Brain–Computer Interfaces - Index of

Brain–Computer Interfaces for Communication and Control in Locked-in Patients 193
and a good deal of friends have a technical comprehension which considerably
excels mine. When I look back I am surprised at how much commitment it takes
for every little success and how sometimes that commitment is without success. It
helps incredibly to be able to jointly walk difficult roads. I cannot express how grateful
I am for that, also when the ALS drives us again and again at our limits, and,
sometimes also over it.
My husband supports my - at any one time - remaining functions with everything
that can be done technically. In this way he was able to allow me control over my
laptop and the operation of my wheelchair until this moment. I am very happy about
that, but even happier for the love he lets me perceive every day!
2. Mobility
Handicapped accessible public transport is a really good thing, especially for people
like me, who otherwise have to rely on special disability transportation services.
The transport schedules of these transportation services do not allow spontaneous
trips. Usually you have to book many days if not weeks in advance and there is
always a real possibility that they cancel your travel plans. With the public transportation
you are also considering the environment and, not unimportant, your
wallet.
Not being able to head somewhere spontaneously with my own car, but having to
wait due time after advance reservation to let someone drive you, takes a bit of
getting used to. However, I don’t want to be ungrateful. At least I still get around.
3. Acceptance
The personal environment has an unimaginable influence on the psyche (and with
that also directly and indirectly on the physique) of people. In individuals who are
physically dependent on others’ assistance, these effects are roughly proportional to
the degree of their dependence. In this environment, a strong social pressure finally
aimed at the death of the corresponding person can develop within a very short
time. Notably, when the social environment is characterized by a positive attitude,
and when the patient can feel this attitude, suicidal thoughts and the wish for a
physician-assistant suicide are very rarely expressed.
Unfortunately, the public opinion about the physically dependent does not improve,
and even politicians dispense negative attitude toward such individuals. Thus, the
environment of severely ill people could already be seen as problematic.
I have a negative approach against the theme ‘living will’, because of the way it
is currently formulated. I think it’s inhumane and inadequate to die of hunger and
thirst in our alleged civil and social society. In addition, living wills are often written
in times of good physical health. For some people the opinion might change once
they are really affected by the disease.
This is also true for the right to live of unborn alleged or actual physically or mentally
disabled children. Nowadays one has to excuse and justify oneself for having
a disabled child. Friends of mine (both physicians) were expecting a baby with
the Down syndrome (trisomy 21). In the delivery room they were told by a doctor
who ‘meant well’: “Something like that this is not necessary anymore these
days!”
However, when you ask adults who were impaired from birth about this theme, you
will almost always get an answer like: ‘Fortunately, they didn’t have the extensive