Quality of Life with a
Ventilator
Arne Lykke Larsen*
arne.lykke.larsen@mail.tele.dk
*Version 1.2 (with gastrostomy tube and ventilator)
Introduction
So, it is nice to be back in Iceland. This is my third visit to Iceland, and my second visit
to Iceland using a ventilator, but it is my first visit to bankrupt Iceland. I would like to
thank my friend Gudjon Sigurdsson for inviting me to Iceland.
Let me start with a few definitions. I use the word, Pals, for a person with ALS. I use the
word, ventilator, for this machine that can ventilate you. Some people call it a respirator.
Finally, I call the helpers around me, for personal assistants. I think the english/american
word, is caregiver. But then I must be the caretaker, which means something completely
different. So I will use the word personal assistants.
Well, I am going to talk about, quality of life with a ventilator. And this talk will only
last for 5 minutes, since I have the ultimate description of quality of life with a
ventilator, and the ultimate reason why everybody with ALS should get a ventilator.
You can go to Disneyland! Last spring, I went to Paris with a friend, who is in exactly
the same physical conditions, as I am. One day, we went to Disneyland, and another day,
we went up in the Eiffeltower. This shows that anything is possible, if you have ALS
and a ventilator, and if you live in Denmark. Show the pictures. The first photo shows us
outside of Disneyland. And the second photo shows us up in the Eiffeltower.
No, to be completely honest, this talk will last for more than 5 minutes. I was diagnosed
with ALS 8 years ago at the age of 35. So I am now 39 years old! Unfortunately, I have
to say that my ALS has developed quite a lot. Today, my whole body is essentially
paralysed. Moreover, I can neither eat nor drink. I cannot speak and I cannot breathe. I
live alone in a small apartment. But I am never alone, of course, I cannot be. 24 hours a
day, I have one of my ten personal assistants around me. Despite my serious handicap, I
still hold my position as a theoretical physicist. at the University of Southern Denmark. I
have no family members to care for me. They care about me, of course, but they dont
care for me. Still, I live a very active life. I go to work every day, I visit family and
friends, I often go to cultural events or sports games, each year I go on vacation in a
foreign country and I go to international conferences, also each year. Since I got a
ventilator 3 years ago, I have visited 9 foreign countries: Iceland, Sweden, Norway,
Germany, Poland, Belgium, France, The Netherlands and of course Disneyland. So I
would say that I live a pretty normal life!
The outline of my talk is as follows:
1. The Danish System.
2. The Ventilator.
3. Communication.
I was already in a wheelchair, when I got the diagnosis 8 years ago. The physician told
me that my illness would develop very fast in the beginning. but later it would slow
down. He did not tell me that it was a fatal illness. That I learned from the internet. At
that time, I only knew about one other person who had ALS, and that was the british
physicist Steven Hawking. I have met him a couple of times, and he has lived for several
decades with ALS, so I was somewhat surprised to learn from the physicians on the
internet, that I only had a few years left to live. So in general, dont listen too much to the
physicians, better listen to the physicists. I will give more examples, later in the talk, that
you should not listen too much to the physicians. Well, of course, you should listen to
the physicians if you break a leg or if you have pneumonia, but when it comes to ALS, it
is my experience that the physicians only know some technical details. They know
nothing about how to live with ALS, so here you better listen to the other Pals, for
instance me.
Anyway, I was fully determined that I would continue to live an active life. The
immediate problem was that I could not really take care of myself. I took a 3 month
leave of absence from the university to prepare for my new life. During those 3 months,
the ALS advisers, who are associated with the Foundation of Muscular Dystrophy in
Denmark, helped me to find a new apartment, to apply for a lift van, and to ensure that I
got personal assistants.
1. The Danish System.
Now I will say a little more about how it works in Denmark. We are lucky to live in a
country, which holds the world record in income tax. We just got it back from Sweden,
and now we will keep it! I used to think that it was a disadvantage, but I now consider it
to be an advantage. It implies for instance that we get, for free, all the help we need.
The most important thing is that if you have an appropriately prestigious illness, as for
instance ALS, and you are not able to take care of yourself, then you have the possibility
to get personal assistants. This means that you can hire a number of people, to take care
of you. This allows most people with ALS to stay in their own home, even if they have
no family members to help. Just like me. And the important thing is that I hire and fire
my personal assistants myself. The personal assistants are paid by the community, but
the community does not interfere at all. They don't care if you have 8 hour shifts or 16
hour shifts, I have 25 hour shifts. Moreover, I did not tell anyone in the community that I
was going to Iceland, I just went. Presently, I have 10 personal assistants, some work
full time, others part time. I have more than 24 hours of help a day. In addition, I have
the possibility to have 2 personal assistants, for a number of days or weekends and 3
personal assistants for vacation each year. And, as I said, the community does not
interfere! With 10 personal assistants, my apartment sometimes look like a railway
station. Now, icelandic people probably don't know what a railway station is, but it is a
very busy place where people are going in and out.
When you have ALS, you will soon need some hardware. Various kinds of lifts, ramps,
wheelchairs, computers, a hospital bed etc. In Denmark, it is of course all for free, as it
should be in a modern country. In each region, there is a hardware central where you can
get essentially all you need. In addition, every person with ALS has at least one contact
person there, to help getting the appropriate equipment. It is not funny to have ALS, if
you always have to stay at home. Well, it is not funny to have ALS at all! What I mean
is that transportation is very important for living an active life. The wheelchair will not
take you very far, and for most people with ALS, public transportation is not an issue.
So you need a lift van, which under normal circumstances is quite expensive. So in
Denmark we have a system, where you can sort of lease a lift van for approximately 250
Euro per month. The exact price depends on your salary. Additionally you have to pay
for insurance, gasolin and repairs. So it can be quite expensive if you are retired, as most
people with ALS are. However, most people with ALS in Denmark have such a car.
Each six years, you must lease a new lift van, so you are not stuck with paying repairs
on an old car.
Let me also say something about work. Maybe you think that staying at work is not
really relevant for people with ALS. If so, I disagree. Obviously, if you get ALS when
you already old, bold and grey haired, then you are probably out of work in any case.
But many people get ALS in their thirties or forties, and they might want to stay at work.
At least for some years and possibly only part time.
In Denmark we have a flex job system, so that you can stay at work, even if you are
seriously handicapped. You even keep your normal salary. The employer pays part of
the salary and the rest is tax money at work. Now, you can of course not continue
working, if you have a job that is physical, at least not for long. But many people have a
job, where they are sitting in front of a computer all day, and then you can easily
continue working until you get old, bold and grey haired.
Let me finish this part of my talk by saying that it is not always going so smoosly. I have
had dozens of applications being rejected, and there are regularly cutbacks in the social
sector, so there is always something to fight for. Moreover, there can be huge
differences from region to region in Denmark.
Anyway, I think it is fair to say, that people with ALS is the group of handicapped
which get most help in Denmark. As soon as you have the diagnosis, there are lots of
people ready to help you. I like to believe that it is because we are so active, intelligent,
good looking and charming. And modest, of course!
2. The Ventilator.
Let me say a few words about the ventilator. Unfortunately, there are many
misunderstandings about ventilators. That I cannot breathe myself, is really a minor
handicap. The ventilator can completely compensate for this handicap. It is more serious
that I cannot use my hands, no machine can compensate for that. I don't see any
disadvantages with the ventilator, it breathes completely natural for me. Remember, that
your ventilation is also automatic, you don't give commands to your muscles that they
should breathe.
Another misunderstanding about ventilators is that they are enormous machines. Well,
there are 3 types of ventilators:
1. Hollywood Ventilators.
2. Old Fashioned Ventilators.
3. Modern Ventilators.
Hollywood ventilators appear in Hollywood movies, you are lying inside a Hollywood
ventilator and it is of the size of a Volkswagen. Perhaps you have seen the Hollywood
movie The Big Lebowski? Approximately one hour inside this movie, you will see a guy
lying inside a Hollywood ventilator. That has of course nothing to do with reality, except
in Hollywood. Most people in Denmark have old fashioned ventilators, well not most
people in Denmark, but most people with ventilators in Denmark have old fashioned
ventilators. The old fashioned ventilators are of the size of a case of beer. That is, a case
of beer with 24 beers. After my talk, you are welcome to come up and see a modern
ventilator. My ventilator is not larger than a six pack of Heineken!
Finally, a misunderstanding about ventilators is that you have to be a nurse to take care
of a person with a ventilator. Well, just look at my personal assistants! No, most of my
personal assistants come directly from high school, and have no experience with health
care work, but after just 4 days of training at my place, they are perfectly able to take
care of me.
Now, you might ask, what happens when the ventilator breaks down? Then I will die
instantly, of course! No, of course not! First of all, at home and when I am traveling, I
have 2 ventilators, the other one is back in the hotel room. Secondly, my personal
assistants have a device so that they can ventilate me manually, so I will not die unless
they get tired....
3. Communication.
Now, let me say something about communication. A good safe choice for
communication is the spelling system, if you cannot speak and if you cannot use your
hands to write things on a piece of paper. As you can see, the alphabet is inserted into a
5 times 6 matrix. The system works in the following way: My personal assistant counts
the rows, one, two, three, until I lift an eyebrow. She, or he, then reads the letters in the
appropriate row, until I again lift an eyebrow. This gives us the first letter in the first
word of what I want to say, and the process is then repeated for the next letter, etc.
A B C D E F
G H I J K L
M N O P Q R
S T U V W X
Y Z Æ Ø Å
Anyone can learn the spelling system and be able to communicate at some speed. The
advantage of the spelling system is that it always works. It works inside and outside, it
works in the car, it works in the shower and it works in the bed.
The disadvantage is that it takes a long time to say very long sentences. For that, you
need a computer, and some way to control it. Perhaps, I should explain how I use my
computer? I can essentially only move my eyeballs. There are cameras in the computer
that follow my eyeballs, so I can move the cursor by moving my eyeballs. I click, by
holding the cursor stationary at a certain point in half a second. This computer is
standard for people in Denmark, who can only move their eyeballs. The price of such a
computer is 20 thousand Euros, which is 150 thousand danish kroners, which is
equivalent to about 5 zillion icelandic kroners. After my talk, you are welcome to come
up and see how I spell the words, using only my eyes. Notice that there is no physical
connection between the computer and me, there is only the eyes. It is somewhat like
seeing pornographic movies on television, you can watch but you cannot touch!
However, you can get an efficient computer system for much less money. Namely a
system called Brainfingers, for a prize of about 175 dollars. This is less than a thousand
danish kroners and about 10 thousand icelandic kroners. There is another reason why I
mention this system. When you get a ventilator in Denmark, you more or less have to
sign a contract which says that the ventilation treatment will finish when you are "locked
in", which means that you cannot communicate anymore. The physicians say that when
you have ALS, you will eventually not be able to communicate anymore, and then they
find it ethically correct to stop the ventilation treatment. But don't listen to the
physicians! Using Brainfingers you can always communicate, at least if you are clear in
your mind!
Brainfingers works through a headband and scanning. Brainfingers amplifies any muscle
you may have left, so you can for instance control your computer by lifting an eyebrow
or by an infinitesimal bite. And even if you have no muscles left at all, you can use
Brainfingers by using brainwaves, that is E E G, electroencephalographics. In
Brainfingers you can use alpha waves and beta waves, where beta waves have higher
frequencies than alpha waves. If you for instance think about sex or Margaret Thatcher,
you immediately get into the high frequency range, that is, the beta waves. On the other
hand, if you think about sex with Margaret Thatcher, you immediately get into the low
frequency range, that is, the alpha waves. And in this way, you can control your
computer!
I will conclude this talk by admitting that I am among the 5 percent of Pals, where ALS
not only hits the physical abilities, but also the intellectual abilities. I simply become
more and more intelligent....