Über das Buch
**Thoughts on ALS** is not a medical textbook, memoir, or inspirational survival story. It is a blunt, technically minded examination of what happens when modern medicine, assistive technology, biology, economics, and human psychology collide inside one devastating disease.
Written from an engineer’s perspective, the book explores ALS not only as a neurodegenerative condition, but also as a systems problem — one shaped by energy failure, respiratory mechanics, communication barriers, institutional inertia, flawed research models, and healthcare structures that often lag decades behind available technology.
The essays range from molecular biology to practical realities of paralysis, ventilation, cough assistance, eyegaze communication, long-term survival, and the uncomfortable economic and ethical questions modern technology has forced into the open. Along the way, the book challenges many comforting narratives surrounding ALS care, quality of life, “acceptable” disability, and how society values patients who can no longer speak or move conventionally.
Despite the heavy subject matter, the tone is often dry, skeptical, and darkly humorous — more coffee-break engineering rant than polished medical lecture.
This is a book for patients, caregivers, healthcare professionals, engineers, researchers, and anyone interested in what severe disease looks like when viewed without marketing language, institutional filters, or false optimism.
Some parts may be uncomfortable.
That is intentional.
Written from an engineer’s perspective, the book explores ALS not only as a neurodegenerative condition, but also as a systems problem — one shaped by energy failure, respiratory mechanics, communication barriers, institutional inertia, flawed research models, and healthcare structures that often lag decades behind available technology.
The essays range from molecular biology to practical realities of paralysis, ventilation, cough assistance, eyegaze communication, long-term survival, and the uncomfortable economic and ethical questions modern technology has forced into the open. Along the way, the book challenges many comforting narratives surrounding ALS care, quality of life, “acceptable” disability, and how society values patients who can no longer speak or move conventionally.
Despite the heavy subject matter, the tone is often dry, skeptical, and darkly humorous — more coffee-break engineering rant than polished medical lecture.
This is a book for patients, caregivers, healthcare professionals, engineers, researchers, and anyone interested in what severe disease looks like when viewed without marketing language, institutional filters, or false optimism.
Some parts may be uncomfortable.
That is intentional.
Eigenschaften und Details
- Hauptkategorie: Bildung & Wissen
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Projektoption: 13×20 cm
Seitenanzahl: 190 -
ISBN
- Bedrucktes Hardcover: 9798240543074
- Veröffentlichungsdatum: Mai 14, 2026
- Sprache English
- Schlüsselwörter ALS
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Über den Autor
Riku Mattila
Espoo, Finland
Born in 1974. Nuclear engineer since 1999. Husband of one since 2003. Father of one since 2013. Friend of one since 2015. First ALS symptoms in 2010. Diagnosis 2012. Complete paralysis in 2014. On life support since 2015. Invasive ventilation since 2017. Life is good for me, but for most ALS patients it is not. We should increase our efforts to make me one of the last persons to die of this disease caused by the badly engineered biomass body. Check out https://lahjoitus.alstuttu.org and consider a donation.
