Abstract
Most Brain–Computer Interface (BCI) research aims at helping people who are severely paralyzed to regain control over their environment and to communicate with their social environment. There has been a tremendous increase in BCI research the last years, which might lead to the belief that we are close to a commercially available BCI applications to patients. However, studies with users from the future target group (those who are indeed paralyzed) are still outnumbered by studies on technical aspects of BCI applications and studies with healthy young participants. This might explain why the number of patients who use a BCI in daily life, without experts from a BCI group being present, can be counted on one hand.
If you really want to help somebody, first you must find out where he is. This is the secret of caring. If you cannot do that, it is only an illusion if you think you can help another human being. Helping somebody implies you understanding more than he does, but first of all you must understand what he understands. 1
1Sören Kierkegaard: The point of view from my work as an author, 39.
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- 1.
Most ALS patients at some point will use a non-invasive respiration mask, which can be placed over the mouth and nose. Most patients use this during the night to avoid fatigue in daytime.
- 2.
The El Escorial consists of a set of medical criteria used by physicians that classify patients with amyotrophic lateral sclerosis into categories reflecting different levels of diagnostic certainty. Common diagnosis are “probable ALS” (as in the case of Dr. Broermann), whereas hardly any patient receives the diagnose “definite ALS”. Diagnosing ALS can take a long time (years!). This uncertainty is not only difficult for the patient and his/her caregivers but also for the physician.
- 3.
Patients with ALS are often constipated. Caregivers often need to help initiate defecation. Sphincter control is often one of the last muscles over which ALS patients lose voluntary control and might even be used for signalling yes/no [51].
- 4.
With a tracheotomy air no longer runs through the larynx. An add-on speech cannula that uses incoming air instead of outgoing air can enable a person to continue to produce speech. In this case, Mrs. Broermann says her “phonetic” is a mystery to her fellow men, because it’s difficult to understand her whispery and raspy voice.
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Acknowledgements
BCI research for and with BCI users is not possible without the joint effort of many dedicated people. People who added to the content of this chapter are: mr. JK, mrs. LK, mrs. KR, mr. WW, mr. RS, mr. HM, professor Andrea Kübler, professor Niels Birbaumer, professor Boris Kotchoubey, Jürgen Mellinger, Tamara Matuz, Sebastian Halder, Ursula Mochty, Boris Kleber, Sonja Kleih, Carolin Ruf, Jeroen Lakerveld, Adrian Furdea, Nicola Neumann, Slavica von Hartlieb, Barbara Wilhelm, Dorothée Lulé, Thilo Hinterberger, Miguel Jordan, Seung Soo Lee, Tilman Gaber, Janna Münzinger, Eva Maria Hammer, Sonja Häcker, Emily Mugler. Also thanks for useful comments on this chapter to Brendan Allison, Stefan Carmien and Ulrich Hoffmann. A special thanks to mr. GR, mr. HC, mr. HPS and Dr. Hannelore Pawelzik.
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Dedication On the 9th of June 2008, 2 months after completion of the first draft of this chapter, Dr. Ursula Broermann passed away. And in her memory her husband and I decided to dedicate this chapter to her with words from “the little prince”, the book from Saint-Exupéry, that she loved so much [60]: “It is only with the heart that one can see rightly; what is essential is invisible to the eye.”
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Nijboer, F., Broermann, U. (2009). Brain–Computer Interfaces for Communication and Control in Locked-in Patients. In: Graimann, B., Pfurtscheller, G., Allison, B. (eds) Brain-Computer Interfaces. The Frontiers Collection. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-02091-9_11
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