What Is Locked-in Syndrome?
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!