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Jana Richter from ALS Selbsthilfe Bayern looks after Alexander Necker from Bruck.”/>Jana Richter from ALS Selbsthilfe Bayern looks after Alexander Necker from Bruck. © Ingrid Zeilinger
It started seemingly harmlessly, with tendonitis in his hand. But despite treatment, Alexander Necker’s condition did not improve – on the contrary. Now he is trapped in his body. Because of a treacherous illness.
Alexander Necker could no longer make a fist because then things would fall out of his hands. “At some point you can no longer comb your hair because you can no longer lift your arms,” says the now 58-year-old. Alexander Necker suffers from amyotrophic lateral sclerosis, or ALS for short – a disease of the nervous system. Around 10,000 people in Germany receive this diagnosis every year. Only the motor nervous system is affected.
Four years until diagnosis
It’s a gradual process, says Necker. “The bad thing is that a little more is missing every day.” First the arms stop working, then the legs stop working, he says. At the beginning, no one takes the stumbling seriously. But at some point he couldn’t stand anymore, couldn’t shake hands with anyone, couldn’t even shoo a fly away from his face.
Brucker first noticed the symptoms in 2015, and the diagnosis was only made four years later. The IT trainer felt left alone. There was nothing to help, no psychological support. It also took too long for the health insurance company to approve aids. His mother, who was sick, cared for him in the house in Bruck – a tough job.
Alexander Necker found support from ALS Selbsthilfe Bayern. A doctor turned to the then chairwoman, Jana Richter. She got in touch and recognized Necker’s need. “People who suffer from ALS are confronted with a variety of symptoms,” says Richter: progressive paralysis, increasing loss of ability to speak, difficulty swallowing, and difficulty breathing are some of them.
Fought for intensive care
Because of the paralysis, a visit to an ALS outpatient clinic becomes time-consuming and tiring – people give up at some point, says Richter. This shows how important it is that patients are visited at home and that the consultant gets an impression of the situation at home. Richter organized a ventilator for Alexander Necker and fought for intensive care from the health insurance company. Now there is a carer in the house around the clock who looks after Necker, changes his bed regularly and also helps when he has to leave the house.
Richter knows how Necker and his family feel. She cared for her husband with ALS for five years until his death. “Back then, I reached my physical and mental limits and often felt left alone with the illness.” She founded ALS Selbsthilfe Bayern with seven relatives in September 2019 and was chairwoman for five years. The German Television Lottery Foundation is supporting ALS Hilfe Bayern for three years from October by covering the costs of a social advice center.
The work of the helpers
“We are very pleased about this great opportunity to be able to provide even better support to patients and their families in dealing with ALS in the future,” says Richter.
The association currently looks after over 150 ALS patients in Bavaria. The counselors make home visits, maintain contact via telephone and internet and offer patient-oriented social advice and support. The patient often doesn’t know what he needs and what will really help, says Alexander Necker. “That’s why the ALS association is so important.” Jana Richter also helps him apply for the right wheelchair. One with which he can go out more and participate in public life. “Seeing people, feeling the rain and sun on your skin, drinking a coffee,” he lists. Recently he was at the Pucher Meer with his keeper – a very rare experience. “It was such a nice trip.”
Giving up is not an option
In the 58-year-old, the disease progresses more slowly. Giving up is not an option for him. “Either you surrender, or you say, I’ll get the last drop,” he says and smiles. He chose the latter. “I try to enjoy as much as I can and to be out and about a lot.” And it is precisely this participation that is important, says Richter. In contrast to multiple sclerosis, the sensory system is not affected. Taste buds, feelings and also the brain function. “I don’t feel disabled, I just can’t move,” says Alexander Necker.
Like everyone affected, he misses being touched. “I can’t shake hands with anyone.” At least he can speak and communicate. At some point it only works through eye contact and a speech computer, even if these muscles fail. The breakdown is associated with pain and exhaustion. “You drank your breakfast coffee and felt like you had dug up the whole garden,” is how Necker describes the state of exhaustion.
In addition to advice, exchange is important to the ALS association. Therefore, family and patient meetings are organized regularly.
