Quha User Stories
Most of all he misses the ability to speak
“The Disease with 1000 goodbyes”
If it would appear a fairy godmother and he had one wish, Wolfgang Tröger would wish back his language. “I do not know who can imagine the feeling of wanting to say something, and it can’t”, says the 53-year-old. He does not say it, of course, he writes it. But not so, as everyone else does quite naturally, just with his hands. Tröger has fixed a small box at the temple of his glasses. He can use it to control the cursor on the computer over the movements of his head. To trigger mouse clicks, he operated with his feet a pedal. The write procedure has something of a computer game, he notes. With practice, you reach speeds that approach almost a ten-finger typing on a keyboard.
The Disease with 1000 goodbyes
Tröger has ALS – amyotrophic lateral sclerosis. The disease, on the physics pioneer Stephen Hawking suffers. The disease, for which a number of celebrities in Ice Bucket Challenge a bucket of ice water had tipped over her head most during the summer of 2014 to raise public awareness. A disease about Wolfgang Tröger many years earlier had read a book, in the ALS was described aptly as a “disease of the 1000 Farewells”. It began quite unspectacular, suddenly in the summer of 2010. The Nuremberg had trouble turning a key with the right hand or to run the razor over his face. Given a strange tremor in the upper arms. At the end of many studies focused on the diagnosis ALS. “An incurable and progressive neuromuscular disease that quickly leads more or less to a loss of function of the entire arbitrarily controllable muscle,” Tröger keeps soberly in his book. How quickly the disease would progress with him, no one could say. Five years after this diagnosis can Tröger his arms no longer move. The legs just give him some stability when switching for example from bed to a wheelchair, he describes. He can’t hold without support lie on the neck the head, breathing works only conditionally. Especially at night and when lying, he has to rely on artificial respiration. Tröger can’t eat normally – for a year he has to feed artificially through a tube. Despite all these great limitations: talking Loss of ability and to communicate with others, charged him most. Writing or gesturing no more. A nod or shake of the head allows only simple messages. He has learned to morsen with eyes – tiring for longer “sentences”. Only the communications computer enables him to communicate and exchange. He can enter his “head mouse” texts that then “Pure”, a downloaded from the Internet voice program, reads to him.
“Pure” reads
“For single movements it works quite well, but a more complex conversation or a spontaneous storytelling would take typing for too long,” says Tröger. For such cases, computer programs provide the ability to store text modules and retrieve when needed. To tell, the electrical engineer much. As a sales and project engineering of a major German electrical company he has visited more than 40 countries and collected many impressions and experiences. So the father of two had the idea to write down his travel experiences and to read not only individual users of “Pure”. The idea for his book “Text blocks” was born. In just two months he wrote his stories from Azerbaijan, Kyrgyzstan and Turkmenistan, Turkey, Ukraine, Libya, Israel, Hong Kong and Finland on the computer. No travel guide information, but in short, juxtaposed chapters his experiences and anecdotes from more than 40 countries. For example, from his first night in Moscow when he drowsily the bathroom door confused with the hotel room door. As the door fell softly behind him, he stood: barefoot and scantily dressed in the hotel corridor, but suddenly wide awake. Hidden behind a potted plant he pondered what to do, to free him two security officials from his predicament. The much-traveled Nuremberg who has found her way even in remote corners of the globe, is this book a sort of line under part of his life. Larger travel he can’t do more, sometimes he does with his wife and two children a trip in a wheelchair – the movies, the theater or friends. His world is now a specially equipped room at home, the computer’s connection to the outside.
Arouse more awareness
“I can resignation save me, because that brings nothing anyway,” he writes at the end of his book. A book that he “my future grandchildren and all those to whom I can’t tell you about my life” dedicated. A book with which he seeks to spark a bit more awareness of the disease ALS. The way he sometimes sees and treats its environment, it is more than to create the finality of its path. Because he can no longer speak, outsiders think he’s hard of hearing or light-headed. They scream at him, treat him like a little child. “Here, the environment could contribute something that the path that I have to go, at least somewhat flat would.”
Text modules – memories from 42 countries to a life before ALS, Hardcover, Paperback or eBook to reflect on the Publisher Tredition – www.tredition.de – or in bookshops.