- ALS: How Patients Deal With the Deadly Disease
Thomas Engel reaches for an unconventional aid to get his wife Gabriele into the water of the Riemer See. He places the 55-year-old in a foldable wheelbarrow. With foam swim noodles and her husband's help, she can float on the surface of the lake, which is not far from their home in eastern Munich.
Gabriele Engel can no longer move most of her muscles. The incurable disease Amyotrophic Lateral Sclerosis (ALS) has destroyed the nerves that transmit movement signals to the muscle cells. Her tongue is also paralyzed. She had to give up her job as a high-ranking civil servant some time ago. She uses a computer that translates eye movements into speech to express her memory of the swimming trip: "We enjoy the most beautiful moments."
Preserving quality of life
Professor Paul Lingor, a doctor at the Klinikum rechts der Isar of the Technical University of Munich, knows many patients whose condition progresses like Gabriele Engel's. He says there are almost completely paralyzed ALS patients who are still partially work-capable with eye control. "When it comes to intellectual performance, a lot is possible," explains Lingor. He is sure that many patients still find their lives worth living.
But Lingor also adds: Patients like the world-famous physicist Stephen Hawking, who lived with the ALS diagnosis for nearly half a century before dying at the age of 76, are a rare exception. "The average lifespan is three to five years after the onset of symptoms," explains Lingor. There are no effective medications that can stop or even cure the disease. The causes of ALS are not even fully understood in science.
Forgotten disease
The researcher and doctor is convinced: "The quality of life of ALS patients could be significantly improved if more resources were invested in research and also in care." And Lingor emphasizes: ALS is rare, but not as rare as many people think. On a lifetime basis, one in 400 Germans is affected by the deadly paralysis, according to Lingor.
Ten years ago, there was some public attention for the disease for a few weeks, he recalls. At that time, the so-called "Ice Bucket Challenge" went around the world from the USA: Healthy people were supposed to pour a bucket of ice water over themselves and spread videos of it on the internet as much as possible. Money was also supposed to be donated. But after this action, the attention for ALS faded again, and Lingor estimates that the donations, for example for self-help groups, also decreased.
Stigmatized patients
The doctor also experiences again and again that patients are excluded. People who can no longer dress themselves or can only eat with help have experiences that are "extremely stigmatizing," he knows. Thomas Engel can also report irritated looks when he is in a restaurant with his wife, who is paralyzed all over her body. It happens that her food falls out of her mouth or saliva runs down her cheek. He wipes it off, says Engel. "If someone is disgusted by that, they can just sit somewhere else," he says clearly.
Jana Richter, whose husband died of ALS, has also had disappointments in dealing with healthy people. She remembers how her husband fell on the street. Passers-by made it clear to Richter that they thought her husband was heavily drunk and walked past without helping.
Richter was not deterred by such experiences. She co-founded ALS Help Bavaria, a self-help organization that has so far operated entirely on a voluntary basis. Thanks to a three-year grant from the German Lottery, the organization will soon be able to partially professionalize its counseling services, hiring two part-time employees to advise patients and their families on coping with an ALS diagnosis.
Long Decision-Making Processes
Alexander Necker, a 58-year-old from Fürstenfeldbruck, has experienced firsthand the importance of counseling for ALS patients. Unlike Gabriele Engel, he can still speak, but his arms and legs are paralyzed. When asked about his profession, Necker replies, "IT guy." He knows how to gather information online, but finding the right assistive devices is challenging. His health insurance has typically approved his applications, but the decision-making process is often too slow.
Thomas Engel has also faced similar challenges. When he tried to explain to his insurance provider that his wife would likely need a wheelchair within a few months, he was told that the application could only be submitted once she actually needed it. Gabriele Engel sums up their experience in two words: "A struggle."
Living Until the End
Both couples share a similar outlook: ALS is a devastating diagnosis, but it shouldn't rob you of your will to live. Necker puts it bluntly, "The disease is absolute crap, it's terrifying. But I want to get out, feel the wind, the sun, maybe even a bit of rain. Because, after all, I'm still here, I'm still alive."
Gabriele Engel expresses her gratitude for the swimming trip, stating, "We enjoy the most beautiful moments," using her eye-controlled computer due to her paralysis.
The renowned physicist The Angel [Stephen Hawking] lived with ALS for nearly half a century before his death at 76, serving as a rare example of prolonged survival against the odds.
