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

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.


Monday, October 31, 2016

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The author works with people who have Parkinson’s disease but almost missed signs of the condition when they appeared in her mom.​

BY ANISSA MITCHELL

It comes on gradually but, still, I should have seen signs of the disease in my Mom earlier than I did. Maybe I was in denial because of the irony: for years, I've run a Parkinson's disease outreach program, where I provide education and counseling to people with Parkinson's and their families. Maybe it was because my mother doesn't live in the same state and I don't see her every day. Whatever the reason, I should have known better.

Instead, I delayed and avoided using the word "Parkinson's" even when her movements slowed, when her arms didn't swing while she walked, when she lost her sense of smell, and when she said she was constipated and had trouble sleeping. It was until she mentioned that her toe was bothering her and sometimes curling under painfully, that I finally blurted out, "You need to see a neurologist because I think you have Parkinson's."

Even that outburst didn't work. It wasn't until she developed carpal tunnel syndrome that she went to a neurologist. I encouraged her to describe her other symptoms to the doctor, which she did, but to my dismay, he told her he didn't think she had Parkinson's because she had no tremor. Even if she did, he said, it was "just a little Parkinson's." I was stunned. Saying someone has a little Parkinson's disease is like saying someone is a little pregnant. Either you are or you aren't. Sure, there are sub-types and different stages of the disease, but there aren't degrees. Either you have the disease or you don't. And while it's true that a majority of patients experience tremors, about 30 percent never develop one.

I was frustrated I hadn't noticed the symptoms earlier, knowing that by the time a person develops symptoms, such as a tremor or slow movements, he or she has already lost 60 to 80 percent of their brain cells that create dopamine, a neurotransmitter that affects movement and mood. Brain degeneration likely began years ago, so my Mom had more than "just a little Parkinson's" but, in her mind, she was cleared of the diagnosis.

Soon after, she came for a visit and accompanied me to a meeting with a Parkinson's disease specialist for whom I was scheduled to do a presentation. After observing her for a short time, the specialist explained what he saw and encouraged my mother to get a second opinion. When she did and the diagnosis was confirmed, I was relieved but saddened, too. I know too much about the disease and what it will mean for her, and of course, for me as her daughter and care partner.

I spend a great deal of my professional time going out into my community to educate people about the disease and being an active participant in managing it. How is it that I, who am informed, did not see the symptoms sooner, or did not make sure she went to a specialist? Like many family members and care partners, I experience the same frustration, guilt, and challenges that others face regardless of my professional position. I may be a social worker for people with Parkinson's disease by day, but I am still a daughter and sometimes these two roles collide.

Fortunately, my mom has found a good movement disorder specialist in her state and is getting proper treatment. My job now is to encourage her to dig in and fight this disease. While I struggle at times balancing being a social worker and a daughter, I remind myself to accept the things I can't change, advocate to change the things I can, and keep love at the forefront.

Anissa Mitchell_4x6.jpgAnissa Mitchell is a licensed clinical social worker for people with Parkinson's disease and their care partners at the Florida Hospital Parkinson Outreach Program in Orlando, FL. She lives in Longwood, FL, with her husband, three children, and three dachshunds. She enjoys running, biking, swimming, paddle boarding, and practicing yoga, and loves to read.


Tuesday, October 18, 2016

After a stroke at age 33, the author let go of perfection and embraced a slower, more meaningful life.

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BY DELANIE L. STEPHENSON

Before I had a stroke at the age of 33 in 2012, I thought I was the ideal mom. I worked hard as a teacher, but never brought any work home. I kept the house clean and was devoted 100 percent to my husband and 6-year-old daughter and 4-year-old son. I felt like I had everything under control.

That notion was shattered on June 6, 2012, when I sustained a massive brain stem stroke. I was locked in with no movement except my eyelids. I couldn't talk, walk, or swallow. All I could do was think and all I could think about was my family. Would I ever be that Superwoman again, so determined to be the best in every part of my life? Would I be able to hold and kiss my babies? Would my husband leave me for another woman, one more able to fulfill the role of wife and mother, a role I may never be able to play again?

After six months of intensive speech, occupational, and physical therapy in the ICU, a subacute hospital, and inpatient and outpatient rehabilitation, I was able to reclaim most of my physical. I walked with a cane, but was thankful I could walk at all. My speech wasn't the same but I was grateful I was able to communicate. I learned to swallow again and quickly made up for all the time when I couldn't eat!

The physical challenges were difficult but they paled in comparison to the emotional changes. While I was in the hospital, the doctors put me on antidepressants, expecting a little depression after what I had been through. But once home, I started having uncontrollable bouts of crying and laughter. I could barely make it through the day. I was finally diagnosed with pseudobulbar affect (PBA) and was prescribed a combination of antidepressants and other medication that brought the PBA under control somewhat.

While my body and mind were healing, my family and I were learning how to deal with this new person. My son often referred to me as Old Mommy and New Mommy. Old Mommy was fun, New Mommy not so much. He wanted to know when Old Mommy was coming back. He also developed separation anxiety and anger problems, saying he was mad at me for leaving him for so long while I was in the hospital, with no explanation. My daughter, however, became my nurse. She got me anything I needed and made sure all the toys were out of the way so I wouldn't trip on them. It was interesting to see two kids go through the same experience and react so differently.

It has been four years since my stroke and we are still adjusting to the new normal. I am slowly realizing that I'll never be the Old Mommy, a reality my children seem to be accepting. They know I can't go on field trips with a lot of walking nor can I make and bring homemade cupcakes to school on their birthdays—store-bought ones will have to do. They also accept that I may be too tired to do certain things and may need to take a nap. Life post-stroke isn't better or worse, it's just different.

Sometimes I'm even grateful for my stroke. It forced me to stop trying to be Superwoman, and it has slowed the pace of our lives. Instead of spending hours in the car racing from one activity to another, we watch movies or sit around the fire and talk. My stroke has helped us slow down, appreciate the gift of time, and be thankful for each and every day.

Delanie Head Shot2.jpgDelanie Stephenson is the author of The Calm before the Storm:  A Stroke Survivor's Story and the children's book Mom Had a Stroke, both available on amazon.com.  She lives in Wilsons, VA, with her husband and two children.