Two tell AS patients, we live with the incurable disease

In Germany, 8000 people are living with the nervous disease THAN that of the late astrophysicist Hawking suffered. FOCUS Online spoke with two of them. Your symptoms are quite different. They have in common is that they let the disease get you down.

Oliver Moßmann and Oliver Jünke not only have the same first name. They also share a fate that one may rightly call cruel. You suffer from amyotrophic lateral sclerosis, better known in abbreviation AS. The most prominent person in question was sure, Stephen Hawking, has survived the incurable disease much longer than most sufferers.

Oliver Jünke says therefore: “The normal life expectancy is only three to five years. But Hawking managed to 56 years. That gave us Concerned, hope, and a hope.“ Of course, Hawking was but privileged. “I was invited, for example, still no one to a parabolic flight.”

AS a Patient with 24/7 care

Also Jünke, the head of the self-help Association “AS-mobile”, has wrested from the disease that destroyed increasingly nerves and paralyze muscles, already more than 13 years. Today, he is instructed, however, round-the-clock care. He communicates through a Computer he or she moved with the eyes. An assistant from the tap and then his formulations, as well as the answers in the FOCUS-Online-interview. The 49-Year-old is also reliant on a ventilator and is fed through a stomach tube.

Oliver Moßmann of 2016 with the AS diagnosis, see Stephen Hawking is in a different League than himself: “I think it’s good that his Name was always in connection with AS mentioned. But he was an atypical Patient – not only with regard to the course. He had to make sure to never have to Worry about the financing of his Intensive care.“ Moßmann private AS a Patient of Oliver Moßmann with partner

Fight with the cashier to a wheelchair

He has since made other experiences. The now 49-year-old his health insurance approved the much-needed wheelchair, as a contribution to the WDR focused on the rejection. The insurance did not want to talk to that Moßmanns Tariff covering a wheelchair.

Oliver Jünke, also 49 years old, has made the fight for als patients against the arbitrariness, indifference, or obstinacy of the authorities, institutions and health policies to his life’s task. He carries him in his self-help Association, despite severe physical impairment, but with bright lively spirit, each and every day. The commitment for the WHEN-Sick helps to master the personal destiny.

Against the incurable amyotrophic lateral sclerosis (als) are so far no therapy to slow down the symptoms of the nerve disorder or even could stop. Because the disease is relatively rare, the time-consuming and cost-intensive research slow. Therefore, various scientific organisations and self-help groups call to donate. Here you can make a contribution to the study of AS:

The ALS clinic at the Charité hospital in Berlin used to raise funds for the research and interdisciplinary care of currently 800 patients. Information about the use and the account information, you can find here:

In the same Fund donations to the Initiative “aid for the sick people”:

The “Initiative therapy research”, originated from the circle of friends of als patients, want to research and support projects, and the deadly nerve disease to more social attention, help. The page also Links to other initiatives and self-help groups, the call to donate.

At the beginning of a weakness in the leg

In both Oliver’s complaints began with muscle weakness in one leg. And in both were physician, orthopedic surgeons, and even neurologists about the cause, or were incorrect diagnoses. In Jünke it lasted for a year, until finally, Doctors at the Charité hospital AS a diagnosed. Moßmann Doctors Odyssey ended only after two years of in-clinic Bochum.

And both had to be first clear about what kind of a disease. Oliver Moßmann, had always driven a lot of Sport, says: “I have after the first diagnosis for the first time AS googled. Wikipedia has made it clear to me then, quickly. Of course, I was shocked.“ And Oliver Jünke says: “I don’t want to have the only true. But after a week I started to collect all information, I could have organized my life in a new way.“

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Only two drugs against AS – of is not yet approved

Both patients have the luck to be from the beginning in an ambulance-treated (Jünke 2005 at the Charité in Berlin, Moßman in may 2016 in Bochum, Germany). “It is against there for 20, only one drug specifically. Riluzole is designed to protect the core of the nerve cells,“ says Oliver Moßmann. “I’ll take that too. But I was also apparently the first Patient in the summer of 2017, a new promising agent from Japan: Eradavone.“

Is not approved the new drug in Germany. But the originally for stroke patients developed active ingredient helps Moßmann – and now also in other German als patients. “The hoped-for stop the nerve death is, unfortunately, not occurred, but it slows down the deterioration.” For two weeks he gets from Monday to Friday, an Infusion, then two weeks break. “I think it helps. And I feel no side effects.“

Every day a little less muscle power

Nevertheless, Moßmann no longer have to tighten the watch as his muscle strength begins to fade: “From one day to the other, you can your socks alone. Or: a few weeks Ago, I was able to hold a coffee Cup with one Hand, now I need both hands. This is hard, more and more skills to wane.“

Oliver Jünke, the disease is already much more advanced, lists in addition to Riluzole, a medication for spasms, difficulty swallowing, and the muscles of the following therapies: “Four times a week, the physical therapist for range of motion exercises, respiratory therapy, lymphatic drainage and Massage. Also, I’m moved daily by my nurses before getting Up. This includes Training with a speech therapist, facial Expressions, Jaw movements and swallowing training.“ Jünke don’t want to, that sounds like an ordeal: “I can sit on a normal toilet, me in the shower chair, showers, and feel comfortable in my own skin.”

Care team replaces hands, feet and voice

Jünkes environment is entirely focused on his specific needs – from a nursing bed to a Special wheelchair, he has a number of tools. A solid Team of eight Full – and part-time staff take care of around-the-clock to the severely disabled persons. “You are my hands, feet and voice.”

All Oliver Jünke a piece of quality of life. He therefore advises all Concerned: “The health insurance funds for a permit or reject a resource. Here it should be inserted in each case a contradiction and, if necessary, the assistance of the social court.“

Anyone who believes that the dedicated AS-expert is unable to leave his apartment, is wrong. After the Interview with FOCUS Online, he passed for two days for a care Congress. Using its eye-controlled computer and a personal assistant, he holds a speech there.

Family support comes to boundaries

Moßmann to cope without professional assistance and care forces. Family, friends and his girlfriend, who works only part time, help. “I am now, but at the border, to do everyday things for themselves and need me to organize a professional helper,” he says. Physical and occupational therapy takes he also. “And then I pay attention on vitamin-rich diet, take Extra vitamins for the nervous system. I just want to do everything I can.“

Oliver Moßmann referred to himself as a fighter. Especially for his six-year-old son he wants to be as long as possible, strong and optimistic. But he also says very clearly: “I do not see myself as a AS a patient needs to be ventilated, and only through a language a Computer can communicate.” How far he goes with the disease, he wants to decide on every case. “My biggest concern is that I can’t decide one day on me, and the last autonomy to lose.”

As much as possible of the autonomy that is the greatest goal

Oliver Jünke has lost his physical independence for years. Nevertheless, he says: “Me my self-determined life is very important.” His nurses he sees as a helper to enable him the participation in the life. And adds: “If I my communication not with the eyes can support, I’ll have to decide for a therapy abortion. Without communication the life is not for me to live.“

Even if they are different, say length and may vary in severity ill – both Concerned that you have come to terms with your disease. Oliver Moßmann to: “in The beginning I struggled and Why I asked’?’. But there is no answer, and it’s just done.“ And Oliver Jünke says: “I have adopted and accepted. Only in this way life goes on and life is beautiful!“