Music Therapy: Revealing Awareness and Awakening It in Doctors Too

Miracle Girl: Music Therapy: Revealing Awareness and Awakening It in Doctors Too

Music therapy reveals misdiagnosed 'vegetative' patients, reaching the supposedly unreachable. And it could stimulate improved awareness. 

But what can raise the consciousness of their blindfolded doctors? Can it teach a lesson to those that wrote them off as hopeless?

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.

Vegetative Mock Trial: An All-Too-Real Life and Death Scenario

Miracle Girl: Vegetative Mock Trial: An All-Too-Real Life and Death Scenario

Should a vegetative wife have her feeding tube removed? That was the question posed by a student mock trial. Yet the issues at stake are far from moot.

Would I have rather have been taken off life support and allowed to die? That's what the student asked me.

Seriously!???

SfMCR*: After the Awakening

This is the only photo taken of me at All Saints Healthcare. It was snapped on the day of my transfer, five days before my awakening.

I awoke from a dream of man-eating office machinery right out of the Twilight Zone, only to learn that I had actually been re-enacting Sleeping Beauty. I've told the story of the first moments after my awakening before, but the rest of the day was almost as surreal.

A female doctor walked in to evaluate the state of my cognition. Since I couldn't talk, all she could do was give me a multiple choice quiz. Which of these is the current president: Bill Clinton, George W. Bush, or Barack Obama? This was my first inkling that brain damage was still suspected. I shook my head on the first two and nodded on the last. I made a mental note to make sure everyone could tell that I was completely there.

My mom had explained that my doctors had written me off as a basket case. "The nurses hinting that I should let them pull the plug," she added in her typical blunt manner. She also stated that I had been a quadriplegic. Though I could barely lift my arms and legs, I did have a slight amount of movement. This didn't make any sense to me. My spinal cord had obviously not been damaged. How could this be? This statement only added to my perplexity. [She still says this. I think she bases her conclusion on my lack of movement during my coma. As a hyperactive person, I had always fidgeted and moved while awake. Though I was covertly aware during my coma, I wasn't fully awake. If I had been conscious, but paralyzed, I would've been in a lock-in state, not vegetative.] 

Though I was sure I had no signs of brain damage, confusion reigned as I tried to make sense of the mish mash of the details that trickled out about my illness.

Soon, a priest appeared and told me, "God is good," as I've written about before. My mom, who is also an atheist, was trying to be polite when she allowed him to come to my side. I, in turn, acquiesced with a slight nod of my head when he as asked me if he could pray for me. It made me feel extremely uncomfortable. Thankfully, he soon left.

My mother was obviously excited at my awakening, but sometimes she talks so much that details can get buried in the mix. This only added to my confusion. I was already getting an inkling of what my loved ones had gone through, however. My mom told me there had been a constant vigil by my side, a fact which a nurse confirmed. Keith would be coming by after work, my mom informed me. I couldn't wait for him to get there. I knew he would be happy.

When Keith arrived, I could hear the joy and relief in his voice. I only wish I could've seen his expression; I'm extremely nearsighted and I didn't have my contacts or glasses. A vegetable has no need for corrective lenses. Keith vowed to bring my glasses to me the next day. Though I couldn't see fine details, I could make out the breadth of his smile.

He told me that all my friends on Friends of the Mountain Dulcimer were rooting for me, and there was a separate cheering section on Facebook. "I can't wait to tell everyone you're back. Completely back." The relief in his voice was obvious.

Meanwhile, I mugged like a silent movie actor, trying to seem as vibrant and aware as possible. I did my best to display my sense of humor, through exaggerated facial expressions, comically timed looks, and a few mouthed words, which were often misunderstood. I wanted everyone to know that I was still completely me. Given my limited comic palette, I was at a considerable disadvantage in this endeavor. My humor is usually verbal.

As I continued to overemphasize my thereness, I stayed so animated that I quickly became exhausted. Yet I kept it up, anyway. I had to make sure everyone knew my mind was undamaged. Keith clearly couldn't get over the fact that my mind was still clearly intact. He had heard all the same discouraging things from my doctors.

And all the time, I struggled to piece together the picture of what had happened. Had I been in a coma six months or six weeks? [I think the confusion stemmed from my mother rounding up to two months, while Keith referred to it as the more precise six weeks. My mind conflated the two.] Why were objects labeled as belonging to "All Saints," when I had spent my coma in the Kaiser Panorama City hospital? No one thought to inform me (because they already knew) that I had been transferred to a nursing home only five days before my awakening. [As I've referred to repeatedly, it was the very activity involved with that move which sparked my awakening.]

Eventually, Keith had to go home and scarf down a quick dinner, then catch a few hours sleep...as he'd been doing for the previous six weeks.

I felt all but dead, wrung out by my forced activity in my coma-weakened state. But I awoke the next morning. And the next morning. And the following morning as well.




*SfMCR stands for Scenes from My Coma Recovery. This post is part of a continuing series of vignettes from my recovery.

Another exciting (yes, exciting) neuroscience study about covert cognition

Damn those researchers at Western University's Brain and Mind Institute! After I wrote that they were trying to develop methods to detect covert cognition using EEG, they had to go and publish two papers showing some success. Here are the two new papers: First EEG study and Second EEG study. Also, here's the Owen Lab website again: The Owen Lab

My EEG during my coma showed, not surprisingly, that I still had brain activity. But what it couldn't show, at least using the usual methods, was that I was experiencing covert awareness. If my doctors had the techniques being developed by the Brain and Mind Institute at their disposal, they could've been providing me physical and cognitive therapy instead of telling my loved ones to give up hope for my full recovery. That's wonderful, you say? Sure, it's great for the current and future patients in my situation. But now the article I submitted to Skeptical Inquirer about my covert cognition is already out of date! I can't unsend that email submission, so what am I going to do? ;-)

Covert Cognition

A year and a half ago, during my six-week coma...

More than a year ago, taking my first steps at a nursing home...

A few months ago, walking at the Sepulveda Wildlife Preserve, on the way to a natural-bottomed section of the LA River...

  

While vacationing in Sicily, I came down with Legionnaires' disease, which is a (usually) rare form of severe pneumonia, though I've had the misfortune of catching it twice. In both instances, it was due to the immunosuppressive effects of medications I've been taking for an even rarer autoimmune disease called dermatomyositis (DM). I began getting sick in the waning days of our vacation, but I had written off my hacking cough as a nasty cold. Call it Mussolini’s Revenge. A few days after we got back, however, my boyfriend had to rush me to the emergency room. I was in such a mentally altered state that when he asked me why I hadn't turned on the air conditioner, I said that I liked the heat. It was 105, and I hate the heat.

The Legionaires' disease caused me to develop a severe case of septic shock. The sepsis made my blood pressure plummet, causing a series of strokes on both sides of my brain. I fell into a deep coma. When the doctors saw the stroke damage on my MRI they concluded that I was a hopeless vegetable. Indeed, they didn't even perform a Glasgow Coma Scale test on me, and it's just a low-tech behavioral check list. But I was still conscious. I was, as a British vegetative-state survivor, Kate Bainbridge, put it,"in there." I had what is known as covert cognition. When the doctors shined lights in my eyes looking for signs of consciousness, I was telling them grumpily, "Leave me alone. I'm trying to get back to sleep!" Unfortunately, I was snapping at them that in my coma-dream. They took my lack of response in the real world as confirmation that I was completely unaware.

My research has shown that there is increasing scientific evidence of covert cognition in as many as many as one in five people with disorders of consciousness. I was in a state of the art hospital. I think it's an outrage that more isn't done to evaluate and help those one in five patients that are "in there."

Kate Bainbridge was the first person pioneering researcher Dr. Adrian Owen scanned with Positron Emission Tomography. She was the one who made the "in there" comment, in a note to Dr. Owen. After her PET scan detected her covert cognition, she received therapy that eventually helped her awaken from her persistent vegetative state (PVS). My doctors said that any form or stimulation or physical therapy would be futile. I was fortunate enough to wake up on my own, anyway. Sadly, Kate is now severely disabled due to the nature of her brain damage, though her cognitive function is fully intact.

Six weeks later, I woke up from the coma. I was so deconditioned that I could barely lift my head. Through intensive physical therapy, I've made a great deal of progress, but I'm still not back to where I was before the coma. And I continue to experience weakness in my arms and legs, which were damaged by my DM. It has been a hard road back, but it has been made harder by the six weeks of complete immobility. My strokes cause little physical damage. Almost all of my problems were due to the coma itself. If I had received medically supervised stimulation, I could've had a shorter recovery. I might even have woken up sooner. That's what happened with Kate after Dr. Owen discovered that she was still aware.

Dr. Owen has communicated with a number of other patients with disorders of consciousness using functional magnetic resonance machines (fMRI). FMRI machines are expensive and aren't mobile, so he's devising ways to use electroencephalograms (EEGs) to detect covert cognition. In fact, they recently published a paper that showed some success in this endeavor. Perhaps they'll succeed in getting patients to communicate with EEGs, as well. I was given an EEG after my strokes. I wouldn't be able to write this if I were brain dead (except in the morning), so you won't be surprised to learn that they detected brain activity. Unfortunately, the EEG, at least as it's now performed, couldn't detect that I was experiencing a rich "coma-dream," as I call it.

The coma-dream was my skeptic version of a near-death experience. Instead of seeing spirits, I saw miniature zoo animals having a tea party--like poker-playing dogs, only with tiny china cups. The elephant held the teapot with its trunk. The revolving segments of my coma-dream were often interrupted by the things my loved ones were saying, reading, or playing for me to stimulate my recovering brain. The doctors, however, continued to dismiss the signs of my increasing awareness.

I worry, as Kate Bainbridge does, that people are having their plugs pulled because doctors are telling their loved one, as mine did, to give up all hope for their full recovery. How many of them are in there too?

Here is a link to Western University's website about their Brain and Mind Institute, which is headed by Dr. Owen: The Owen Lab. The website has a huge amount of information about the lab team's covert cognition experiments. There are also links to videos about Kate's story. It's well worth checking out.