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Speak Up
The Speak Up blog features essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
Wednesday, February 25, 2015

BY CHRISTINE MORETTI

 

Three years ago, on Sunday, April 15, 2012, my life changed forever. That was the day my older sister, Patti, died from sepsis due to a bowel blockage she never knew she had. She was 61.

 

I will never forget that phone call. At first, I couldn’t understand what my niece, her daughter, was saying as she yelled into the phone. When the words finally registered, I nearly fainted. The floor came up to meet me as I screamed in disbelief.

 

The following week was horrific. I returned to my childhood town of Harrisburg, PA, along with my twin brother, Greg, to help my niece and nephew arrange my sister’s funeral and comfort my 89-year-old father, who was still recovering from the death of my older brother from liver disease a few years earlier.

 

I was in an absolute fog, totally numb. After the funeral, back home in Philadelphia, I tried to pull myself together for work the next day. I remember waking up that Monday morning with a terrible headache, feeling completely unprepared to face the day. But I had already been out for a week, so I put one foot in front of the other and went back to the office. In hindsight, I realized I should have gone straight to my doctor. But at the time, I just chalked my pounding headache up to grief and exhaustion.

 

The headache persisted until the night, 13 days later, I tried to climb into our SUV and couldn’t lift my leg high enough. I landed lopsided in the seat and realized I couldn’t feel my leg from the waist down. I sat there, numb and terrified, thinking it couldn’t be a stroke—a stroke affects the entire half of a person’s body, not just a portion. I waved my left arm to prove I was OK.

 

My sons and husband dragged me out of the SUV and up the driveway to the house. I refused to sit down, afraid that I’d never get up again. After about 15 minutes, sensation began returning to my left leg. Then a tightness grabbed my left calf, so strong and painful that I was forced to sit down. Then it traveled up my left side, to my waist, my heart, the base of my skull, and up to the top of my head. I’ve never felt anything like it before. But rather than go to the emergency room, I tried to “be strong” and forget about it.

 

I scheduled an appointment to see an orthopedic doctor a few weeks later, thinking the problem with my leg was related to my sciatic nerve, which had acted up before. After hearing what happened, my doctor was incredulous I had not gone to the ER. He was convinced I’d had a stroke, and wouldn’t let me leave his office until he arranged for an immediate visit with my primary physician.

 

My primary care doctor arranged a CAT scan and cardiac workup at Thomas Jefferson University Hospital in Philadelphia. The day after the scan, my doctor called me personally. I hadn’t had a stroke—I had a brain tumor, a parasagittal meningioma, to be exact, which was sitting on the motor cortex, hence the temporary paralysis in my leg. The “episode,” as I refer to it now, was a seizure. I was placed on anti-seizure drugs at my first appointment with my new neurologist. An operation was deemed too risky since the tumor was entangled with blood vessels in the brain. Instead, my doctor would monitor the tumor and start radiation if it appeared to be growing.

 

I believe that if it weren’t for the profound grief that followed my sister’s death, I might never have experienced the stress that prompted these symptoms and forced me to discover my brain tumor. I think it was her way of saying goodbye, since we never had that chance.

 

Since the diagnosis, I have completely changed my life. I eat as healthfully as possible, choosing organic produce and avoiding processed foods and foods with added sugar. I work fewer hours each week and take time to enjoy the small things. I make sure to spend lots of quality time with those I love. I want to be here to see my children’s lives unfold, and hopefully have some grandkids along the way.

 

To the shock and amazement of my neuro-oncologist, my tumor has shrunk on its own, which is highly unusual with this type of tumor.

 

I would be lying if I said that having this alien invader in my head doesn’t cause me worry and stress, but it has made me even stronger and more determined. When Greg and I were born three months prematurely, we were baptized and given last rites, because our parents didn’t think we’d live. That was almost 60 years ago.

 

I came into this world fighting, and I’m still fighting. This diagnosis is not going to beat me. I am a survivor!


Monday, February 23, 2015

My wife and I are 79 years old. She has had Alzheimer's disease for about 12 years. She is now in advanced late stage, and longer knows me or speaks. I write poetry about her and the disease to express my feelings; enclosed is one of my favorites.

 

Richard W. Graham

San Antonio, TX

 

Ambiguity

 

years passed

dementia spun its web

sticky plaques

and tangles

strangled brain 

neurons

until finally

absent but present

gone but not gone

physically here

mentally departed

she is alive

and with me

the person I knew

is dead

I grieve

no closure


Friday, December 19, 2014

I would like to see Neurology Now share information about encephalitis and meningitis. There are so many people, including professionals, who are not familiar with these conditions or their effects.

 

In 2012, while working on the computer network for our county school system, I developed an unusual severe migraine-type pain on the left side of my head. A family doctor initially diagnosed it as meningitis, but because I could turn my neck with no neck pain, he changed his mind. That night the pain increased so I was taken to a local hospital. After five hours and a CT scan, I was sent home with a diagnosis of a sinus infection.

 

Over the next few days, the pain continued to get more severe, and I began to fall asleep more often. I decided it was not safe to drive. On the fourth day I was taken to another local hospital and given another CT scan and a spinal tap. Six or more hours later I was sent home with no actual diagnosis. At this point, my memory began to suffer, and the pain continued to increase.

 

The night of the fifth day, I began to scream and cry over the pain. My wonderful wife and mother transported me in the middle of the night to another hospital. Four hours later, after an MRI and spinal tap, I was diagnosed with encephalitis.

 

At this point, I could no longer identify my nine and 15-year-old children. My wife told me that when our nine-year-old son sat beside me at the hospital, I looked over at him and asked him how work was going! I had no idea who he was and couldn’t even identify his age. After ten days and many hours of treatment, I was able to return home.

 

One year later I started to have a growing pain on the left side of the head again. After a few weeks of increasing pain, I went back to a local hospital. One doctor said I had a reoccurrence of encephalitis and began treatment. But the next day, a different doctor said that once you have encephalitis, you cannot have it again. I told the doctor that they needed to get together and discuss this.

 

At that point, a neurologist stepped in. After two MRIs I was diagnosed with encephalomalacia. I was very grateful for the diagnosis.

 

At this point, I feel very satisfied that I have received the best care possible, and my recovery is continuing. My long-term memory was never lost, but my short-term memory is gradually improving.  I am also able to communicate with a great group of people on the Internet who have been dealing with this type of brain infection. It seems to be misdiagnosed frequently because it is so uncommon. This affects the friends and families of people who are suffering as much as it does the person with the condition.

 

James D. Elliott

Newton, NC

 

THE EDITOR RESPONDS: Thank you for sharing your story, James. Look for more coverage of rare and misdiagnosed conditions in future issues of Neurology Today.


Monday, December 08, 2014

I regularly read Neurology Now and I have gained much insight and knowledge from each issue. In the October/November 2014, the article “The Keys to Safety” deals with how neurological conditions affect driving.  I was very disappointed to see that the article completely omitted reference to narcolepsy. 

 

In 2002, I started having blackouts while driving and was forced to take public transportation back and forth to work.  After many tests and several doctors, I found a great neurologist that diagnosed my condition as narcolepsy.  I started taking Provigil (modafinil) and my blackouts stopped. In the past eight years, I have not had any further blackouts.

 

I believe that narcolepsy is an under-diagnosed condition, and I believe it may be related to sleep apnea, which I have had for more than 15 years.  Please expand your articles to include all the relevant conditions associated with a topic.

 

Wayne Kolbeck 

Boynton Beach, FL

 

THE EDITOR RESPONDS: Thank you for your comments, Wayne. We're sorry you were disappointed by the omission of narcolepsy from the article. Look for more coverage of sleep disorders in future issues of Neurology Now.


Monday, October 13, 2014

At 21, I thought I had the world at my fingertips. I was confident as I flitted through the streets of Paris, my new home, with visions of my future in fashion whirling around my head. I never dreamed that it would come crashing down around me. Cluster headaches – it’s a very unassuming name for a very vicious ailment.

 

            Those who suffer from cluster headaches wince at the mere mention of the words, while loved ones who can only watch helplessly try to understand. The remaining majority of people cannot begin to comprehend what we unfortunate few endure. There is information out there, if you know where to look, but how many of us really research every illness that plagues our family and friends?

 

I want to give a glimpse into my world because, more than anything, people who experience cluster headaches want to know that someone out there understands.

 

            I am no stranger to pain. Half of my childhood was spent sitting on the sidelines of PE class with a cast or a bandage on one part of my body or another, until I learned how to really injure myself in my sport of choice – equestrian. I earned myself three months in physical therapy after a bad accident, not to mention years of chronic sinusitis, which tested the limits of my pain threshold. But my strong will – what some might call stubbornness – never let me give in, and with the cockiness that comes with adolescent delusions of invincibility, I continued to live my life with nothing more than a slight grimace when no one was looking. 

 

Last year, however, when I first felt the searing pain and the pressure behind my swollen and drooping right eye, I knew this was different. For the first time, I felt helpless and completely consumed by the pain.

 

            When a doctor first diagnosed me with cluster headaches, I was relieved. I’d experienced weeks of pain that brought me to tears as I screamed and pulled my hair out, imagining how I would look with a shaved head after the doctors removed the tumors that I was sure were causing this inferno. Yet this diagnosis sounded so harmless. Headaches that come and go in cycles? I’ve dealt with worse, I thought.

 

When I got home, I immediately scoured the Internet for any information I could find about the condition. In an instant, my relief evaporated: “commonly referred to as ‘suicide headaches,’” “thought to be the worst pain known to man,” “pain often compared to natural childbirth and amputation without anesthesia,” “can become chronic,” “no known cause,” “no definite treatment.”

 

Quite simply, the name is deceiving. Most people hear “migraine” and they understand the severity of the condition. But even after I experienced this pain – pain worse than I had ever felt – the term “cluster headaches” made me think it was just another headache. Now, after one year and three cycles, the name has a new force and a new meaning to me. But looking back on that first day, I realize that as much as I want others to understand, they, too, need to be informed first.

 

            I had just landed my first job in fashion PR in Paris and was preparing for Men’s Fashion Week when my second cycle hit. One morning I woke up with that completely unique pain behind my eye and I knew that I was in for a few rough weeks. The attacks were coming almost nonstop, lasting nearly two hours each with only about half an hour of relief in between. The pain came with such intensity that I don’t know how I managed to work those 10 stressful hours each day.

 

I grew more drained with each passing day, anticipating the few precious hours when I could expect relief. I was always anxious and fearful of the next big hit. I was not sleeping and could barely eat. I was getting confused and having trouble focusing, making mistakes that I would normally never make. There were times when I could barely even talk. My only saving grace was the fact that in the fashion industry, it’s acceptable to wear big sunglasses at all times, so I could disguise the fact that my right eye was swollen, drooping, red, and watering.

 

Pills, injections, numerous visits to neurologists – nothing could put an end to my misery. Then, five weeks later, the attacks were gone as suddenly as they had appeared.

 

            Four months later, the demon has returned, and so far I have endured three months of non-stop pain. With each new cycle a new facet of this ordeal seems to arise. Finally, I found hope in the form of a little pill that has dulled the roar by a decibel or two, although the “supermodel effect” of extreme weight loss and diminished intelligence and memory is far from desirable.

 

The hardest thing to deal with – what I am constantly trying to fight – is the fact that the cluster headaches seem to be slowly sapping my zest for life. The emotional and physical strain leaves little room for the bountiful energy I once had. I am very fortunate to be surrounded by supportive and caring people, but it hurts me to realize how this is affecting them, too. The ones who truly understand realize it is not personal when I become anxious and do not want to be touched or spoken to, when I isolate myself with my pain and frustration. Others expect the “headache” to pass like any other, and urge me to put on my game face and my little black dress for cocktail hour. Friends occasionally offer me Tylenol, as if that was the secret treatment all along. Some friends are simply tired of hearing my excuses; others feel helpless themselves.

 

It is said that what doesn’t kill you can only make you stronger, but I feel a piece of me being etched away with each attack. My strongest trait was always my unshakable confidence; I could once proclaim without a doubt in my mind, “I can do anything I put my mind to!” Slowly that exclamation point is starting to take the brunt of each painful blow, becoming a question mark instead. I am frustrated, confused, and angry. There are times I get depressed and find solace only in being alone. I do not mean to shut people out, but I feel as if I don’t have room in my head for anything but the pain that is holding it hostage.

 

            I recently had a reality check when a good friend was diagnosed with cancer. I realized that I should be thankful that although I live in constant fear of the pain, I do not have to live each day fearing for my life. And although the effects on our lives can be devastating, I remain hopeful that as long as we are alive to expose our troubles to those around us, we can begin to make a difference.

 

 If you are a sufferer, don’t be afraid to talk about your condition with friends, family, and colleagues – and despite your pain, realize that they are affected too. If you recognize these symptoms in a loved one or an employee, be open to what they have to tell you and try compromise so that everyone might suffer just a little less.

 

And if you’re a pharmaceutical company, please find us drug that works!

 

Mira Lotfallah