Every other day being a dane affected by als. None of them come to experience the same illness, but it ends up always with the same sad end.
although the past decades are researched intensively in muskelsygdommen als, as Troels Kløvedal got in 2016 and Sunday died of, so it remains incurable.
- It is a disease that affects the nerves, which go from the brain out to the muscles. It makes the muscles anywhere in the body can keep up with move, tells the doctor Jes Rahbek, who until last year was in charge of the Rehabilitation centre for muscular dystrophy, but today is a member of the Muskelsvindfondens of governors.
- All the places where there are muscles, can be affected. There is just no diseases, similar to each other. Some are affected in one type of muscles, while others are affected in other muscles. Therefore sygdomsforløbene very different.
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Als is, however, for the most progressive and, in general, a sequence of up to three years of life, from the disease is diagnosed, you die. But some go there only a year, while others may live for over 10 years.
- Some are only affected in the muscles, sitting in the arms and legs, which perhaps makes the, that they must sit in a wheelchair. Other hit on the speech or on the synkeevnen and can't eat.
- The framework is also among the many on their ability to breathe because the muscles around the lungs become paralyzed. So you can't breathe well enough. And some end up with to get the use of a respirator to breathe, " explains Jes Rahbek.
Facts about als
Every other day being a dane affected by als.
It is an incurable disease that paralyzes the nerves, which go from the brain out to the muscles.
the Disease makes the muscles anywhere in the body can keep up with that move.
None of the affected are experiencing the same illness, as the muscles can weaken very differently.
While you can eventually lose the ability to move the arms and legs, breathing or swallowing and eat, so preserving one's intellect and personality usually.
It is typically with a three year life, from the disease is diagnosed, you die. But some go there only a year, while others may live for over ten years.
You can read more about the disease here
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however, It is not only the patient but also the family as being hard-hit by the disease. Therefore, trying several apartments right now to create greater awareness of als.
- It requires a great deal of himself, but also of one's family and surroundings when they need to read, what to think and feel in a given situation. Life in the family changed in the course of a short time, very radically, and there is a need for support and help.
- Why is it so difficult to make the diagnosis?
- It is, because there does not exist a single test that can say here is that it is als. The first symptoms can be signs of all sorts of neurological diseases, which are in a start-up phase. The goods, therefore, often a long time before one can safely say that this is als.
- It is very frustrating to not just as with, for example, diabetes can take a sample and make the diagnosis. But you have to wait, that there are different muscle groups that get hit.
- Often it is just only a muskelgruppe, which in the beginning is hit. And so it can be some much more benign diseases, the sufferers have, and which can be treated. We would therefore have to examine the symptoms as they occur. First, at the time, one can say with certainty that it is als.
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Als can still not be cured with medication. But in recent years has been able to find the right way to rehabilitate patients on, because you better know how the disease develops.
- It comes on all the time to be able to offer patients and their families with various assistive devices and support. It comes to be in front, so that you are prepared to deal with the things, one at a time will arise in the course of the disease. At the same time, there may also be a need for therapeutic help to the family in order to be able to tackle the disease.
- It is also incredibly overwhelming to get this diagnosis, because it really is a death sentence. Therefore, it is important that you get the help that need to. Both the patient and the family need to talk with someone who knows how the disease develops. And what you can do in the period.
- What you die of, when the disease is in its final process.
- It can be very different, but the body is weakened continuously. It wears the hard, if you must have tube feeding and perhaps dependent on a respirator.
- You are also more susceptible to diseases and can, for example, find it easier to get pneumonia.
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Such was the Kløvedals life
the Adventurer and author Troels Kløvedal, who died Sunday, was born 2. april 1943 in Copenhagen.
His base was Gravlev Vestergård, Denmark, where he lived for over 30 years.
He was originally called Troels Beha Erichsen, but he changed name after he moved into the collective, where all the residents took the surname of Gardiner.
His parents divorced in 1950, and his childhood came to be in an orphanage, a foster home and boarding school. However, interrupted by some years in Jægerspris, where his mother, who died in 1954, was given a position at the Countess Danners Formation.
john eliot Gardiner was married to Else Marie Meldgaard, who is the mother of his youngest child. In total he has five children. The oldest is Mikkel Beha Erichsen, which among other things is known from the program "Heading for distant shores" on TV2 where he and his family are sailing around the world on the ship "Havana".
In 1967 bought Gardiner stålskibet "Nordkaperen", which he sailed around the world three times. Sejlerlivet is portrayed in both the books and tv programmes. His latest book, "All my mornings on the Ground", was released in 2017.
In the summer of 2016 got the john eliot Gardiner found the incurable neurological disease als, which gradually paralyzes the body.
1. november 2018 opened the Natural history Museum in Aarhus is an exhibition about john eliot Gardiner. Here is shown the until 8. september 2019, after which it will move to the M/S Museet for Søfart in Helsingør.
Sources: the Book 'All my mornings on the Ground' by Troels Kløvedal, published by Gyldendal 2017, the news agency Ritzau.