We’ve covered quite a few strange disorders
recently, not to mention diseases, conditions, and even just painful things that can happen
to you, but the topic of today’s show might be one of the saddest and most horrifying
specters that nature can do to a person. If you’ve seen the documentary film, “The
Diving Bell and the Butterfly,” you’ll already know what we are talking about and
why we say this syndrome can be very sad for the sufferers and anyone close to them. If you can imagine it happening to you, you
would no doubt agree this is possibly the most frustrating of all human conditions. But let us now explain what we are talking
about, in this episode of the Infographics Show, What Is Locked-In Syndrome? Ok, let’s start with the movie we just mentioned,
“The Diving Bell and the Butterfly.” Imagine this. You are a famous editor, leading a team at
Elle magazine in France. You’re a handsome socialite, clever, funny,
and live an exciting and invigorating life. You have two children that you dearly love. Then one day you have a stroke and fall into
a coma. 20 days later you awake…except you don’t
really awake, not fully. You can hear, and see, think and perform any
mental task you want, but you can’t move. You are locked-in. This happened to the editor in question, Jean-Dominique
Bauby, in 1995, when he was just 43 years old. He wrote a book while he was in this condition
as the one thing he could do was blink, and while it was utterly laborious, he blinked
the letters of the alphabet using a special system to someone taking notes. Here’s a quote from this blinking, dying
man, “I am fading away. Slowly but surely. Like the sailor who watches his home shore
gradually disappear, I watch my past recede.” His condition is often called a pseudocoma,
because in many ways you are still in a coma. Perhaps Mr. Bauby was fortunate, though, in
view of the fact that he didn’t have Total locked-in syndrome. That is when you can still think but not move
anything at all. You are still thinking, but no one knows that
you are. Scans, however, will reveal that there is
activity happening inside of the brain. In the case of locked-in syndrome, 50 percent
of the time it’s the person’s friends or relatives that usually notice the patient
blinking at them in a way that shows they are conscious. Let’s explain some more. The main cause of locked-in syndrome is brainstem
hemorrhage. This is bleeding in or around the brain, which
could be caused by high blood pressure, extreme drug abuse, brain trauma, tumors, infection,
or heart disease. It can also be caused by something called
“infarct”, which means the dying, or in medical terms the “necrotizing” of tissue. This is because the area has been deprived
of blood. For those that have a stroke, about one percent
will develop the condition of locked-in syndrome. If you have locked-in syndrome, you could
be like that for a long time, only if you have constant care around you. You can’t really do anything on your own,
and that includes breathing, so you need help for that. It cannot be treated as such, but you may
live as long as 10 years since the disaster first strikes. In very rare cases, people gain some motor
function back, and in even fewer reported cases, people made a full recovery. While most people have their cognitive functions
fully intact, a National Center for Biotechnology Information report tells us that in one study
consisting of 44 people with the condition, eight people said they had memory problems
and six others had attentional deficits. Some people even retain their proprioception,
something sometimes called the sixth sense, which is the ability of the mind to know what
the rest of your body is doing or where parts of the body are. What about those two people that seemed to
miraculously come out of being locked-in? One of them was a British woman called Kate
Allatt, who had a stroke in 2010 and later woke up from a coma. She knew she’d woken up; she even thought
about her chores, but she was locked-in. While this may sound like a good thing in
light of almost being dead, she wasn’t happy at all, especially as others didn’t realize
she was thinking, and worse, feeling. She told the BBC in 2011, “I wanted a pillow
over the head. I hated it. My life was nothing like it was, and I was
going to be forever an observer in my kids' life. I just wanted to be put out of my misery.” But, then one day she noticed she could move
her thumb, if only very slightly. She later learned how to speak again, and
sometime later walked out of the hospital. In 2009, a former British police officer called
Richard Marsh had locked-in syndrome, and he too has recovered – well, 95 percent
recovered. He told The Guardian, “My brain protected
me – it didn't let me grasp the seriousness of the situation. It's weird but I can remember never feeling
scared. I knew my cognitive abilities were 100%.” He said one of the worst things about having
the condition was when his wife was in the room with the doctors, telling her he had
a two percent chance of survival and if he did come out of the coma – they didn’t
know he was locked-in – he would be a vegetable. "I could hear the conversation and in my mind
I was screaming 'No!'" he told The Guardian. Tony Nicklinson, a British man who had a stroke
in 2005 and then locked-in syndrome, actually wanted to die and fought the British government
for the right to do so, by means of euthanasia. He could communicate with his eyes, but he
said the condition was exhausting and the life he had was undignified. The Guardian even arranged for an interview
with the man with the public via Twitter. When asked if using Twitter made him feel
better and want to stay alive, he tweeted back, “No 'coz I still can't speak. Speaking is important to me and Twitter cannot
alter that.” Asked what his first thoughts where when he
came around from the stroke and realized he was locked-in, he replied, “Bloody Hell! This can't be happening. I don't want to be paralyzed.” He said even though no life is a sad thing
to think about, ending it is all he thinks about. In 2012, after never beating the government
for his right to die, he died at home from pneumonia. On that sad note we will add another sad note. The day we are writing this show is the day
the great Stephen Hawking died. Hawking didn’t have locked-in syndrome,
but most of his body was paralyzed due to amyotrophic lateral sclerosis, a kind of degenerative
motor neurone disease. His ability to communicate with the world
in a physical sense was never easy, but his words will go down in history. So, on this day we’d like to say RIP to
Mr Hawking, a man that beat all the odds. This will of course be a belated RIP when
you hear it. So, how do you think you’d deal with locked-in
syndrome? Would the stressful and difficult communication
with your eyes be a good enough reason to live, or would you want to have your life
taken away? How about those few days when no one knows
you are somewhat awake, how do you think you’d feel? Let us know in the comments! Also, be sure to check out our other video
called What Is Stone Man Syndrome?! Thanks for watching, and, as always, don’t
forget to like, share, and subscribe. See you next time!
