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Yet there is a whole part Vivian can do. She can drive the towing, when fireåringen Isaac gets broken down in the uphill battle.

She could conjure up weird gummitryner on your phone, so they get a good laugh.

Photo: Private

She can also turn into a ninja, when it is needed. And it hands.

Photo: Private

When Isaac offers lørdagsgodt, can she gape up, chew and swallow. She can still talk, some days surprisingly well. And she can breathe. But she knows that it is only a matter of time.

there is no cure for amyotrophic lateralsklerose (ALS). The disease is a sure death sentence. Gradually lammes all the muscles in the body. After each clear voice capacity, and the ability to swallow, cough, and breathe.

Now spreads fear among ALS patients that Vivian has daily contact with, over the whole country.

Those who can survive

last week, ALS-patient Bjørn Brennskag (48) know that his hjemmerespirator is deferred, because of the korona crisis.

the Week before the notified health minister Bent on High about threatening respiratormangel in hospitals, and hard priorities of who can get pustehjelp in a akuttsituasjon.

– If one calculates that a patient would not survive a sykdomsforløp, so you will be not to use respiratorkapasitet on any one whatever consider is going to die, if a patient has a health condition that makes it with the respirator is a high probability that this will survive, said High to the VG 11.march.

Scared and furious

Such words from a health minister makes me both scared and furious, ” says Vivian. I know very well that the ALS-diagnosis is hopeless, and that we who have it will die of it.

But we can live longer if we get the help to breathe, the day we need it.

A Tonje haavik, norway had to come in smittevernutstyr when ninja Isaac (4) began to cough. He was korona-tested and declared smittefri.

Photo: Private

Korona epidemic frames the ALS-sick twice. In addition to the fear of to be of less importance, comes the risk of being infected by the virus. For the it is additional dangerous for the one who already have impaired pustefunksjon.

at the Home of Vivian gave a small host from Isaac full alarm in the previous week.

Luckily it was the test of his negative.

it is Hoped hjemmerespirator

At any time live there are around 400 people with ALS in Norway. Average life span from diagnosis is set is two-three years. 10-15 percent live longer than ten years.

Vivian has lived with the disease for four years. Just before christmas, she was hospitalized with double pneumonia. By then it was close.

WILL HAVE MULTIPLE DAYS: Vivian with husband Geir Håvard and children Roberta, Marcus, Chris, and Isaac,

Photo: Gøril Sætre

She was asked if she would like life-prolonging treatment, when she no longer can breathe even. She has said yes to. It means a respirator at home, around the clock, through a hole in the neck.

– I will be here for as long as possible, with my husband and my children. Maybe I can get the experience of Isaac, the first day of school.

But right now there is no one who can promise that life can be extended.

No new respiratorer at home

Physician and lungespesialist Ove the investment is the chairman of the National processing center for hjemmerespirator-treatment in Bergen. He understands well that Vivian and the other ALS patients are afraid.

UNDERSTAND the FEAR: ALS-diseased have reason to worry, says physician Ove the investment by the National center for hjemmerespirator-treatment.

Photo: Camilla Week/NRK

– We are not planning new hjemmerespiratorer now, ” said the investment.

It is not because of the respiratormangel. For the pustemaskinene used at home, is not the same as now required in ever larger numbers in the intensivavdelingene.

Demand planning

the Problem is recruitment and training of nurses to perform hjemmerespirator-treatment.

It requires at least nine persons in shifts, 24 hours a day. It is difficult as long as korona epidemic in progress, ” says the investment.

In addition, the procedure ALS-patients must be in hospital, to be connected to a respirator at home. They must have trakeostomi, a hole in the neck. Such operations must be exposed now, like every other planned intervention.

To emphasize that many can get good enough help at home by easier pustemaskiner with the mask.

– Shall have immediate help

Vivian is afraid of ALS-diseased cell far behind in the queue, if they need acute pustehjelp in the hospital under the korona epidemic.

This week came helsemyndighetenes advice about which patients to hospitals shall give priority for intensive care.

“the Prognosis for the life of the seriously ill” and “classification of level of functioning” are among the criteria.

–We will have limited capacity in the hospitals, but the immediate assistance are taken care of. Each patient must be evaluated individually, and not only after the diagnosis, ” says the investment.

Plans for death

at the Home of Vivian is the panic never far away from now. At the same time she will appreciate every day. She lays plans for both life and death.

Isaac (4) ensures that it will not be too much time for rumination.

Photo: Private

– The first years pushed I thought of death away. Now I think it is better to talk about it, without giving up hope on new days.

She is planning the funeral. She thinks gammeldans, but it think the man is for some. The fireworks should she in any case have.

– It should be celebrated. I will go out with a bang. But not yet, ” says Vivian.

HOPE: Vivian is aiming to follow the youngest to the first day of school

Photo: Private You can follow Vivian Brosvik further on her blog, Mama on the reels More about the national center for hjemmerespirator

Read our other issues about priorities under the korona-crisis:

ALS-ill affected by korona-tightening Korona crisis may affect organ donation Massive resistance against alderskriterium

Read our other stories about ALS and the life-prolonging treatment:

Doctors had broken the promise when the hospital wanted to turn off the respirator Height: Legane has the last word More about koronaviruset StatusRåd and infoSiste nyttSpør NRK