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Showing posts with label The Owen Lab. Show all posts
Showing posts with label The Owen Lab. Show all posts

Thursday, August 31, 2017

Pulling the Plug: Given a Death Sentence for Being Unable to Respond


Miracle Girl: Pulling the Plug: Given a Death Sentence for Being Unable to Respond

One in five apparently vegetative patients are actually covertly aware. Should they receive the death penalty for their body's incapacity? 
The more we learn about cognition in the vegetative, the more we realize how little we know. We should keep that in mind when considering pulling the plug.

Friday, August 25, 2017

Celebrating Coma Day: 5 Explorations of Covert Awareness


Miracle Girl: Celebrating Coma Day: 5 Explorations of Covert Awareness

Celebrating Coma Day -- the anniversary of my awakening -- by exploring my journey and the researchers who allow the covertly aware to speak for themselves. What better way to mark my rebirthday than by cheering the heroes of covert awareness?

Wednesday, August 16, 2017

Tennis Study: Revealing Active Minds Adrift in Inactivated Bodies


Miracle Girl: Tennis Study: Revealing Active Minds Adrift in Inactivated Bodies

A seemingly vegetative patient participated in his own care using the tennis study technique. But thousand of covertly aware patients languish...for now. 

Scott Routley's heroic efforts reach out from the gray zone of consciousness will help countless others. 

Thursday, August 10, 2017

Friday, July 21, 2017

The Owen Lab: On the Road to Widespread Covert Awareness Testing


Miracle Girl: The Owen Lab: On the Road to Widespread Covert Awareness Testing
My mom thinks nurses were trying to nudge her toward eventually pulling my plug. She refused to even consider it. But what about the other covertly aware consciousness disorder patients?
False hope is a danger, yet false doom can be deadly. Mobile testing by the Owen Lab may save the lives of countless covertly aware vegetative patients.

Wednesday, July 12, 2017

Covert Awareness: Into and Out of the Gray Zone of Consciousness


Miracle Girl: Covert Awareness: Into and Out of the Gray Zone of Consciousness

My coma awakening was a quirk, but Dr. Adrian Owen is making awareness testing a science. Few consciousness disorder patients recover as fully from the "gray zone'' as I have. But the work of dedicated researchers may change that.

Tuesday, August 23, 2016

Tennis Anyone?--Communicating with the Vegetative


Miracle Girl: Tennis Anyone?--Communicating with the Vegetative

While the Owen Lab is still in the process of making covert cognition detection widely available, they have already produced tangible benefits for a few seemingly vegetative patients...and their families.

In the case of Jeff Tremblay, the results have been quite moving.

Monday, August 22, 2016

"Hello, I'm in Here!"--Giving Voice to the Voiceless


Miracle Girl: "Hello, I'm in Here!"--Giving Voice to the Voiceless

I was cold; Kate Bainbridge was thirsty. Our discomfort was ignored because our caregivers though we were vegetables, unable to feel pain. That may soon end if the Owen Lab's covert awareness detection research continues to pay off.

Not only would covert cognition be less covert if they succeed, patients who will never recover as well as Kate and I have may someday have a say in their own treatment.

Friday, July 24, 2015

Donating my brain to science while I'm still alive

Dr. Adrian Owen, wearing an EEG cap, probably much like the one I wore when an EEG was performed on me during my coma.
While I am an organ donor, I'm quite that dedicated to the cause. I do occasionally use my brain as something more than a counterbalance to my nose, which is still somewhat prominent, despite my nose job. But I will be answering Dr. Adrian Owen's questions about the things I experienced in my my brain while I was covertly aware during my coma. It will be for his upcoming book as he comes to the relevant chapters.

This week, I realized that Dr. Adrian Owen had finally responded to the email I had sent him detailing my coma experience, at his request. It had languished in my Junk folder for a few days until I noticed it. He had been so wrapped up in his book that he hadn't gotten a chance to respond. As as writer, I can completely understand that. Anyway, here's the backstory: I had sent him a tweet when the Skeptical Inquirer article came out because I thought he and the Owen lab would be interested in the article, since it refers to their work extensively. The Owen Lab website does an excellent job of presenting media and journal links. In fact, much of the information in, "Covert Cognition: My So-Called Near-Death Experience," was gleaned from article and media links on their website. When my article is made available in the Skeptical Inquirer archive, I would be surprised if they didn't add that to their library, as well.

I also suspected that Dr. Owen would be curious about my case, since it's rare that patients in my situation recover so fully. And how many of them are also writers who can articulate their experience well? Indeed, I had sent an email when the article was accepted. But for whatever reason, I never received a response, not even in my Junk folder. It's possible that's where my email wound up, as well, amidst the ads for penis enlargement miracles and urgent correspondence regarding unknown benefactors in Kenya.

At any rate, he told me that parts of my experience were similar to other cases he has seen. That's fascinating to know...tell me more! I had also offered to send him a copy of my medical records while I was in the hospital (I have a copy to aid my memoir), and he's asked to see it to help him understand my case better. (I can't wait to hear his insights!) He queried me, as well, about the closest big city to where I live. Los Angeles, I told him. Ever heard of it? I think he inquired because he might ask me to get some tests. Is it too much to hope that it might be a fMRI, like I discussed in the article? I love the idea that I might be contributing something to science! I wanted to grow up to be a scientist, and this is the next best thing.

I'm afraid I may have come off sounding a bit like a fangirl in my response because of his groundbreaking work in a field I now feel passionate about. To me, he is a rock star of covert cognition research. Indeed, Dr. Owen plays guitar, and he used to be a member of a rock band called, You Jump First. Okay, I will, but I did urge him to write a popular science book about covert cognition eventually. To advance the science, you also have to increase knowledge of it for those potentially one-in-five patients with disorders of conscious who have covert cognition. You can't help them if no one even considers that they might be still "in there."

In every interview of Kate Bainbridge I've read, she's commented about how lucky she was that Dr. Owen scanned her and saw those sparks of consciousness as she reacted to pictures of her family. Dr. Owen was fortunate, too, because that discovery set him on his current career path. But luckiest of all are the covertly conscious who will someday be helped by Dr. Owen and his fellow researchers in the growing field of covert cognition research.

Someday, perhaps, the covertly aware won't be shoved into the Junk folder of humanity.

Friday, July 10, 2015

The Diving Bell and the Salmon


I'm currently reading, The Diving Bell and the Butterfly by Jean Dominique Bauby, in part because I'm preparing to write my own memoir. I have to admit that memoirs haven't been one of my favorite genres, though I have read a few. If I knew I was going to have a memoir-bait experience, I would've prepared better.

Like I did when I was a kid choosing subjects for a book report, I've naturally been picking up memoirs on subjects that I would've been interested in anyway. I don't care how popular Eat, Pray, Love was, I'm not reading that spiritual drivel.

At any rate, there's a reason why Mr. Bauby's book was an international bestseller. I'm enjoying it on a literary level, the way fiction has always drawn me into its web. In a recent chapter, he wrote about the way he integrated what was going on around him in the hospital into his own version of a coma-dream. The ICU was transformed into a surreal bar, his IVs a tube from which alcohol poured forth into his mouth.

That anecdote powerfully reminded me of the "Hi-C" being fed into my mouth through a tube in my coma-dream. In fact, the "tube" was actually a citrus-flavored swab being used to clean my teeth. I couldn't understand why Keith kept telling me not to bite down. How else was I supposed to suck on the tube? Mr. Bauby also likened his recurring dream segments to a soap opera, just as I have. When you're in a coma, you have a lot of time to kill.

Recently, Joella posted a video on my Facebook timeline from a bubbly and intelligent 18 year old with cystic fibrosis named Claire Wineland. It's titled, "What It's Like To Be In A Coma." Actually, that isn't quite correct. It's really about what it was like to be in her coma, which was medically induced after a surgical procedure went awry. But her experience does share a number of elements with mine, as well as Mr. Bauby's and other accounts by people who have posted their coma experiences online. Her brain also transformed what was going on around her into dream-logic versions in her coma-dream. Like me, she interacted with people in the real world, engaging in conversations only she could hear. She dreamed of Alaska because her doctors packed her with ice, like a soda in a cooler, to lower her temperature. My doctors did the same to me. They left me uncovered in a frigid room, as well, since they thought I was incapable of feeling chilled. This is why not one but two recurring threads of my coma-dream involved ice cream.

When you read medical information about comas, it always talks about the coma victims losing awareness of their surroundings. Yet, brain trauma organizations advise the loved ones of those with disorders of consciousness to talk to the patients because of the many accounts from recovered survivors who have reported that they heard what was being spoken to them. What gives?

Well, in science you can't credit anecdotal evidence.The brain trauma organizations are giving advice based on experience, but it's still not empirical, scientifically confirmed, evidence. Furthermore, the official sources are citing what has always been accepted knowledge and practice. Doctors on the community hospital frontlines play the odds, which state that people in my situation are most often basket cases. Just as my dermatomyositis was pooh-poohed for some time because it was a rare zebra of a disease, my chances of recovery from the strokes and coma were discounted when they saw all those white spots on my MRI and I remained unable to respond. Doctors don't want to give false hope to loved ones, so in some instances, they instead spread false despair.

Ah, but there is plenty of empirical evidence of covert cognition, you say. Isn't that what you've been going on about since the beginning of your recovery blog? What about the scores of peer-reviewed studies published by Dr. Adrian Owen and the Owen lab?

Though the Owen lab is far from alone in the growing field of covert cognition research, these findings have yet to penetrate to the level of the average neurological practitioner. Indeed, my neurologist hadn't even heard of their work. I'm also afraid that the medical establishment hasn't fully absorbed the finding of the Owen lab, Dr. Owen's earlier work at Cambridge University, and Steven Laureys' Coma Science Group in Belgium. The finding fall too far outside of long-accepted knowledge and practice.

Think about how long it took before H. Pylori was accepted as the cause of ulcers. It was discovered by Australian doctors in 1982 and later confirmed by British researchers. Perhaps, when it comes to covert cognition research, American doctors are still scratching their head over those crazy finding by British, Canadian, and Belgian ferners. Vegetables communicating by playing tennis in their heads? Ridiculous! Dead salmon placed in an fMRI machine show activity, too [that's a real argument I've read based on a test anomaly]. But could even live salmon repeatedly and correctly answer biographical questions, or anything at all?

Tuesday, June 16, 2015

Locked-in hope


Tooling around the Owen Lab's website, I learned that Dr. Adrian Owen and his colleagues at the Brain and Mind Institute have developed a portable device that allows communication with people suffering from complete locked-in syndrome. Here's the NewScientist story: Portable mind-reader gives voice to locked-in people.

I didn't suffer from locked-in syndrome, but I think Kate Bainbridge did at one point. She refers to being aware, yet unable to communicate. I, on the other hand, was only semi-conscious. That's why stimuli from around me only leaked into my coma-dream, as I call my near-death experience.

Still, this is an exciting advance. The Owen Lab is also working on ways to detect covert cognition with EEGs. I received an EEG, though all it could detect was that I wasn't brain dead. You may have surmised this by the fact that I'm writing this. At any rate, I wish them luck in their further endeavors as they seek to help people like Kate Bainbridge and me.

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Coma Girl

Coma Girl

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.