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.
Tuesday, June 30, 2015
The author finds clever workarounds for the inconveniences of myasthenia gravis—and reflects on his good fortune.
BY JEFF PALMER
I haven’t had a drop of alcohol in 20 years, but one morning in December 2013, I felt like I’d been on a major bender. I couldn’t open my right eye more than halfway, and over the next week I had recurring bouts of double vision. I visited the doctor, who told me the vision problems could be neuritis related to my diabetes.
I’d taken my initial diagnosis of type 2 diabetes in October 2013 very seriously, making drastic changes to my diet and lifestyle, cutting out salt and sugar, eating better and less, and skipping the late-night snacks. Just one week after making these changes, my morning blood sugar levels had dropped to within the normal range for non-diabetics, and in two months I had lost 30 pounds. I’ve since lost 20 more.
So it seemed strange that these new vision problems could be due to my diabetes. My doctor sent me off without answers, saying I should follow up if the vision problems didn’t disappear. And they did, for a while.
But then, six months later, I had trouble chewing. After a few bites, I found I couldn’t get my upper and lower teeth to connect. Like the double vision, it persisted intermittently for nearly a week. Even squishing blueberries in my mouth was a struggle. The jaw weakness also caused me to slur my speech. I went back to the doctor with these new complaints and was referred to a neurologist. Subsequent blood and nerve shock tests confirmed something I had already suspected and feared: I had myasthenia gravis (MG).
I was no stranger to MG; my dad was diagnosed with it in his mid-eighties, the last years of his life. Medication helped his symptoms but weakened his immune system, so he became highly susceptible to germs and infection. He passed away after a bout of pneumonia. While myasthenia gravis is not always hereditary, children born to parents with MG may be genetically predisposed to it.
I’ve mostly learned to work around my symptoms. For instance, rinsing my mouth or gargling can be difficult, so I stock up on Listerine breath strips. Sometimes I’m unable to close my eyes completely, which is most frustrating when I’m trying to sleep. Donning an eye mask helps, and I try to ignore my nightly resemblance to the Lone Ranger. (I’ve already modified his battle cry: “Hiyo, slumber!”)
One of the most disturbing side effects of MG is that I still occasionally develop slurred speech. When this happens, it can be difficult to convince panicked listeners that I’m not having a stroke! But I’ve learned some tricks; avoiding words with S’s and Z’s helps mask the problem, for instance. For years, my all-purpose interjection was “Sonofabitch!” Now I go with “Holy mackerel!” instead.
At 62, I’m stronger and in better health than my dad was when he was diagnosed. I take medications that have improved my chewing and speaking and eliminated my most alarming complication, difficulty swallowing. I’m thrilled that I can once again chomp up the almond in an Almond Joy. I’ve managed this disease as conscientiously as my diabetes. I downloaded information and learned all I could about the condition from the Myasthenia Gravis Foundation of America. I even underwent treatment with a series of infusions of intravenous immunoglobulin, which helps stabilize the immune system. This treatment could send my condition into remission for weeks, months, or more. So I remain optimistic.
One evening, I successfully navigated some Chinese food—crispy beef with steamed rice—with little effort. I taped the fortune that accompanied my end-of-meal cookie to my pill sorter so that I see it every day: “Find release from your cares, have a good time.”
Jeff Palmer is an editor and writer in Massachusetts, where he enjoys going to the beach, candlepin bowling, music—although he doesn’t play an instrument—and acting.
Tuesday, June 23, 2015
When secondary-progressive multiple sclerosis forced the author into a wheelchair, she gained a new perspective on the disabled community.
BY LORRAINE WASCHER WOODS
The first 54 years of my life were unremarkable. I earned a college degree, married and divorced, raised two children, and had a rewarding career as a teacher. I traveled and volunteered, was active and outdoorsy, and felt lucky to be able to share life experiences with family and friends.
That changed when I was diagnosed with multiple sclerosis (MS) at age 40. I had unsettling symptoms like falling for no reason, numbness in my arms or feet at odd moments, fatigue, and a painful, squeezing pressure around my torso (what patients call the “MS hug”). I fought hard to keep these symptoms at bay and to keep others from developing for as long as possible. I even thought I could beat the disease.
In truth, I was terrified of becoming disabled—which, for me, conjured up images of faceless people in tattered clothing with hungry expressions slumped over in duct-taped, battered wheelchairs on the south side of Chicago, near the suburb where I grew up.
But there was no denying that MS had dropped me into a strange, foreign place that held no room for my tennis racket, my skis, my road bike, and my hiking boots.
Still, I fought my disability, devising convoluted workarounds for my increasing limitations. When my unsteady legs required a cane, I hid behind the boxy cart on wheels that I used to carry my books and supplies at the school where I taught, gripping its waist-high handle for support. I thought I could push the scary, progressive, debilitating effects of MS out of my life, just as I was pushing the cart down the hallway. When my legs got so weak that I could no longer walk between classrooms, I got a scooter to propel myself around campus. Students and staff would joke and ask if they could hop on. It was all good-natured fun, but I hated the attention, hated being treated differently.
I’d been brought up to be self-reliant, independent, and able to accept challenges, but now I felt withdrawn, disconnected, and afraid. I felt like less of a person. My despair increased when my MS progressed to the point where I needed a wheelchair. I was face-to-face with my worst nightmare: I was officially disabled.
It took years, but I slowly grew to accept this new normal. Connecting with others who had MS was an important first step. From conversations with others in similar situations, I realized I was better off accepting my reality than fighting the invisible monster of MS. And a strange thing happened: The more I accepted my limitations, the more liberated I felt. Refusing to use a wheelchair kept me indoors, where my world was safe and easy but narrow. But embracing the wheelchair expanded my world—and my perspective.
I was embarrassed that I had ever tucked the “untouchable” disabled into a corner of my mind, as if they didn’t exist. Now, I’m a passionate advocate for people with disabilities, determined to show the able-bodied how they can help people with disabilities instead of standing by helplessly—or worse, ignoring them, as I once did. I hope stories like mine can stimulate meaningful conversations about uncomfortable topics or silence the hushed conversations I sometimes hear, for instance when I’m transferring from one chair to another and my legs collapse and I fall clumsily to the floor.
I want to make a difference in the lives of the disabled, and I believe I can do that by accepting my place in this strange new world—and championing its value to others.
Lorraine Wascher Woods, a retired Los Angeles public school special education teacher, was diagnosed with relapsing-remitting MS in 1993 and secondary-progressive MS in 2008. She currently lives in Seattle.
Monday, June 15, 2015
The author has learned a thing or two about caregiving after her husband was disabled in a roofing accident 15 years ago.
BY MARIE THERESE GASS
I am an expert caregiver, I thought as I detained the driver of the Metro Lift bus for disabled persons while my husband, Don, tried not to put on his coat for the trip to physical therapy. “I don’t wanna wear my coat!” he hollered.
Don, who is 79, fell off our roof 15 years ago and endured a traumatic brain injury. His balance still suffers, which he manages with a cane and regular exercise at a nearby physical therapy facility, and so does his common sense, which is not so easily fixed.
I held up my index finger as a polite excuse to break the conversation with the bus driver and called back, “Nobody asked if you want to wear it. It’s raining, so put it on.” As an expert caregiver, I know that Don functions best with clear, simple instructions that head off any objections.
Silence. “Now!” I added. I could hear his grumbling and the swish of the new blue Columbia rain jacket that he bought when we went to the outlet store to find a coat for me. I can still remember the episode. He already had a good coat—black, almost identical to his new one. Mine, a plastic-covered short one, kept leaving pieces behind wherever I went. I’d noticed the first one as I was shutting the door to our rental car—a flat island of slick fabric on the white seat. I thought about picking it up, but then thought better of it. It couldn’t be glued back on. So I shut the door and said nothing.
A few months later, when we went to the coat store to replace it, I found they had cleared out their women’s section for some construction. But there was Don, grinning broadly, whether because of the new coat a young salesgirl was Velcro-ing together on him, or because of the girl herself, I don’t know. “You don’t need a new coat,” I said to him.
“Yes I do, yes I do!” he insisted, while the girl hesitated, throwing me the “ogre” glance. How dare you refuse this wonderful disabled man a new coat? her glance implied.
“What’s wrong with your old one?” I asked, mentally picturing the black jacket, which was in perfect condition; he only wore it to get the mail or to go in and out of a car.
Don grew serious. “That one is rain resistant,” he said.
“And?” I raised my eyebrows.
“I need waterproof, not rain resistant,” he said triumphantly. The salesgirl nodded. I sighed. I decided not to argue; I’d buy the new blue coat for when his black one bit the dust. Meanwhile, I still don’t have a complete coat.
“So there’s this Vietnam vet,” says the bus driver, leaning against the wet siding, continuing our interrupted conversation. “And he comes back home and goes to live in the woods, and nobody’s seen him since. Everybody’s lookin’ for him.” I hadn’t heard this story before, which isn’t unusual since we don’t get the newspaper.
“We used to live in the woods,” I say, the whole panorama of trees and the rose garden and the handmade patios crowding for attention in my memory. “We lived on an acre in the forest.”
“No kidding!” the driver says.
“Until the accident,” I say softly. I’m surprised to find that my eyes are tearing as I think of that tract of land in Charjan Woods, a rural area outside of Portland, Oregon. Don and I had built quaint “his and hers” sheds that were featured in a local newspaper, and had been working on building a teahouse amid a copse of bamboo and rhododendrons. In the summer of 2003, three years after Don’s accident, we put the house up for sale. “I couldn’t take care of it all by myself,” I tell the bus driver.
The driver nods, just as Don bursts through the door. “I’m ready!” he announces proudly. I hold open the door of the bus. He taps on the driver’s foot with his cane. “Move over,” he says to the driver, putting the four prongs down past the welcome mat. Grabbing the bars on both sides of the door, he steps onto the bus, picks up his cane, and says, “I’m off!”
“Off” is a good word for it. That morning, at breakfast, Don had said, “You know what I don’t understand? How the coffee gets into the cup. I mean, we leave the lid on—so how does it get in there?”
I laughed. If only all our problems were so simple.
“What’s the other opening, besides where the lid goes?” I asked him. He couldn’t think of one. “Lid and…?” I prompted. Nothing. I got up and sang “I’m a Little Teapot,” acting it out, emphasizing the “spout” part with my scratchy voice. “So there’s the lid,” I said, patting my head, “and the…what?” I crooked my arm.
Don shook his head. “I don’t know. I just can’t figure it out.”
The coffee was finished by then, so I brought the pot over. “Notice the lid,” I said, and he nodded. “Okay. Now, what other hole is in here?” I pointed to the spout, but he looked right past it. “The spout!” I said. “The coffee comes out of the spout.”
Don looked blank. I tried to explain it a couple of other ways, and was about to let it go when he said, excitedly, “Oh, I get it—the coffee gets into the cup by the spout! That didn’t occur to me before.”
“Wait a minute,” I call out to Don as he takes his seat on the bus. “Don’t forget to work out lightly today. The guys are picking you up for poker later tonight, and you don’t want to sleep through that.”
The driver looks at me quizzically, and I am reminded that even though they help disabled people walk to the bus, set the lift platform, and strap their wheelchairs to the bars and floor inside, the people who drive the bus may have no clue what it really means to live with the severely disabled—the always watching out for, giving up my life for, knowing what he’ll do before he does it ubiquity of caring for a person with traumatic brain injury.
I instantly wipe the slate and my mind clean. “Take care!” The driver tips his hat to me as I close the door.
Marie Therese Gass, author of The Caregiver’s Tale and other books, lives with her husband of 50 years in Oregon City, OR.
Image: Don Gass, courtesy of Marie Therese Gass.
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.