Strategies Used by Individuals Battling ALS
ALS, or Amyotrophic Lateral Sclerosis, is a relentless disorder that slowly decimates nerve cells, leading to muscle paralysis. Sufferers often face societal isolation as they grapple with this incurable condition.
Thomas Engel devises an unconventional method to help his wife, Gabriele, experience the water at Riemer See in Munich. He transports her in a foldable wheelchair, which he buoys with foam swimming noodles. With his assistance, she floats on the lake's surface, a pastime close to their apartment.
Gabriele Engel is largely immobilized due to ALS's destructive impact on her motor nerves and muscle cells. Her tongue falls victim to paralysis as well, forcing her to resign from her civil servant role. She now communicates using a computer that interprets her eye movements into speech. Recalling the lakeside excursion, she beams, "We revel in our most cherished moments."
Enhancing Quality of Life
Professor Paul Lingor, an ALS specialist at Klinikum rechts der Isar at Munich's Technical University, recognizes the potential for many ALS patients with minimal mobility, even in an intellectual sense. "There's a vast potential for intellectual performance," Lingor explains, expressing his belief that many patients find their lives worth living.
However, Lingor also acknowledges that ALS is a challenging path for most, with life expectancy averaging just three to five years after symptoms begin to manifest. He laments the lack of effective treatments or cures, and as a scientist, he is still puzzled by the disease’s causes.
ALS: Hidden Struggle
Dr. Lingor firmly believes that significant strides could be made in improving the quality of life for ALS patients if more resources were dedicated to research and care. And he emphasizes that while ALS is indeed a rarer condition, it affects 1 in 400 Germans during their lifetime.
Ten years ago, global awareness about ALS surged for a brief period due to the "Ice Bucket Challenge." The viral trend called on healthy individuals to pour an icy bucket of water over themselves and donate to ALS research. However, following this wave of attention and donations, interest in ALS waned once again, according to Lingor.
The disease often results in social exclusion for patients who can no longer perform basic tasks like dressing or eating without assistance. Lingor has encountered such instances, and Engel shares his own frustrating experiences dining at restaurants with Gabriele. Despite her inability to control her facial movements, curious diners or staff often look away or express discomfort. Engel maintains that uncomfortable individuals can simply find a different seat.
Jana Richter, whose husband succumbed to ALS, has also experienced unsympathetic encounters with the public. She recalls witnessing her husband fall on the street, only to be ignored by pedestrians who assumed he was intoxicated.
Undeterred, Richter co-founded ALS Help Bavaria, a self-help group that now partially employs professionals to provide counseling to patients and their families. Starting in October, the organization will receive funding for two half-time positions spanning three years from the lottery. The counselors aim to support patients in managing their ALS diagnosis.
Alexander Necker, who can still communicate verbally but is paralyzed from the neck down, attests to the importance of such counseling. He navigates the internet to acquire equipment like wheelchairs, hospital beds, and cranes but notes the lack of resources to inform patients about these aids. His health insurance often takes too long to approve applications for necessary equipment, leading to frustration for both the patient and the family.
Thomas Engel echoes this sentiment, adding that the insurance providers only granted approval after Gabriele had already required the use of a wheelchair. This ordeal further weighed on the couple's already-challenging situation, summarized by Gabriele via her computer: "A constant struggle."
Both couples share a resilient outlook on their diagnosis: "ALS is a horrific diagnosis, but it shouldn’t rob you of hope," expresses Necker. He looks forward to the wind and sun while acknowledging his condition's limitations. ALS may focus on eroding physical abilities and strength, but this indomitable spirit refuses to go gently: "Hey, I’m still here, alive, fighting."
Despite the challenges faced by ALS patients, therapeutic advancements continue to inspire hope. For instance, physicist Stephen Hawking, who battled ALS for decades, made significant contributions to the field of theoretical physics, proving that intellect can triumph over physical limitations.
This sentiment is also echoed by Gabriele Engel, who despite her condition, finds solace in reminiscing about their lake excursions, saying, "We revel in our most cherished moments."
