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, March 18, 2015
BY MARY ROAKE-BARNETT
The diagnosis that changed my expectations
Came after a year of inundations
With loss of strength, and energy, too,
And I started doubting what I could do.
I expected to bowl until I was 90,
To travel to foreign lands
And take the hands
Of people who struggled along,
And walk with confidence, as I sang a song.
I would rarely need to see an MD
There would be no mention of a colonoscopy!
I’d jump rope with my grandkids
And ride with them on their sleds
If they ran away, I’d give chase
And catch those little Keds.
I’d join book clubs and discussion groups;
Try quilting and embroidery hoops.
I’d have aches and pains; that’s what aging will do,
But I’d stay healthy, for my mom lived to be 102.
But in January 2012, I felt worse than I ever had,
And started to wonder
When Dr. McGraw said, “You have Parkinson’s,”
I felt my life torn asunder.
At first I was relieved by the explanation,
But as I read more books, the diagnosis challenged my expectations.
Then I began to see,
In life there’s no guarantee
Stuff won’t always go as we planned it.
If we stay ill or well, we can’t control or demand it.
Life’s not fair, but gratitude beats self-pity;
I can moan and groan and be left alone
Or acknowledge what isn’t pretty.
I can pray for the courage to do the best I can,
And ask for the wisdom to follow God’s plan.
Monday, March 09, 2015
After being diagnosed with a benign brain tumor, the author finds ways to laugh about her hearing loss and balance problems.
BY DALLAS HALL
I have a brain booger.
At least, that’s what another acoustic neuroma patient told me in an online forum for people with this type of brain tumor, trying to make me laugh. At the time, I was newly diagnosed and found the comment far from funny. I was still in shock; I’m in great health, I thought. How could this happen to me? And how would it impact my life? Was it cancer?
I’d first realized something was wrong a few years earlier when I began losing hearing in my right ear, experiencing strange crackling sounds and intermittent ringing. The first two doctors I visited said it was probably due to increased pressure (which can happen after flying or due to congestion from a cold or allergies) and was most likely temporary. But after the condition persisted, an ear, nose, and throat specialist ordered an MRI scan, and discovered the tumor.
What Did You Say?
Once I learned that acoustic neuroma is benign and usually grows slowly or not at all, I came to adjust to life with my “brain booger”—and even found some things to laugh about. For instance, the hearing loss turned innocent comments into pretty funny remarks. Take the time I thought a waitress had asked me if I took “sugar in my pee” (tea) or when a friend told me he needed to get a “lap dance” (cash advance) after work. These misheard remarks were my body’s way of easing the distress of hearing loss: They gave me a good laugh once I realized what the people were actually saying.
When the ringing in my ear first started, I couldn’t stand the constant, high-pitched buzzing. But then my mother offered a creative, comforting solution to my tinnitus (another common side effect of acoustic neuroma). She told me to think of the buzzing and ringing as being attuned to the universe and its vibrations. Because of that, she said, I could also hear the angels sing. Now, I consider myself lucky to be serenaded by these heavenly hosts, but I do wish they could keep it down at night.
Wobbling on Heels
Because the tumor is growing on my vestibulorcochlear nerve, which helps regulate balance, I also sometimes lose my footing or wobble this way and that. This doesn’t bother me, except when I’m wearing stiletto heels (my passion) in public and suddenly bust into a clumsy rendition of “the twist.” In general, I’m amused when people stare at me, clearly thinking, “Girl, don’t wear ‘em if you can’t walk in ‘em!”
It’s Five O’clock Somewhere
But by far the most memorable encounter was with a vivacious elderly woman whose blunt honesty touched my heart. Seeing me stagger and sway in the aisle of a Wal-mart, she let me use her cart to right myself and confessed with a playful wink, “Honey, I imbibe before lunchtime, too. That’s why I’ve lived so long.”
I laughed and said, “It’ll be our little secret.” Boones Mill, Virginia, where I live, is known for its moonshine, which made the moment seem particularly funny to me. Though of course I wasn’t tipsy, I smiled and thought, “As long as it’s five o’clock somewhere, life is okay.”
As far as my symptoms are concerned, I’ve been pretty lucky. Other than the hearing loss and occasional imbalance—which happens infrequently, so I can still wear my high heels—it doesn’t affect me much. I live my life as I always have—surrounded by positive people, love, and lots of laughs.
A brain tumor is a serious thing, even if it’s not cancerous, but being able to find humor in my situation has been an important part of the healing process. So even if I lose my balance every once in a while, I take it all in stride (pun intended).
Dallas Hall is a social worker and writer living in Boones Mill, VA. To learn more about acoustic neuroma, visit the Acoustic Neuroma Association website.
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
dementia spun its web
absent but present
gone but not gone
she is alive
and with me
the person I knew
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
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.