Brain–Computer Interfaces - Index of

186 F. Nijboer and U. Broermann
become BCI experts themselves during BCI training and provide useful insights
into the usability of different BCI systems. Thus, it only seemed logical that for
this chapter a BCI expert and a BCI user should work together to describe the
experiences with BCI applications in the field.
First, we will describe the user group that might benefit from BCI applications
and explain the difference between the locked-in syndrome and the completely
locked-in syndrome (Sect. 2). These terms are often wrongfully used by BCI
researchers and medical staff, and it is important to clarify them. Second, we review
the studies that have shown that Brain–Computer interfaces might provide a tool to
communicate or to control the environment for locked-in patients.
Third, in a unique interview, Ursula Broermann comments on multiple questions
the reader might have in his or her head after reading the description of the disease
amyotrophic lateral sclerosis (Sect. 3). She explains her daily life, what is important
in her life, and how technical tools improve her quality of life significantly. These
personal words from a BCI user are even more impressive when one considers that
she had to select every single letter by carefully manoeuvring a cursor over a virtual
keyboard by a lower lip-controlled joystick. It took her several months to write the
text provided in this chapter.
In Sect. 4, we describe a typical BCI training process with a patient on the verge
of being locked-in in a very non-scientific yet illustrative way. Through this description
we can deduce simple requirements BCI applications should meet to become
suitable for home use.
2 Locked-in the Body and Lock-Out of Society
The future user group of BCI applications consists mainly of people with neurodegenerative
diseases like amyotrophic lateral sclerosis (ALS), also known as Lou
Gehrig’s disease. ALS is a fatal motor neuron disease of unknown etiology and
cure. ALS is a neurodegenerative disorder of large motor neurons of the cerebral
cortex, brain stem, and spinal cord that results in progressive paralysis and wasting
of muscles [1]. ALS has an incidence of 2/100,000 and a prevalence of 6–8/100,000
[2]. Survival is limited by respiratory insufficiency. Most patients die within 3–5
years after onset of the disease [1], unless they choose life-sustaining treatment [3].
As the disease progresses, people get more and more paralyzed. The first symptoms
most people initially experience include weakness in arms or legs, after which
the paralysis spreads to other extremities and finally also neck and head areas. This
form of ALS is called spinal ALS. On contrary, bulbar ALS starts with symptoms
of weakness and paralysis in neck and mouth regions and then spreads to other
extremities.
The choice (written down in a living will) to accept or decline life-sustaining
treatment, such as artificial nutrition and artificial ventilation, is probably the most
difficult choice a patient has to make during his disease progress. In fact, most people
find it so difficult that they do not make a decision at all and decisions are made