Paralyzed and cannot speak or move. What would you do?
Locked-In Syndrome
I recently read an amazing book: The Diving Bell and The Butterfly by Jean-Dominic Bauby. It is very moving indeed. Bauby was the Editor-In-Chief at Elle, the fashion magazine in Paris, France. He was witty, rich, sought after by women, worldly and handsome. He had it all.
Then, at the age of 42, he had a devastating brain stem stroke which left him totally paralyzed, unable to speak and move, yet fully conscious. We call this “locked-in syndrome”; the person is there, fully aware, but is unable to move and can’t communicate normally. [here’s the film trailer from YouTube]:
It is a quite horrifying end for anyone but especially for Bauby, an intellectual and a socialite.
There was just one saving grace. Fate left him with the ability to blink his left eye. Pretty soon he was using this to communicate. He gained a kind of a life.
Eventually, Bauby was able to dictate an entire book about his experience. Somebody would read out the letters of the alphabet and he blinked when the right letter was spoken. The entire 130-page book was thus assembled one letter at a time.
Bauby likened his condition to living under a heavy weighted diving bell at the bottom of the sea. But his spirit was like that of a butterfly, light and wanting to be free. Hence the title he chose.
It could have been a grim book but in fact it is littered with humour and penetrating insight. It’s one of the best books I ever read. I repeatedly laughed out loud. I highly commend it.
The book was an instant best-seller and a movie was made of it, which I can also recommend. It is brilliantly done. Julian Schnabel won the Best Director prize at Cannes, a Golden Globe Award and an Academy Award nomination for Best Director.
Sadly, Bauby died just ten days after the book was published. He died of a fatal urinary infection, one of the risks of needing a catheter.
A Diet Factor?
What mesmerized me about Bauby’s story was that he had gone on a diet just one week before his paralytic stroke.
If you know my work you will know that I stand more than anything for the catastrophic effects foods can have on people. This goes beyond what we used to call food allergy. Genetic intolerance plays a part; actual toxins in food; hormonal, neurological and inflammatory pathways; immune system overload and many other complex mechanisms.
I have written often that there is no such thing as a safe, healthy diet. Whatever eating plan you can conceive, somebody, somewhere, will be allergic to the allowed foods. We all have to work out for ourselves what our own safe foods are and stick to them.
I have no doubt in my mind that the switch in eating habits is what precipitated Bauby’s stroke at such a young age. Something he was eating was toxic to him and set up severe inflammation in his body. The food might be perfectly well tolerated by the majority of us.
This is the whole theme of my book “Diet Wise”: find and eliminate your own toxic foods. [www.dietwisebook.com]
My Patient
I had a kind of locked-in case, which I described in “Diet Wise”. Angela was 18 years old when I met her. She had a condition called cerebral palsy girl, which meant she couldn’t speak and had immense difficulty moving purposefully.
Long story short: she had food allergies, I found and neutralized them, and within 3 weeks she spoke for the first time. I don’t mean she learned to speak; I mean she started talking off the bat.
Angela’s first words were: “Mummy, I love you”. Her delighted parent nearly fell through the floor. It was only a matter of days before she was chatting away and said “I want to go to the pictures (movies).”
Angela had been locked in and written off by the doctors as no good. No one even thought of trying to communicate with her. Yet all the time she could hear and had feelings; she understood words, language and concepts. Angela was “brain damaged” in the motor sense and doctors had made the unwarranted assumption that she was also damaged in the consciousness sense as well.
What had happened was that her neural pathways were OK but inflammation, due to toxic foods, had caused them to malfunction.
His First Communication Caught On Film
What prompted me to write this piece was not just the Bauby book but a recent BBC program, investigating brain death, in which a man’s very first communication was caught live on camera. It was an amazing moment.
Richard Rudd had been horrifically injured when a motorcycle slammed into him at high speed. He might have been OK, with skilled surgery. But eventually an overwhelming infection attacked his body and he slipped into a coma. The brain damage caused by the infection left Rudd totally paralyzed. He ended up on a life-support machine.
He came to in a locked-in condition. No-one knew. The decision had been made to switch off his life support machine. But Rudd was able to blink and begged for life. This heart-wrenching moment was captured by a BBC crew making a documentary about patients with serious brain injuries.
Rudd has two daughters Bethan, 14, and Charlotte, 18, and that must have been part of his will to live.
Since the filming and before the program aired, Rudd learned to move his head an inch either way, smile and grimace. However, he is unlikely to ever come off his ventilator. Sadly, locked-in syndrome is usually fatal. Studies suggest that, within four months, nine out of ten people with locked-in syndrome die (Bauby lasted 16 months).
Fiction
All this sounds like one of Edgar Allan Poe’s stories, “Premature Burial”, which is about the horrors of being buried alive.
There have been many urban legends of people being accidentally buried alive. Legends included elements such as someone entering into a coma, only to wake up years later and die a horrible death. Other legends tell of coffins opened to find a corpse with a long beard or corpses with the hands raised and palms turned upward. Robert E. Lee’s mother started what has become a legend about the premature burial of Ann Hill Carter Lee, the wife of Henry Lee III. On his deathbed in 1799, George Washington made his attendants promise not to bury him for two days.
It reminds me also of a TV program I saw as a kid. I think it was Hitchcock, or maybe “The Twilight Zone”: a man involved in a car crash was paralyzed with the exception of his little finger. The doctors all thought he was dead and were going to perform an autopsy on him the following morning. The paralyzed man thought that all he needed to do was to wiggle his little finger once the doctors arrived to start the autopsy and he’d be saved, however during the night an attendant had moved him so the hand with the movable pinky was now hidden underneath him and couldn’t be seen.
As the doctors were about to cut him up the man began to cry and the doctors saw his tears and so, in the end, he was saved.
What You Need To Do To Avoid Locked In Catastrophe
Stay healthy
Don’t engage in any “living will” notions, asking not be left on life support. You don’t know how you will feel when the fateful moment of doom is upon you. At least three cases I have laid before you were very glad of life, even in unbelievably awful conditions.
Dr. Keith, sometimes I wish you had some of those little icons at the bottom of the page that would enable to people to share your articles with friends on facebook or twitter and so on. Thank you for your wit, wisdom and insight.
I’ll have to figure out how to do this Linda! You’re right.
Keith
There are drugs that cause the locked-in effect, thus when used homeopathically can cure the effect.
Bravely said Roger.
But unless you have unlocked a locked-in with homeopathy,what you say is pure theory.
Have you?
Keith
My wife died 26JUN2010 as a consequence of a series of falls. She was diagnosed as having Alzheimers, but really had mainly the consequences of long term hypo-thyroid. (No T3). She lasted only two weeks. I regret that we didn’t try harder to give her another few days just in case. We celebrated (??) our 65th anniversary the day before she died. I’m sure she knew all about it.
I have a question:
I have a friend not too unlike the man in the story.
A manager of a super market , a county commissioner.
The life of a party sort…
Then he lost the ability to speak spontaneously. He is limited to 1 to 5 words at a time which is an improvement from 1 to 2 a year ago.
He was in his early 60’s the doctors thought it was Alzheimer’s, then Pick’s, then depression, then PTSD, then frontal lobe dementia.
I have done AIT(auditory integration training because he had been suicidal)on him and it has had some positive results: His posture returned and his facial features look more normal (He had had a flatness.), of course the suicidal talk stopped. I then did Bioacoustics with him and he is focusing on those talking to him(not looking through them) and he is laughing appropiriately. BUT now here is the question….How to we stimulate the speech centers other than what I have been doing?? I am convinced HE IS IN THERE and will return. I know that I need patience and PRAYER but if you have any thoughts I am open. Thank you, Joanne
Absolutely keep communicating with him Joanne. If you know he’s in there and responds but once, he’s there!
Do follow the lowering of toxic foods advice.
Otherwise I’d think of 3 therapies: SCENAR, homeopathy and acupuncture.
Good luck with this man,
Keith
Dr. Keith-Like you–I was totally wiped out by the Bauby book-and even sent copies to friends.Now my theory was that he was riding in a brand new car-and the”new-car” smell-along with food allergies contributed to his near fatal brain-stem stroke .Since M.C.S. and food allergies are dismissed by orthodox medicine as inconclusive and not a “real” diagnosis–what do you do but your own research–which I have done-and authenticated my symptoms.actually-changing diet will definitely affect M.C.S.-particularly if one lowers daily caloric count.I worked as a med. tech. for an Environmental doctor-and learned A LOT about alternative Medicine-J. Later
Dr. Kieth,
I have a lot of respect for your site and knowledge and have a copy of one of your books. ( I have studied alternative and natural diet and treatments for 40 some years.)
However your attitude on Cancer is not entirely on target.
I survived Prostate, Bone, Terminal Liver and Pancreatic Cancer 32 Years ago when my Wife of 20 years left me with 3 teenage girls to raise. Since then I have remarried and have 3 boys in their twenties and a daughter 13 years old, all healthy. I am 73 years young and thriving.
I did entirely alternative things as the medical route offered NO HOPE and used the Shotgun approach including Gersons, Kellys, Raw glandulars, Chelation, etc etc etc. not knowing if any of them would work. I was days from death and unable to work for 2 years. Since then I have talked to maybe a hundred people with serious cancer.
Without fail the ones who went the medical route died early and the ones that seriously followed alternative therapies alone (not supplemental therapies and not in conjunction with Chemo Radiation or surgery) lived and overcame the cancer. The answer to Cancer is prevention and more Natural nontoxic treatments once cancer is found.
I know this is not double blind studies but I would go with what works including eating right for your blood type and whatever works for the individual.
please respond,
Regards
Mac
Dear Mac, this isn’t about locked-in syndrome but I will reply to you here.
You missed the figures entirely, read them again:
controls 10- 50% survive; with Lipoic acid, 90% survive. I can’t think of more graphic figures.
Not all science has to be double-blind you know. But there have to be controls.
Dear Mac,
I did ask that people not write and tell me they did well. It means nothing, except to you personally.
You accuse me of being “off”. Let me tell you Mac, whether it’s comfortable or not, millions of people have survived cancer using the orthodox route. Your claim that none survive is a nonsense. Also the claim that all the people who did alternatives survived is totally false and untenable. That’s exactly the kind of nonsensical propaganda hype that I am speaking out against. Nobody is going to learn anything if people just follow these myths haphazardly, with no science or method.
I have many times used holistic medicine to help people who chose to take chemo etc. It’s their right to choose. People do survive after chemo (sometimes). I also used holistic methods alone and people do survive cancer with that (sometimes).
Dr.. Kieth,
To repeat your words: the fact that some who ate poisonous mushrooms survived by taking the treatment is not science and there were no double blind studies. Figures don’t lie but liars can figure.
Anecdotal observations are not accepted as science by the powers that be in the medical field as you know.
regards,
Mac
Dear Keith,
I would like to know if your book has anything to help women that has PCOS- PolyCystic Ovarian Syndrome and Fibromyalgia the effect of PCOS is bad on some women and some of us has a hard time losing the belly fat and the fat under our arms, it’s like we are not heavy anywhere else but these two places. Thanks Ruth
NOt sure which book you refer to Ruth,
The freebie you get when you join this (How To Cure Yourself Of Any Disease) has the strongest pointer: get your body load down and let your body fix itself.
It starts with diet unburdening and DIET WISE is available here: http://www.dietwisebook.com
Dear Dr. Keith ,
Normally , I’d never write to a blog ; yet , this time I cannot pass.
I am early in my 60’s, an early retiree retail grocer, and had a bookkeeper for the last 10 yr. named Joanne Snow. These coincidences just keep coming .
I have experienced this containment condition. Last Sun afternoon while preparing to photograph my grandsons 4 th birthday cake cutting, I felt odd. I suppose I had for some hours prior only now intensified.
Waiting for straglers to arrange themselves, I left my position leaning against the kitchen doorway to stroll into the livingroom and take a seat for the grand moment. I never made the seat as I walked in a circle. Upon noting this , I “aimed” for the doorway . Thought I was there when I felt the wall brush up against my nose. Gently I slid to wind up leaning on my son. He assumed I was jockeying for better vantage to photograph from.
His father realized I was going down and stepped behind me . Assisted to the couch, my daughter the pediactric physiotherapist then took control. She keep me from drifting off and performed neurological testing to determine my condition.
Paramedics and fire response teams suspected stroke and drove I’m told at rates up to 160 kph to the trauma hospital. Around 7 pm., the emergency Dr. assessed and asked my daughter what measures to take for me as I exhibited full catastophic stroke .
Now , I must say that I found all the commotion rather interesting. I had full command of reasoning , sight, smell, sound, and PAIN. The examination assured them that I was not responsive to pain from their viewpoint . Inwardly I screamed . My mouth failed to open and my jaws would not move. And yes every inch of me was “nailed” to that stretcher.
My breathing seemed normal and heart rate seemed normal . Yes I was moving my eyes to communicate with my daughter. Curiously, I had no sense of forboding, no concern , no anxiety.
A full evening of testing and the neurologists (all present due to the unusual specimen presented to them ) were perplexed . Their word . I was next moved to safe keeping and MRI planned for the next am. My daughter had used her skill to detect slight motor signals in my hands and calfs . She said that since I was not busy that I should repeat her test myself whenever possible. Considering the racket in Emergency , I wasn’t sleeping and this would keep me focused and not drift off.
All that early am. , I worked . By about 3 am . my right fingers, then hand lifted. When the night nurse checked me at 5 am. I showed her . Then I clenched my teeth and released to open my mouth. I had to be asked if I could speak before I tried it. I did not understand the sound but it was something.
To shorten this a bit , that day was full of hourly progress . I was transferred to a stroke ward bed . Late afternoon a MRI was done. A little sleep that night.
Next am. , I asked the nurse what hoops I had to jump through to get out of there as I knew I did not belong there. I bent some of their rules by sitting on the edge of the bed, standing unassisted, and walking to the washroom . You are supposed to wait for the experts to help you and verify your capacities !
The team of doctors sent in 3 more doctors to quiry me about psychological issues. Then , they all surrounded me in bed and the team leader spoke. Condensing a bit , we find no physical issues that would be stroke related. Thank you ! We believe that this could be a conversion condition. See your family Doctor.
Well maybe conversion, I’m studying that now.
I have a profound knowledge of containment.
Powerful stuff Richard. Thanks for sharing
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[…] be too bad an experience. At least nothing like the misery so aptly and movingly described by Jean-Dominic Bauby, the celebrated former editor of Elle magazine, who was himself “locked in”, after a disastrous […]