Speak Up

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

Friday, January 12, 2018

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BY CONNIE BOURGEAU

As the main caretaker for my husband, David, who has Parkinson's disease and myasthenia gravis, and my son, who has juvenile diabetes and needs dialysis, I sometimes wake up and think, "I'll just stay in bed today. Maybe no one will need me." On days like this when I feel totally overwhelmed, I shift my focus and reflect on the positive things in my life. Like breakfast.

My husband wakes up every morning at 6, drives to the gas station to get the day's paper, then comes home and turns on the Today show. He says he likes the way people on the show laugh and interact with one another. At 7:30, he enters the bedroom singing, "You are my sunshine, my only sunshine…" He doesn't know all the words, so he adds his own.

While I get ready, he fixes our breakfast—raisin bread toast, coffee, and ice cold orange juice, just the way I like it. Then he puts my pills in a little dish, and puts all of that, with a small glass of water, on a TV tray and carries it into the living room. The other day he surprised me by putting a little vase of zinnias that I had grown, on our tray. He knows how happy those "little ladies", as I call them, make me feel.   

He says grace before meals and asks if there's anything else I need. Doesn't he know that he is all I need? How lucky can a girl be?

David was diagnosed with Parkinson's disease in January 2014, and myasthenia gravis in August 2015. I am very thankful that he is as independent as he is. He gets very tired, and would like to be able to work, but he worries about me, and wants to make my days the best he can. That may be why we will celebrate our 50th wedding anniversary next week. We have always thought of each other first. 

It's not easy to watch what the diseases are doing to his body, and how it makes him feel to not go to the office every day. But, the last thing I want to do is feel sorry for him, or for myself.  Part of my job is to make our days better.

Tomorrow, if I'm lucky, I will wake up to my husband's off-key singing, enjoy our breakfast together, maybe take David or our son to a doctor's appointment, start decorating our house for our anniversary party, and count my many blessings. And it's okay if I need to take a nap in the afternoon, which I usually do. I will rest and think about how fortunate I am to truly see the many joys in my life.

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Connie Bourgeau lives in Naples, FL, with her husband and son. She retired from teaching elementary school after a 34-year career. She volunteers for the Parkinson's Association of Southwest Florida.


Wednesday, December 20, 2017

BY PAMELA TARAPCHAK

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In hospital room 17, amid the noise of the alarms and the endless jumble of IVs and tubing, a tiny green tree twinkled in the corner. Its warmth and sparkle provided a welcome brightness against the stark, clinical setting, a comforting landmark in an otherwise uncomfortable situation—spending Christmas in the hospital with my daughter, Ava.

In that small, sterile room, where nurses bustled in and out and monitors beeped, our family managed to celebrate the holidays. There were no stockings or cookies or caroling. No running down the stairs in the early morning hours to see the bounty of presents. Instead we sat on Ava's bed and exchanged small gifts. It wasn't a traditional Christmas, but we found happiness and humor in the situation, a skill our family has honed since Ava arrived 12 years ago.

This wasn't her first surgery, after all. Ten weeks before her birth, she underwent fetal surgery to repair a defect on her vertebrae after a diagnosis of spina bifida. She spent her first 24 hours in the neonatal intensive care unit with tiny pieces of tape holding a vent in her mouth. At 10 months, she had a shunt inserted to prevent fluid buildup in her brain. In May 2016, she had back surgery to correct scoliosis, which added three inches to her height.

All these long hospital stays and even longer recoveries at home are draining—for everyone. We've missed milestones, important events, and time with our other children. We've watched Ava endure pain and setbacks. Our experience is not something we would wish on other families, but I've come to appreciate the positive ways it has shaped our family. I see it in Ava who is bold, fearless, and stubborn. She may weigh only 60 pounds, but when she had to climb 20 stairs to prove she was ready to go home after spinal surgery, she climbed 30.

I see it in our son when he scoops Ava up after a particularly tiring day. Or when he sprints to hold doors wherever we travel and folds and unfolds her walker. I see it in our older daughter when she kneels to strap on Ava's braces, when she carries Ava's drink to the table, and when she pushes Ava down the road during a summer evening walk. I see it in all of my children when they unflinchingly endure the stares of strangers.

I see it again on that Christmas morning after Ava's bladder surgery. Instead of complaining or pouting, my children are laughing and filling the tiny room with joy and love. In moments like these, I see the greatest of wonders.

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Pamela Tarapchak is the editor of an oncology journal and lives in the suburbs of Philadelphia. When not ferrying her children here and there, she enjoys writing, a good movie, and the occasional run. 


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.