Brain–Computer Interfaces - Index of

192 F. Nijboer and U. Broermann
artificially respired only during the nights 2 . Since 2004 I have tracheal respiration
and artificial nutrition - otherwise there weren’t big changes to my life.
Since my car accident in 1985, I have been sitting in a wheelchair. It happened
two years after my wedding with my very beloved and best man in the world, and
right in the middle of both our graduation. Leg amputation and paralysis of bladder
and colon, as well as brachial plexus injury to my right hand side made me very
dependent on other people’s help.
I was often asked when I first realized the specific symptoms of ALS. Because of my
earlier accident, I can’t exactly tell. Both, my mother and her brother (and probably
their mother, that means my grandma), were diagnosed with ALS before they died.
At the end of the year 2003 it was quite evident that I had problems in moving
and breathing. After intensive neurological examinations in the hospital, I got the
diagnosis: ALS, a very rare inheritable form. Although there is no clear evidence
that the criteria according to El Escorial 3 were confirmed, neither at present time
nor in the past. There is always a big difference between the theory and the practical
life. Well, who knows, whether it ´s for the good.
Only because of our graduation my husband and me, at that time abstained from
having babies. During the time I had to stay in the hospital, my uncle died of ALS
(1985). The turn of events (the consequences of my accident and my chance of 50%
to come down with ALS) we decided with a heavy heart to do without bearing children
everlasting. After all children do not end in themselves – far be it from me to
deny it, that again and again I quarrel with our decision about children.
My day usually starts with the night shift- or morning shift: inhalation, measuring
blood sugar level, injecting insulin, temperature, blood pressure, and oxygen and
CO2 level measurement and so on. Then: laxating 4 , washing, getting dressed. Then
I am carried from the bed to the wheelchair with the help of a lift attached to the
ceiling. I am in the wheelchair until the evening; most of the time, I am working.
My wheelchair is a real high-tech device. It is equipped with lots of adjustment
possibilities for the seat and some functioning environmental control options. It is
always exciting to see if one of those functions stops working. I dare you to say a
wheelchair doesn’t have a soul... ....
The following things represent quality of life for me:
1. Love, Family and Friends
I am privileged with my husband, my caring family and a lot of really reliable
friends at my side, who still have the force, when I do not have any left. My husband
2 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.
3 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.
4 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].