a strategy that I thought was right then and there. I didn’t want to show any sign of weakness or anything like that. Today, Nestvold thinks he should have talked more about the disease. But he is far from alone in hesitating about it. Nestvold has been skiing a lot since he got the disease, although he fell many times. In the last year it has become more difficult, so he mostly sticks to golf and paddle tennis. Photo: Elisabeth Nestvold Eben – Not “Duracell-powered robots” Tom Karp is a professor of management and has trained managers for the past 19 years. – Leaders generally have a lot to gain from appearing as whole people with strengths and weaknesses, and not as Duracell-powered robots, he says. But it is more difficult for people in leadership positions to be open about these things, Karp believes. – To get into position, leaders often have to show strength. At the same time, they have to show vulnerability just as fully in order to succeed in getting people on board, says Karp. – I have no idea how many leaders do not want to show weakness, but from my own experience I would claim that there are very few who want to talk about, as well as dare to show, forms of weakness, says Professor Tom Carp. Photo: Privat It is difficult because they have to break with conventional ideas about what the ideal rental is all about. It can therefore be a career risk that many are not willing to take. But within certain limits, there is strength in showing weakness, Karp believes. A strength that inspires trust Tom Karp receives support from psychologist Peder Kjøs. – We want those at the top to be solid, steady, forward thinking and safe. It is the others who must waver and doubt. – You have to hit exactly that window where you are just strong enough and human enough for us to have trust and recognize and trust. Kjøs calls it a difficult balancing act. – I think that in many leadership positions there is room for, and actually good for, showing more vulnerability, doubt and things like that, says psychologist Peder Kjøs. Photo: Kristoffer Myhre Karp and Kjøs agree that there is good value in leaders being honest about things they struggle with. Kjøs points out that in recent years there have been some top managers and politicians who have demonstrated “the human factor”. – That in itself becomes something that gives confidence, but in a more advanced way, because we feel that this person is not that “fake” tough. The brain disease that increases the fastest For Karsten Nestvold, it has been important to come forward with the disease. – I hope that people are not so quick to judge, even if you might stumble a little when you walk, says Nestvold. He himself has been stopped by the police on the golf course for blowing a blood alcohol test in front of a large audience. One of Nestvold’s many trips on the golf course in Bodø. Photo: Elisabeth Nestvold Eben The Norwegian Parkinson’s Association feels that there are many people who mistake signs of illness for being under the influence of drugs. – Karsten’s story is one among many and shows that Parkinson’s has many faces and affects women and men in different age groups. That’s according to senior advisor for health subjects in the Norwegian Parkinson’s Association, Ragnhild S. Støkket. Ragnhild S. Støkket says that many with the disease experience stigmatisation. Photo: Norwegian Parkinson’s Association She states that there are an estimated 10,000 to 12,000 people in Norway who have Parkinson’s disease. – Parkinson’s disease is the fastest growing brain disease in the world. It is expected that the number will double globally in the next 20 years. The association works against the perception that Parkinson’s is an “old man’s disease”. How to handle the disease? Ragnhild S. Støkket in the Parkinson’s Association says that there is no one way to deal with the disease. – It will not be a correct way to handle the disease. Our recommendation is to set aside some time for yourself when you receive the diagnosis. The time should be used for reorientation. That is because there are many new things that must be adapted to each other. – It is not unusual to have to change the working situation as Karsten Nestvold has done, says Støkket. Some experience an existential crisis where the disease becomes a threat to life and the future. But others experience receiving a diagnosis as confirmation of symptoms and ailments. Then it becomes something tangible and something that can be mastered. Throughout the illness, there will be periods where the illness can cause depressive thoughts or episodes. – Gradual loss of various functions, restructuring of life and loss of social arenas are often reasons for this, says Støkket. Anyone with Parkinson’s should not have to deal with it alone. – Neurologists and Parkinson’s nurses can provide guidance and knowledge about managing the disease and treatment options. Got softer with age Today, Kasten has cut back on his medication, partly because of a brain operation two years ago where he had two probes inserted into his brain. The car simply runs on batteries. Or rather current that he adjusts with his mobile phone. – If I’m going to play paddle or golf one day, I turn up the power. Then I have to turn down the current, otherwise I get hyper. On his mobile phone, via an app, Nestvold adjusts the current up and down as needed. Photo: Daniel Hong Hansen / news But even though Nestvold quit his job at Innovation Norway, he still had more to give. He wanted to become an entrepreneur, and became one based on his grandmother’s mustard recipe, which they called “mimmi”. That was the start of Mimi Sennep, a company in northern Norway with a turnover of NOK 6 million in 2022. Today, he runs it together with his wife, Elisabeth Eben. – I fall for Karsten because he is a wonderful man. He is fit, active and involved in everything that is fun, in addition to being the world’s best conversational partner and friend, Elisabeth Eben says of her husband. They met and married after Nestvold fell ill. Photo: Private – It is important for me to stay at work for as long as possible. There will be plenty of hard days, so it’s good to have some people with you who are positive, says Nestvold. Therefore, the days are also filled with activities such as golf and paddleboarding. Nestvold feels far from finished. But the disease has changed him. – I am a strong personality, but I am a little softer now. You can hear more about Karsten’s story in the podcast The Moment:
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Karsten Nestvold got Parkinson’s and became an entrepreneur when he quit as head of Innovation Norway – news Nordland
