Speak Up

Enjoy essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.

Friday, October 27, 2017

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BY NANCY HALLO ​

Some people dread retirement. Others long for it. My husband and I both maintained dreams about retirement: in his, he lived in a waterfront community spending hours fishing, boating, and enjoying cooling gulf breezes. In mine, I sat at my desk and wrote.

He retired before me so his dream came true first. We live by the water and he fishes and boats. As I continued to dream and count the years, months, and finally days until I could apply for Social Security, I began experiencing neck spasms and difficulty moving my neck. I saw multiple specialists who performed numerous tests and recommended several therapeutic and pharmaceutical remedies, none of which relieved my symptoms or produced a diagnosis.

Then in June 2015, I was at the office of a neuroscience specialist when her physician assistant recognized my symptoms as spasmodic torticollis, also known as cervical dystonia, a painful condition in which the neck muscles contract involuntarily, causing the head to twist or turn to one side.

There is neither a cure nor an exact cause for cervical dystonia, but I believe my years as a transcriptionist aggravated my condition. In fact, before I stopped working I clung to the hope that retiring would alleviate my symptoms. Unfortunately, that was not the case. My symptoms continued to worsen. And no amount of treatment—not quarterly botulinum toxin injections, muscle relaxants, pain medications, cervical injections, acupuncture, strengthening exercises, or physical therapy—improved them.

I despaired that dystonia would destroy my dream of becoming a writer. I could barely hold up my head and the constant neck spasms were a painful distraction. I fell into a funk.

In the last few years, though, thanks to encouragement, direction, and support from a dear friend of 50 years, I started a blog and became a regular contributor for an online publication about home health care aides.

Over time, I've realized that my accomplishments as a writer far outweigh the pain and discomfort of my dystonia. Even more important, I've come to accept my condition. I'm learning to use my creative gifts to strengthen my resolve and keep me motivated. I wonder if my new attitude is the reason I'm seeing a mild improvement in symptoms during a second round of physical therapy.

My prayers, of course, continue to be for a cure in the very near future. But having waited a lifetime to achieve success in pursuit of my passion, I won't allow this physical obstacle to stand in my way. That is my new mantra!

Nancy Hallo.jpgNancy Hallo, a wife, mother, and grandmother, is now also a retiree and writer. After 20 plus years as a medical and legal transcriptionist and editor, she blogs at http://nancysparadise.blogspot.com/ and contributes to an online home health aide publication. 


Thursday, August 10, 2017

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BY CHRISTOPHER CHIOU, MD

I was diagnosed with a brain tumor in 2013, right in the middle of my medical residency. Before that, I was just going through the motions, making sure I saw enough patients to reach my numbers, graduate, and practice on my own. But on March 13, 2013, my view of medicine changed drastically—and I owe it all to love.

Love diagnosed me, treated me, helped me through the hospitalization, and aids in my recovery to this day. In short, love saved my life. On that day in 2013 when I developed double vision, a prominent, local neurologist obtained the MRI and laboratory work that gave me a diagnosis. Unlike me, he wasn't merely going through the motions. He loved his craft and it was because of this love that I was diagnosed.

When I needed surgery, the neurologist consulted with a neurosurgeon who performed the 16-hour surgery. What possesses someone to operate for 16 hours? What drove him to wake up every morning before the sun rises to visit me? Only love of his art could motivate him, I believe.

In my initial post-operative phase, I was in the ICU for one week, followed by a month-long stay on the general floor where I received dozens of visitors, including my primary care physician; a rehabilitation doctor; speech, occupational, and physical therapists; a neurologist; an ophthalmologist, and a neuropsychologist.

Many of these visits, especially from the physical therapist, were frustrating. Saying words like bumblebee, or putting pegs in a board did not thrill me. Many times I wanted to skip these appointments, but the love of my wife and two sons always urged me on.

It was the love of my friends that reminded me that I would get better. It was their love that gave me the hope I needed. Now, when I am doing balance exercises at the gym, I close my eyes and picture my friends and family. Their love makes me do that extra exercise; they are the reason I try to recover.

My words may sound cliché, but no matter how I spin it, I can't get around the fact that love has been the driving force behind this whole journey, from diagnosis to recovery.

As a physician, I hope to use this love in all my encounters. The days of going through the motions are behind me. I realize it is unrealistic to love every one of my future patients. Instead, I will love the art of medicine and the fact that I am fortunate enough to be in a position to help people.


 

speakup_1.jpgChristopher Chiou, MD, practices family medicine in Okemos, MI, where he lives with his wife, who is also a doctor, and two sons. He has recently begun writing about health in various journals.


Monday, July 10, 2017

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By SANDRA de HELEN                      

I've had headaches since I was a child. Everything from tension and sinus headaches to headaches that come from eating too much sugar. Then at age 35, I had my first migraine. It lasted 16 days and nearly cost me my job. I was called into a meeting with my boss and her boss and was asked if I was "up to the stress" of my work. I assured them I was and would find a solution for my pain.

In the bathroom where I was trying to steam my sinuses over a washbasin, a concerned colleague suggested that I might be experiencing a migraine and asked me why I didn't go to the emergency room for a shot. That was the first I'd heard of such a thing, but it wasn't the last of the many remedies and well-meaning advice I'd hear over the years.

I'm frequently told, "You're stressed," "You should give up ... chocolate, cheese, wine, sugar, coffee, tea, carbohydrates, aspartame sweetener, beans, all alcohol, yogurt, nitrates, nitrites, MSG...," or, "You need to regulate your sleep habits." Others share what's worked for them. "I always go for a run the minute a migraine starts. It works every time." Still others, offer remedies. "Have you tried a gluten-free diet?" "Have you tried losing weight?"

I've tried more than my share. When the migraines reached an intolerable number, I went on an elimination diet. I cut out every food and drink, and added them back one by one until I found my triggers—corn and all its myriad products, nitrates and nitrites, MSG, artificial sweeteners, wine, and beer. Now I rarely dine out, and I read every label of every item I consume. If it isn't labeled, I don't eat it.

Not all my migraines are triggered by food or drink. Some are brought on by fluctuations in the barometric pressure, and some have no apparent cause. The cruelest of all comes from taking medication for headaches, known as a rebound headaches. Ibuprofen is one of the primary culprits. Acetaminophen is another. Due to allergies, the only medication I can take for migraine is a combination of acetaminophen, butalbital, and caffeine (Fioricet). My neurologist says I can take it as often as 10 days a month without causing rebound headaches. That may be true for others, but not for me. I take no more than two pills a day for a severe migraine. If the headache lasts more than one day, I don't medicate. If headaches occur more than twice a week, I stop pain medication for at least three weeks.

Instead, I spend time in the dark, icing my head, warming my feet, and seeing no one. During one of those episodes I listened to different types of music and discovered psychedelic music at low volume made me feel better. I researched to see which city had the most stable barometric pressure. It was San Diego. Since moving, I'm happy to say I have way fewer migraines than I had when I was living in Portland, OR.

When I had migraines more than 15 days a month, I wondered what I'd do if I never had headaches. I still don't know, but by reducing the number of days to twice a month I can now make plans and keep them.

I go to the theatre. I practice yoga. I walk. I swim. I meet with friends. And for that, I'm grateful.

 

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Sandra de Helen, author of the Shirley Combs/Dr. Mary Watson series and the lesbian thriller Till Darknes Comes is a produced playwright, as well as a poet. Her full-length play A Missouri Cycle earned her a residency at Firefly Farms in the fall of 2017; her play A Grave Situation was produced in 2017 by Athena Cats as part of their theatre festival in Santa Monica. She loves to bake, cook, and go to live theatre. Samples of her work are available at SandradeHelen.com.


Wednesday, March 29, 2017

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After his grandfather is diagnosed with Lewy body dementia, the author finds ways to continue their hunting and fishing trips together.

BY NICHOLAS CASHMAN

Who do you think of when you hear the word hero? Maybe famous athletes, authors, or even politicians. My hero is a little more ordinary, my grandpa Long. My 64-year-old grandfather always loved to hunt, fish, and work on old cars. From the time I can remember, he was taking me out in the old, white boat to fish the point, or any of his other thousand hot spots.

The color, purple and white, is imprinted in my head as the only color jig (fishing lure) that works on the lake of the Ozarks. Not only was I with him when I caught my first fish, but he also took me on my first of many hunting trips. I wasn't the best hunting partner. I was barely old enough to walk and kept snacking and falling asleep, but he made sure to wake me every time he saw a deer. At the time, I was too little to shoot a gun big enough to kill a deer, but I shot many a BB from the Red Rider that never left my side. The most memorable hunting trip was in Winner, SD. We spent four days in a small ranch house eating home-cooked meals and walking the countryside shooting pheasant.

I will always remember the car shows and festivals we attended in his red '68 California Ford Mustang. Somehow I always ended up holding the trophy his car had won. On these outings, I learned more than how to fillet a fish or shoot a gun. I also learned to do it the right and honest way.

His entire life Grandpa worked as an electrical lineman which meant he was the guy who would lace up his boots at 3 am when the phone rang and go out into the thunder or snow storms to get the lights back on. He would travel to different states and work long hours restoring power. He didn't like working on holidays, but would do it anyway because it meant he'd have more money for his family.

One weekend long before I was born, a call came in the middle of the night, and it wasn't work. It was his sister saying their parents had been killed in a home invasion. It changed Grandpa. He no longer wanted to go out and fish the point or sit in a deer stand or take his car to a show. He did continue to pheasant hunt in memory of his father, but he could barely function. He went on like this for years until he got word from my mom that she was pregnant with me! It was almost like he awakened from a fog. He had a renewed interest in just about everything he planned to do with me.

In 2005, after my grandparents traveled to the United States Supreme Court to hear a case related to my grandparents' murder, grandpa noticed he lost his sense of smell. He began to kick at night and talk in his sleep. The doctors thought for sure it was posttraumatic stress disorder resulting from his parents' murders.

In 2013, as my grandparents were on their way to a holiday in Mexico, my grandpa had an anxiety attack he couldn't shake. His regular doctor ran some tests on him and sent them to a neurologist, who diagnosed him with Parkinson's disease. A few months passed and my grandma thought the diagnosis didn't seem right. They went to see another neurologist who ran more tests and came back with a new diagnosis: dementia with Parkinsonism features. They took the test results to Washington University in St. Louis where he was finally diagnosed with Lewy body dementia.

I found out one evening in 9th grade. My mother called me down to the living room and said we needed to talk. I figured I was in trouble or something. She tried to explain that her dad, my grandfather, was ill. My fishing partner, my hunting guide, and my idol had been diagnosed with an incurable disease of the brain.

The reason he is my hero? Because not once have I heard him complain about anything, not his stiff joints or how his mind slips. He has never used his illness, or the loss of his parents, as an excuse for something he can't do.

Every year during deer season, we wake up early on a brisk Saturday morning, and head to the woods. He doesn't last as long in the cold, but he never leaves my side, even if that means parking the truck next to my stand and running the heater at full blast. We also still enjoy fishing for crappie, a North American freshwater fish, off the point on the weekends. When his hands shake, he jokes that the fish like it.

When we go in the boat, I drive and remind him to wear a life jacket. Now that he no longer drives his truck, I drive it. He struggles with clothing and walking, but he still wants to go anywhere we go. Now our roles are reversed. It's my job to do what he did all these years: sustain his love of the outdoors and keep him safe while we do it.​

Nicholas Cashman is a junior at Sacred Heart School in Sedalia, MO. He is very active in baseball, football, hunting, and fishing.


Monday, February 6, 2017

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The pain of small fiber neuropathy drove the author to consider the unthinkable, but a letter from her daughter helped save her.

BY TERESA DAVENPORT

When I found the note on my bed, I could barely read it. But there it was: scribbled in my daughter's wobbly lines with hearts drawn in the corners, words stabbing me almost as much as the physical pain. She was sorry I was sick and she wanted me to be okay.

My 8-year-old's sentiments struck a deep chord, her words reflecting my own struggle with questions I would ask over and over. Why do my kids have to see me like this? Why can't I be normal, like everyone else?

These are questions I've asked ever since being diagnosed with small fiber neuropathy, a condition affecting small fiber nerves in the skin and autonomic nervous system that cause tingling, shooting pains, itching, numbness, and other strange sensations that migrate all over my body. I also get migraines. That day, four years ago, when my daughter left the note, was one of my worst. I'd pushed it aside to grab a trash can to my chest, rocking back and forth with waves of nausea.

The pain was so intense, I thought life wasn't worth living. I'd never had thoughts like that before: sincere feelings that I wanted to give up on life. The pain was very strong, intense. And my will wasn't strong enough. Even as I opened my eyes and saw the note—a blurry scrap of paper on top of rumpled sheets—the feeling was still there.

But then I read her words and something clicked. For too long I'd tried to deal with everything on my own. In the beginning I'd gone from doctor to doctor but eventually stopped, no diagnosis in hand, no advice or relief in sight. Now I realized I'd given up too soon. My life was consumed by fear. I feared the pain, the attacks that would come and cause me to have the horrific thoughts, ones a loving wife and mother should never have. This had to stop. I realized my life wasn't over. I had too much to live for. I knew I had to go back and pound the pavement again and not stop until I found answers and relief. I feared side effects from drugs, but at that point I feared continuing my life in that state even more.

Today, two years after my daughter scribbled that note, I no longer experience that level of pain. With a diagnosis in hand, I now have medication with minimal side effects. I use alternative therapies along with the drugs to bring much-needed relief. I have a diet and exercise plan that helps immensely. But most of all, I have a life free of those terrible thoughts, a life that still isn't easy but is definitely worth living.

I don't know what the future holds, but I do know I will never return to that state of mind. I'll do whatever it takes to live in balance with small fiber neuropathy, and I will treasure and appreciate many blessings in this life, including sweet words scribbled on a piece of paper from my precious young daughter. I've kept that note as a reminder of a place I will never go to again.

Thanks to her words, I recognize that life is worth living. I begin each day thankful for being strong and persistent enough to ask for help. Each morning I look at my reflection with pride. I feel triumphant that, for now, I've won.


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​Teresa Davenport has a background in journalism and lives with her husband and children in Marietta, GA. She writes about small fiber neuropathy to raise awareness of the condition. You can reach her at davenportteresa@comcast.net.