The pain caused by the disease amyotrophic lateral sclerosis (ALS) is often described as little lightning bolts racing through the body. In 2014, the serious illness from which Stephen Hawking also suffered was omnipresent on social media. As part of the Ice Bucket Challenge, countless participants poured ice water over their heads to empathize with the pain of those affected and to arouse the willingness to donate. But while the pain can be simulated by the challenge, it is difficult for outsiders to understand how the disease affects the everyday life of an ALS patient and their environment.
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It is estimated that 8,000 people in Germany have ALS. You suffer from a nervous disease that causes the irreversible death of the motor nerve cells (motor neurons). Nerve cells needed for movement, speech, swallowing and breathing. Many forms of ALS begin with gradual paralysis in the arms and legs. As the disease progresses, the paralysis increases, so that the patient becomes completely immobilized while being fully conscious. Although the disease has been known for over 100 years, it is still a death sentence today, with most patients living an average of three years after the onset of the disease. The therapies are almost exclusively symptomatic, since the currently only approved ALS drug, riluzole, only has a delaying effect of about three months.
Life changes abruptly with the diagnosis
The diagnosis of ALS, which can usually only be made at a late stage, changes everything in a person’s life. Suddenly you become dependent on other people, because on the one hand everyday life is planned by the illness and from now on consists of dozens of medications daily, physiotherapy and ergotherapy hours as well as speech therapy and regular visits to the doctor, at the same time meeting the obligations becomes a challenge right from the start , as driving ability deteriorates due to decreased feeling in legs. Insidiously, on the other hand, the loss of function of the nerves becomes noticeable, so after a while it is neither possible to open a bottle nor to turn over in your sleep and even the shortest walk becomes more and more of a challenge, because the route must first be checked in terms of the soil conditions, Inclination and elevators are planned.
mountain of bureaucracy
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Not only is the diagnosis itself devastating with ALS, but also the importance of the disease in our healthcare system, so sufferers are faced with a mountain of bureaucracy.
Although the course of the disease is known, it can take months before levels of care are adjusted to meet needs or required aids are approved. The subsidy for the necessary conversion of the apartment is not sufficient for an illness that causes such severe disabilities, so that the sufferer faces high costs. In addition, the neurological clinics are poorly networked with each other, so that the patients themselves have to actively search for a clinic and study that suits them individually. The same applies to finding a suitable physiotherapist, because very few have had experience with diseases of the motor neurons.
Since the current state of medical research gives no hope, what ALS patients want above all is quality of life and time with family and friends. And who knows, maybe the Ice Bucket Challenge can be revived and another $200 million in donations raised so that ALS can be cured in the future. red