December 8, 2022

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ALS: - Lost both brothers:

ALS: – Lost both brothers:

On October 4, 2019, middle-aged brother Lars Dor Berndsen died, 45 years – half a year after the diagnosis was known.

On Friday, January 7, the family gave a final answer to the elder in the sibling group.

Rolf Olav Berndsson, 51, died on December 20, 2021, after battling a rare neurological disease for more than a year. At his request, he was buried near his brother Lars Dore in the cemetery in Malm in the municipality of Steinker.

– It hurts a lot. Very quickly in two years, it is completely incomprehensible that the two have disappeared. Siblings will live together until old age, but we do not.

Pål-Anders Berntzen (38) is the youngest of three siblings. He buried both of his brothers within two years.

Both have ALS (amyotrophic lateral sclerosis) neurological disease, and Paul-Anders tells Doplatt that he fears he may have the disease himself.

Brothers: Last photo taken with three brothers, Pål-Anders Berntzen (left), Rolf Olav Berntzen and Lars Tore Berntzen.  Photo: Private

Brothers: Last photo taken with three brothers, Pål-Anders Berntzen (left), Rolf Olav Berntzen and Lars Tore Berntzen. Photo: Private
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About ten percent of all ALS patients have the disease, but no one knows why the Berndsen brothers suffered from neuropathy.

– My brothers were given bad cards. If you are diagnosed with ALS you can do nothing. Paul-Anders tells Docbladet that simply death knocks on the door.

It was Tronder-Avisa Who first spoke to Paul-Anders and told the story.

The brother is getting ALS

Family tragedy was about to begin in the fall of 2018. Lars Dore, a middle-aged brother who worked as an ambulance attendant, began to feel his hand tremble. In the spring of 2019, Lars Dor was diagnosed with ALS.

– When Lars Dor fell ill, I took leave from my job and went home to Lars Dor in Malm in Steinksor and worked as a brother, helper, brother-in-law and uncle – he wanted to stay home until recently. Brother.

Paul-Anders works as a florist at the bar, but when his brother is ill, it is important that he is there.

Disease: The middle brother, Lars Dor Berndsen, was diagnosed with ALS in the spring of 2019.  He had already died six months after being diagnosed with the disease.  Photo: Private

Disease: The middle brother, Lars Dor Berndsen, was diagnosed with ALS in the spring of 2019. He had already died six months after being diagnosed with the disease. Photo: Private
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It will soon be revealed that Lars Door has created an aggressive variant of the ALS. When he died in the fall of 2019, his wife, children, parents, brothers and family were all in shock.

Even after that, Paul-Anders began to think about whether to be next, but it didn’t happen.

– I was worried I would get it myself after the Lars Door deadline. I thought a lot about it. If you could test whether you should get it too, I do not know if I have tested myself, he says.

Next in the sibling group

In the summer after Lars Dore’s death, the big brother in the sibling group realized that everything did not have to be this way.

In the winter of 2020, Rolf Ola will also be diagnosed with ALS.

– When Rolf Olav fell ill, I decided to go to the Lounger to take care of my brother. He ended up spending a lot of time in a nursing home, but I helped him as much as I could, says Paul-Anders.

– There is no life to live. Rolf Olav recently lived alone in a nursing home.

Funeral: Rolf Olav was buried on January 7, 2022.  Photo: Private

Funeral: Rolf Olav was buried on January 7, 2022. Photo: Private
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The following year, Paul-Anders had to travel to Steinker every day to care for his brother. Chat, stay together and play music.

On December 20, 2021, Rolf Olav slept in his room at the nursing home.

– I wanted to take care of him like Lars Dore when Rolf Olav died. I washed him, cut his hair and trimmed his beard. That was great, says Paul-Anders.

The family said goodbye to Rolf Ola during the funeral on January 7 this year.

– Live life

When Dagbladet contacted Pål-Anders, he was preparing to sell the apartment to his older brother.

– After the funeral and death, looking back, there is a bit to sort out. The apartment is one. He says it’s part of losing someone.

Following the deaths of two older brothers, Pål-Anders became well-acquainted with psychologist talks. He is also proud of the family follow-up from the ALS team at St Olaw Hospital in Trondheim, where both brothers were admitted.

Going forward: For Paul-Anders, life is about making progress now.  Photo: Private

Going forward: For Paul-Anders, life is about making progress now. Photo: Private
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The family says it was difficult.

– This is absolutely horrible for my parents. It should not be so. It is a misnomer that children should not die in front of their parents. We have a lot of work to do in the coming years and years.

Nevertheless, it is now a matter of life for Paul-Anders and family.

– I have now returned to eastern Norway and returned to my work there. I would have progressed in life without brothers and sisters. I have no choice, he adds:

– For my part, I’m worried about getting ALS, but I’m learned to live life here and now. Life can change very quickly, as I have experienced myself in recent years.

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