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Brain Wreck: A patient's unrelenting journey to save her mind and restore her spirit Paperback – November 16, 2012
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About the Author
Becky Dennis is a writer, photographer and marketing/business development executive. She's on the board of directors for a global non-profit patient advocacy group. Please visit her at www.bdbrainwreck.com.
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The author is nothing but persistent, and chronicles the journey from doctor to doctor and diagnosis to diagnosis. The author is pretty blunt in her assessment of the medical community (not that you can really blame her), but it is a testament to the difficulty in trying to pinpoint various conditions as well as never giving up in trying to figure out what was wrong.
I work from home, made a completely normal call to a business associate at 4:00 pm on a Tuesday, and my next conscious memory was hearing people pounding on my front door at 3:00 pm Friday. I was in bed, undressed and had no idea what was happening. I recognized a friend's voice and was roused enough to make my way to the door where I found my friend and two neighbors. Clients had begun to call my office because I had missed appointments and not been answering any phone calls and emails. My office called my friend...thank goodness, because I live alone. My friend helped me get dressed (I was trying to wear a towel), and drove me to the emergency room. By the time we got there, I couldn't speak. I could make vocalizations, but almost everything sounded like gibberish. My kids drove home, and we were told immediately this was not a stroke, and it most certainly, was some type of bacterial infection. Tests bore this out, but instead of improving with fluids and antibiotics as we all expected, I continued to get worse. I couldn't tell the doctor my son's name, couldn't follow his finger moving in front of my face, and pretty much was alternately a wild woman who was crying and trying to remove my clothes, and something a bit calmer that almost resembled the real me. These crazy swings happened with no warning and within seconds.
They transferred me to a bigger hospital where there was a neurology department. I was strapped down tight in the ambulance and remembered screaming the entire way. I didn't improve there either. The bottom line is encephalopathy is simply a condition where your brain swells to a point you can become completely senseless. It is caused by infection and the variations of infections which can cause this is large. The first thing is to determine what caused the infection and treat it. It seems the length of time your brain requires to recover is also quite varied. Becky's comeback was extremely gradual. Mine was less so, although losing about two weeks of your life is a little scary. I was so lucky to eventually make a total recovery. For about ten days, my kids had actually been thinking they would need to place me in some type of institutional care. My fear, when I would have a few lucid moments, and the emphasis here is on the word "few", I worried I would never be able to write creatively again. I did have to relearn to physically write, to type, to do simple tasks.
The most frightening thing to me was how rapidly this hit me. I had not been sick or even feeling oddly. One minute I was a sane, functioning adult and the next I was comatose upstairs in my bed and never knowing or remembering how I got there and anything that transpired for three days and nights. My friend gave my cats food and water before we left for the ER. I think they had lost a few pounds. Only one of them knows how to drink from the toilet.
If you ever have a relative or friend who experiences any kind of disorientation, including a problem speaking...even for a minute, get them to an emergency room. It could be a stroke, as my friends thought was happening to me. That, of course, is a serious situation, but it could also be a swelling of the brain. Both can be deadly if they are severe enough and left untreated. I was very lucky. So was Becky, considering how long it took her to be diagnosed.
You feel her frustration and anger with the medical community as she is repeatedly misdiagnosed; laugh at the back-and-forth banter with her husband, Gary, or her sister, Angela (which is real -- I've witnessed it many times over the years); and cry with her as she struggles to complete the most mundane tasks. All along, however, the real Becky shines through: she's smart, funny, tough, sarcastic, inquisitive, creative, and detailed and, above all, incredibly persistent.
The strength, determination, courage, and humor that Becky and her family demonstrated throughout her ordeal -- and, indeed, continue to demonstrate today -- are laid out incredibly well in this book and make it a must-read.