Monday, December 22, 2014

Putting my best foot forward

This photo was taken last Sunday during our weekly rehab walk. Until recently, I couldn't ascend or descent stairs, even a short flight like this one. I still need a railing, though.

From the beginning of my rehabilitation, much of my physical therapy has come from simply trying to do things I always took for granted. When I started to grow sprouts, for instance, I found it difficult to do without carrying the sprouts and the water containers to sink with both hands, so I started to walking the few feet to the sink without my walker or cane. Now I do it all the time, although I look a bit like Frankenstein testing out his newly grafted legs when I do it. My right leg continues to be weaker than my left leg, though I'm strongly right-handed (and right-legged).

According to my neurologist, this weakness is due to my six-week coma, not the multiple strokes on both sides of my brain. It could've been caused by something as simple as the way I was a lying during the coma. At any rate, my right leg has gotten quite a bit stronger, though it still feels slightly numb. And when I walk on it unaided, I come down on it heavily. Though I walk much more smoothly with a cane, I suspect that the short stints of walking unsupported has helped my right leg. When I was in the nursing home, the leg felt like it was a solid block of ice. And yet, I was also experiencing extremely painful spasms in the foot. I started asking my loved ones to massage the foot, which usually helped but sometimes made the spasms worse. The foot was both sensitive and numb. I was given some medicines to reduce the spasms and pain. I was already taking one of them, and the second drug may have helped a little. Eventually, I bought some vibrating slippers, and they eased the pain quite a bit. My neurologist thinks this may be because they distracted the nerves.

I still use the slippers now, though less and less frequently. Mostly, I'm using them for comfort when I'm sleeping because they're soothing. But I don't really need them anymore. The spasms are finally gone.

Tuesday, December 16, 2014

Voiceless

The pillows by my side and under my head were used to improve my comfort and to prop me up while I was eating because I wasn't yet strong enough to sit up or raise my head on my own.

My illness and recovery have given me a kind of sneak-preview of what it's like to be elderly. Perhaps I had it a little easier because my caretakers at the nursing home knew that I was completely aware. In fact, I was a bit of a pain in the ass, especially at first, since I knew what I needed to make myself comfortable, though I had trouble communicating that thanks to the tracheostomy tube in my throat. I even had difficulty telling my caretakers that I wanted a pencil and paper so I could write down my wishes. That was difficult enough once I got them, since I didn't have good control of my hands after the coma. To write posts on Friends of the Mountain Dulcimer using the Kindle Fire Keith bought me to use in the nursing home, I had to cradle the stylus in my hand like I had severe arthritis,

The certified nursing assistants (CNAs) had an especially difficult time in my room because there was another patient about my age who also couldn't speak due to a trach. I don't know Vilma's story, but I was told that she had a similar experience to mine, including the coma and seemingly miraculous recovery. Apparently, she and I were among the top three recovery stars in the nursing home. Vilma was diabetic, so I speculated that she might have gone into a diabetic coma. She wasn't paralyzed like she would've been if she had a clot-caused stroke. My strokes were caused by my plummeting blood pressure due to septic shock, and the watershed brain damage I incurred didn't cause lasting disability. At any rate, Vilma was apparently experiencing a lot of pain, but she was having trouble communicating what she needed to make her comfortable, just as I was.

Country Villa Sheraton was a pretty good nursing home, but the CNAs were terribly overstretched. They would get busy in other rooms and wouldn't be able to get to you quickly after you pressed the call button. That was a problem if you needed a bedpan right away. It got to be such an issue that I finally requested a diaper. I would often have no choice but to use it when a CNA couldn't get to me in time. I can't begin to describe how humiliating it is to have your diaper changed when you're an adult! My long coma and catheterization affected my ability to control my bladder functions, so I often didn't have much warning.

Sometimes, Vilma and I would silently team up to help each other. The CNAs didn't always remember to place the call button where you could reach it when changing bed linens or turning you over to prevent bedsores. When that happened to Vilma, which was fairly often--her call button was farther away from the bed than mine--she would start banging on the bed rail if she needed help. I would take up the clanging because my bed was closer to the door. She returned the favor for me a few times, as well.

I have irritable bowel syndrome (IBS). IBS can cause excruciating cramps, so it's painful in the best situations. Since I had reduced bowel control, as well, probably due to muscle weakness, the slowness of the response to my calls was often painful as well as embarrassing. And even when I did manage to get a bedpan in time, I would frequently be forced to wait a long time to get it removed again. One CNA left me in tears when he took more than half an hour to take the bed pan away. That is an extremely uncomfortable position to be in for that long. Talk about a pain in the ass! I finally got the attention of a nurse and begged her to get me some help. When the CNA was summoned back, he complained that he was busy. "She's been on that for half an hour!" the nurse admonished. I felt so incredibly helpless until the nurse intervened. I'm getting angry thinking about it even now!

I don't have to imagine what elderly people in nursing homes go through when they lose the ability to talk due to strokes or Alzheimer's disease. But even when I couldn't talk, I never lost the ability to complain. That came as no surprise to the people who know me. ;-)

Monday, December 8, 2014

Service without a smile

No, this isn't what I practically inhaled for breakfast this morning. The nursing home ground the hamburger back into ground beef (like a sloppy joe without the sauce to bind it) at first--after they finally allowed me to eat--to prevent me from choking or literally inhaling my food, due to my tracheostomy. It was incredibly difficult to eat that way!

Having a mobility disorder has its perks. People are unusually nice to you, saying hi as you pass and rushing to open doors for you. It also has plenty of disadvantages. All in all, I wouldn't recommend it. One service for the disabled that's both good and bad is Access Paratransit. Until I needed it, I never realized how ubiquitous the Access vans were on the road. Now I see them everywhere. It's an invaluable service to the disabled, and it's quite cheap as well--only $2.75 each way, with no tipping required. They also transport the elderly, which is a real boon to seniors who can no longer drive. Recently, the van I was riding in dropped off a woman visiting her husband at Country Villa Sheraton, the nursing home where I convalesced after my coma. It turns out that the driver has a mother in a different County Villa rehabilitation facility. As he drove me home, we fell into a conversation. I told him about my illness and explained about my research into covert cognition for my article, "Covert Cognition: My So-Called Near-Death Experience," which I submitted to Skeptical Inquirer a few weeks ago. I was pleasantly surprised that he didn't say my recovery was a miracle. Perhaps that was because I mentioned I'm a skeptic. Or maybe he's secular himself. At any rate, I thoroughly enjoyed the conversation.

Not all my experiences with Access have been so pleasant, however. The drivers are often late, for one thing. You have to add a lot of extra time if you're going to an appointment. I once got into a conversation with someone waiting for a late Access van. She vented her frustration as we commiserated, emphasis on the misery. Been there, ranted that. I've had to argue with drivers to get them to take me to the correct side of the building when I was being dropped off for my physical therapy appointments. They would often show up on that side, too, when they arrived to pick me up and I would miss the pick up. Keith has had to leave work to pick me up because of this a few times. A couple of times I was able to get them to send another van. They actually had the nerve to send me a warning letter about how many times I had missed pickups! Fortunately, they expunged the incidents from my record after I explained what happened. I could've been suspended from the service if that happened too many times.

The Access customer service representatives are government employees. Some of them have been quite nice, but others have been stereotypical government workers, surly, uncaring, and unhelpful. Today, for instance, they had me cursing up a storm (after I hung up).

I had to wake up a half-hour early to make a pickup at the ungodly hour of 6:20. They were picking me up for my annual Access re-evaluation. I had to scarf down my breakfast to the point of gagging to be ready on time. What's worse, I probably wouldn't even have had the evaluation again if the person doing my first one hadn't screwed it up. I explained to her about my Legionnaire's disease, which led to my six-week coma and caused multiple strokes on both sides of my brain. I also provided a sheet that showed my diagnoses. I say diagnoses because the list is now so long that it extends to a second page. The sheet I provided was that was time shorter, but it mentioned that I also had (at the time) high blood pressure and cholesterol, which were caused by the prednisone I've been taking to control my dermatomyositis. She put down that the reasons I was applying for Access were dermatomyositis, high blood pressure, and high cholesterol. There was nothing about the coma and multiple strokes, And instead of listing Legionnaires disease, she wrote that I had a history of severe pneumonia. Legionnaires disease is a severe pneumonia, so that's not entirely wrong, but Legionnaires disease is a different animal than simple pneumonia. Most severe pneumonias don't cause septic shock, which is what triggered the coma and strokes in the first place. Because of the slipshod job on my application, I was given a temporary approval instead of a permanent one. Now, I admit that it's my fault for not complaining at the time. I meant to, but it's usually such a pain to deal with their customer service, and I kept putting it off.

So, fast-forward to today. I got the callback, alerting me to the arrival of the van. I rushed outside into the chill of the morning, but there was no van there. Keith walked to the curb, but there no van to be seen in front of the neighboring houses, either. I girded my loins and called Access customer service. The person I talked to wasn't one of the nice ones. As I was on the hold, an Access van sped by. When the representative came back online, she said that the driver had reported that no one was at the pickup address and had left. I said that he must've gone to the wrong address because we were outside a minute after the callback. She repeated our address. But we were outside the whole time, I said, a little too loudly, but not quite shouting. She repeated my address, where the driver had supposedly been. Yes, he had the right address, but he went to the wrong one. We were right outside, I reiterated. I was practically spitting nails I was so angry! I did my best to lower my voice and asked if they could call him to come back. Several minutes on hold later, the answer came...nope. I called the regular reservation line, and no, I couldn't get a regular pickup, since Downtown LA is farther from Van Nuys than they usually will take you. They recommended that I call the customer service number again. I got the same surly and unhelpful representative. No, she said, we can't send another van. And, no, she doesn't know when my appointment was set. I could've had someone else drive me downtown, but Keith had to get to work, and Joella was still asleep, having just flown back home the day before after attending her granddaughter's wedding (and boy were her arms tired). She would've done it if I had asked, but I didn't want to.

So, now I'm lying here writing this post instead of waiting a few tedious hours at Access' cavernous evaluation center, with a room for a bus and a few Access vehicles (to test for the ability to board). Last night I printed out my health summary with annotations to help them understand the most critical ones listed. I'm hoping that I won't have to do this next year, but I have no confidence in the quality of the evaluators. In the meantime, I'll have call customer service to make a new appointment. The first time I called to arrange for the pickup, I tried to get a later pickup time. The surly representative (I'm not sure if it was the same one) said that it could be even earlier than 6:20. Oy gevalt!

Thursday, December 4, 2014

Standing on my own two feet


I remember how hard it was to stand while moving rings across a shower curtain-like bar during physical therapy in the nursing home. One of the most useful types of physical therapy I've received, however, was the balance exercises I was taught at my behest. I have some stroke damage that may have affected my balance, the only noticeable manifestation of the multiple strokes I experienced on both sides of my brain. According to my neurologist, my other physical problems are due to the deconditioning from my six weeks of coma. She told me that I should eventually get all my physical capabilities back, but I was getting frustrated because my wobbly walking was holding my progress back. I now have more walking endurance than before my coma and strokes, so I reasoned that more physical therapy to improve my walking wasn't the solution, and it turns out that I was right.

At any rate, during our trip to Long Beach's Aquarium of the Pacific Monday, I found myself unconsciously standing without any support to shoot photos. It was as if I had been standing my entire life. ;-) And I was standing steady enough to get good shots, too. Getting that balance therapy was one of the best decisions I ever made. This goes to show that you really do have to take charge of your own healthcare.

Here are some more photos we took at the aquarium, including many others of me standing unaided: Tumblr blog.

Tuesday, December 2, 2014

Racing Penguins

Yesterday, at the Aquarium of the Pacific. I have a cameo, next to my rollator.

Sunday, November 30, 2014

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? ;-)

Wednesday, November 26, 2014

Monday, November 24, 2014

I get by with a little help from my friends


During my recovery, my friends on Friends of the Mountain Dulcimer (FOTMD) and Facebook have been cheering me on through my many ups and downs. I can't tell you how pleased I am that my perseverance and emotional strength throughout these struggles has been inspirational for so many of them, but I wouldn't have been able to get through this without their encouraging posts and innumerable virtual hugs. Their support has been just as inspirational to me.


Along the way, I've left a trail of cyberspace bread crumbs worthy of Hansel and Gretel. It started with a blog Keith posted on FOTMD after I fell into a deep coma: Geekling Status Update, when it looked like I was unlikely to survive. Next came the thread that Carrie Barnes started to cheer me up in the nursing home after, against all odds, I awoke from the coma with all my mental faculties intact: Greeting for Geekling. (Note: The most interesting parts are near the beginning, when I was was taking my first steps and finally being allowed to eat food.) This blog contains my first posts after the awakening, when I could barely hold the stylus in my hand to peck out the words one letter at a time. I find the countless typos rather amusing, since I'm such a perfectionist.


As my strength grew, I started my own thread that became a blog of my continuing recovery: Gadding about with GeeklingThe thread features many photos Keith took on our garden walks to improve my walking. At first, a four-wheeled rollator was too challenging for me. Later, when I was stable enough to keep the rollator from rolling away from me, I graduated from the two-wheeled walker I had been using, which allowed me to walk much farther. The pictures are another kind of log of my physical progress.


The prednisone I was taking for my autoimmune disease, dermatomyositis (DM), weakened my immune system and caused me to come down with Legionnaires' disease, which is what made me to fall into the coma in the first place. But when I wrote this blog about how I diagnosed my DM via Dr. Google, prednisone was still a godsend, since I had already sustained a great deal of muscle damage from the DM: I won the lottery, but what I got was no prize. Fortunately, my DM went into remission while I was in the coma. I'm stepping down from prednisone now, and I will soon be able to discontinue it completely. Besides the coma, prednisone has also given me severe osteoporosis. Before the advent of prednisone, DM was often fatal, but talk about double-edged swords!

My rehab walk at the Descanso Gardens


Last Sunday, we went to the Descanso Gardens' new Oak Woodland section for our weekly rehab walk. As you can see, it has a number of steep sections, but there are no benches where you can rest. It's new, and maybe they depend on the donations of members to pay for their benches. Perhaps the next time we go, we'll bring the big rollator with a seat. I prefer the small, three-wheeled rollator, which is lighter and more maneuverable, but the seat on the bigger one does come in handy sometimes. There are some additional pictures Keith took on my Tumblr blog.

Friday, November 21, 2014

A journey of a thousand miles...

I flopped over and hit my head the first time I tried sitting up unsupported long enough to be transported into a wheelchair. I was in a nursing home, recovering from my 6-week coma. I couldn't stand even when I was being held up. Physical therapists put me in a device that resembled a giant vertical sandwich press. My legs were the sandwich. The pressure was supposed to aid my standing. It didn't. They kept increasing the pressure until I yelled--UNCLE! Still, I couldn't stand. It looked hopeless, but eventually I was able to stand with a special walker that braced my arms (see above). At first, I had to throw my arms at the arm braces and hope I could catch it. Before long, I could very slightly edge my feet forward. They called those steps. Soon, I was able to take a couple of actual stiff, Frankenstein-like steps.

John Silva was the main therapist who helped me to walk again, Another physical therapist scoffed that I wasn't really walking because he was holding me up as I walked. Later, after I was walking without support, other therapists thought he was pushing me too fast. But it worked. He was using the techniques he learned at Rancho Los Amigos National Rehabilitation Center, which he said was nationally recognized for its innovative approaches, and for that I'm eternally grateful. Without his help, I wouldn't have made it home in time to save my Kaiser health insurance, which would've been canceled if I had stayed in the nursing home past last November 1st. If they made a movie about him, he would be the maverick defying his hidebound colleagues to save a patient without a chance.

This is a picture taken with John the first time I walked outside the nursing home, which was his method for helping patients progress. That made one of the therapists practically roll her eyes. By the way, he wasn't holding onto me, just grasping a belt around my waist, which was a required safety measure.
And here is the video I made using pictures my boyfriend Keith took on our garden walks, which I started at the suggestion of the outpatient physical therapist I saw when I returned home, Alan Lee. The walks have greatly improved my walking, so I owe a debt of gratitude to him, as well. The video features my playing of "Morning Has Broken" on a vintage Folk Roots mountain dulcimer as its soundtrack. I posted it on the day after my birthday, both to celebrate my rebirth after nearly dying and to thank my dulcimer-playing friends for their emotional support through my difficult recovery.



Thursday, November 20, 2014

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.

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

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.