In Daniel Bor’s book The
Ravenous Brain: How the New Science of Neuroscience Explains Our Insatiable
Search for Meaning, Bor touches on a condition called “locked-in syndrome.”
Locked-in syndrome is a rare condition where a patient is conscious but physically
paralyzed. According to the International Encyclopedia of Rehabilitation, a
lesion to the brainstem causes locked-in syndrome. (Beaudoin, 2013) Bor talks
about one victim of this frightening condition, Jean-Dominique Bauby, who had a
stroke in 1995 while he was the editor of Elle
magazine in France. He was in a coma but when he woke up twenty days later he
realized his life had completely changed. Bauby was fully aware and conscious,
but was unable to move anything except his eyes and his head very minimally.
Like most people with locked-in syndrome, Bauby created a code by blinking to
communicate. However, Bauby’s code was a little different since he used it to
write a book, The Diving Bell and the
Butterfly, about his condition and what it was like living with it. He and
an assistant used an alphabet board to determine what letter he wanted to use
by blinking his left eye. (Bor, 2012)
In another case, Sandy Nette got locked-in syndrome from her
chiropractor. The way her neck was manipulated caused Sandy to have a series of
massive strokes and the doctors weren’t even sure she would survive. Although
Sandy did not write a book like Bauby did, she was able to make a recovery and
walk and talk again. Like Bauby and his assistant. Sandy and her husband came
up with a system of blinking to communicate. Slowly as time went on, Sandy was
able to start moving other parts of her body, first her toe, then her right
hand, then the left, and so on. Since this condition has no treatment and most
people don’t recover, the doctors were shocked at this improvement. She began
rehabilitation and began using a power wheelchair. After Sandy moved back home
with her husband, she was starting to make sounds again and she had surgery on
her feet, since the muscles had gone through serious deterioration from not
being used. She is now able to speak and stay on her feet for short periods of
time. (Reilly, 2013)
The reason this stuck out to me in the book was how amazing
it is that people can do so much with such a life altering condition. Although
the two cases have completely different outcomes, they are both incredible in
their own way.
Beaudoin, N. (2013). Locked-in syndrome. Retrieved
from
http://cirrie.buffalo.edu/encyclopedia/en/article/303/
Bor, D. (2012). The ravenous brain: How the new science
of consciousness explains our
insatiable search for meaning. (p.
83). New York: Basin Books.
Reilly, R. (2013, August 18). 'my chiropractor gave me
locked-in syndrome, but i
survived': Astonishing recovery
of woman, 46, who beat the odds to walk and talk again.
Retrieved from
http://www.dailymail.co.uk/health/article-2383727/My-chiropractor-gave-locked-syndrome-I-survived-Astonishing-recovery-woman-46-beat-odds-walk-talk-again.html
This was a very interesting blog post. The symptoms sound very similar to those of sleep paralysis, which I would experience every once in awhile. What a fascinating yet frightening topic.
ReplyDeleteWhat I find amazing about these stories is the strong mentality that both patients possessed. They persevered through such difficult situations. Even though the illness was going to change their lives drastically, it was not going to hold them down and discourage them to live their lives. Although there are so many experiments that state that positive thinking does not cure a person, I do believe the mental stamina and outlook determines how much energy one will have to endure treatment. Without a positive outlook and strong will power, energy will deplete at a faster rate and submission to the issue is the next step. These patients seemed to grasp this concept and looked to overcome their health issues.
ReplyDeleteIt is amazing how quickly one's life can be turned completely inside out. The things like walking, talking, and eating, things we do every day, are now major goals and accomplishments to the two patients mentioned in this blog. Even things that we take for granted and complain about, like writing papers or running errands, are things that these two patients will never do again. From living a normal and successful life, to waking up in a hospital bed fully conscious of everything and everyone around them, but having little to no way to communicate must be absolutely terrifying. That's what makes the progress that each of the patients had even more incredible. They are making the best of a terrifying and life-altering situation. They have truly become an inspiration for all those who have Locked-In Syndrome or know of someone who does and a reminder to those who have taken all they have for granted. I sincerely hope that technology and medicine catches up to this condition and helps create a road to recovery for all those suffering.
ReplyDeleteWhat was unbelievable for me was how calm and optimistic both the patients were, even if they had such a serious condition. It is heartbreaking to think about how much their lives had changed after the strokes occurred. I found an article that describes Bauby's scenario (http://www.nytimes.com/books/97/06/15/reviews/970615.mallon.html).
ReplyDeleteThe article talks about how Bauby was on a diet before the stroke occurred, and he obviously had no clue that he would be losing about sixty pounds in twenty days. A normal person would be in shock after knowing under which circumstances they lost an incredible amount of weight. But Bauby is surprisingly optimistic about the entire condition, even humorous, as seen in his book. The way he wrote this book is also incredible. He moved his left eyelid "in response to an alphabet rearranged according to the letters' frequency of use." His assistant would record the letters, and he wrote the entire book this way.
These stories are always so amazing to hear and they never fail to remind me how, in certain situations, we truly are powerless. I can't even imagine living my life how I am right now and then within a day have it completely changed, to the point where I can’t move a single part of my body. I feel like I would lose all hope and just give up on life. To see people like Bauby who took his experiences and wrote a book - which probably took an insane amount of patience and perseverance - or to see Sandy experience the massive amount of strokes and still be able to recover, is inspiring to say the least. Something I didn’t anticipate in learning more about the science of different diseases and syndromes is that along the way, we learn invaluable life lessons through the people we’re reading about.
ReplyDeleteThese stories are always so amazing to hear and they never fail to remind me how, in certain situations, we truly are powerless. I can't even imagine living my life how I am right now and then within a day have it completely changed, to the point where I can’t move a single part of my body. I feel like I would lose all hope and just give up on life. To see people like Bauby who took his experiences and wrote a book - which probably took an insane amount of patience and perseverance - or to see Sandy experience the massive amount of strokes and still be able to recover, is inspiring to say the least. Something I didn’t anticipate in learning more about the science of different diseases and syndromes is that along the way, we learn precious life lessons through the people we’re reading about, which to me, has been just as beneficial and invaluable.
ReplyDelete