A Butterfly Emerges

Jerry Gidner's attitude about Tourette syndrome (Pictures of You, August/September 2021) is wise and brave. I'm a 69-year-old woman with multiple sclerosis and cognitive problems. Even though I was an English major in college, I was never a skilled speaker. My declining conversational abilities have limited my social life. I fear being too slow and noticeably confused when I speak. Even more, I fear the puzzled looks on other faces when I have trouble understanding what's being said. I will never be a social butterfly, since I'm happiest with my nose in a book. But trying to hide my condition is not working. Thank you, Mr. Gidner, for inspiring me to get out of the chrysalis and speak up! —Dale Janette Barclay, Lancaster, CA

Insurance Claims

Kudos for addressing the topic of insurance denials (Ask Your Neurologist, August/September 2021). I've had several medications denied by my Medicare B plan and have had several failed “step edits.” This process should be illegal, especially for people with serious neurologic disorders. I have suffered harm from being forced to take drugs that either didn't work or had bad side effects. I've heard similar stories from others in chronic-illness support groups. I think the American Academy of Neurology and the American Medical Association need to start an organized pushback against this, so insurance companies no longer get to sacrifice patients' well-being in the name of saving money. —Mary Eckel, Woodstock, IL

THE EDITOR RESPONDS: The American Academy of Neurology (AAN), along with the American Medical Association and many other medical specialty organizations, consistently advocates against the unrestricted use of step therapy in health plans. We agree that the model's fail first approach puts patients at risk and creates a downstream effect of unaffordable drug costs in the United States. The AAN has been an active supporter of legislation to enact protections for patients on Medicare or other health plans. The Safe Step Act of 2021 is one such proposal and is currently supported by nearly 200 organizations. This issue is a high priority for the AAN, and we will continue to work with other pertinent groups to secure a legislative solution as soon as is feasible.

Civic Lessons

I was inspired, reading the essay (Speak Up, June/July 2021), by Mary Cook's ingenuity and resourcefulness. But what most impressed me was her consideration for other people. The strategies she employs to deal with her dyspraxia—crafting polite phrases, avoiding conflict-causing topics, and thinking before she speaks—are practices that all civilized people should use every day. If we all were as considerate and thoughtful as the author of this informative and delightful essay, the world would be a better place! —Teresa Lovejoy, New Hartford, CT

Essential Knowledge

In college I developed essential tremor of my head. It has been an embarrassment for 60 years, but has not held me back from teaching, ministry, and writing a self-published book (Why Is It Essential? I Want to Know: Insights from Those with Essential Tremor). Like many of us 10 million folks, I pretended no one noticed. One day I sat with my mother-in-law at a gathering at her assisted living home and listened to a man sing. He wanted participants to move their hands and arms, which I didn't do. My head tremor was going back and forth. He looked at me and said, “She says, ‘No, stop! We can't do that.’” Two more times he pointed at me. Afterward, I told him I wasn't saying no. I explained that I had essential tremor. I suggested he might want to be more careful as he entertained in nursing homes. That incident made me aware that I needed to educate people about the disorder, which I've done ever since—in person, through letters to the editor, and with my book. Too many with essential tremor don't like being in public. Those with essential tremor shouldn't feel embarrassed. —Doris Aldrich Smith, Fort Wayne, IN

THE EDITOR RESPONDS: Thank you for sharing your experience of dealing with essential tremor. We've written about the disorder several times, most recently in the February/March 2019 issue. Visit essential tremor page to view all related stories.

Uncommon Tremor

Your magazine has opened my eyes to many neurologic disorders and helped me confirm my orthostatic hypotension diagnosis. I was recently diagnosed with orthostatic tremor, a rare progressive syndrome, after nine years of telling doctors and neurologists that my legs vibrate, so much so that I often need assistance. I have searched your past issues hoping your magazine would have covered it, but I found no articles. In orthostatic tremor chat rooms, people from around the world recount their frustrations that so few medical people know about it. Please consider including it for a future issue. —Hilda Nafarrate, Lake San Marcos, CA

THE EDITOR RESPONDS: As you note, we have written about orthostatic hypotension. We've also written about essential tremor. We will add orthostatic tremor to our list of topics for the future.

Relatable Resource

When I first discovered your magazine, I was a principal at a public school for children with disabilities. I was immediately impressed with its readability, reliance on data and research, and encouragement. I considered it a valuable resource for people with neurologic disorders and their families. For the past 20 years, I have recommended it to families with children who had seizures and other neurologic diagnoses. After retiring, I continued to share it with friends who were diagnosed with Parkinson's disease, essential tremor, multiple sclerosis, and other conditions. I am grateful to the AAN for providing such a wonderful resource. By sharing information on breakthroughs in research and new treatments and interventions in the pipeline, Brain & Life offers hope. What's more, it is free and accessible to all. —Kathy Wallace, Ashland, OH

A Painful Rare Disease

I was in good health until my fifties. Then one morning, as I tried to get out of bed, I found I couldn't step on my left foot. When the discomfort morphed into terrible burning and redness in both feet, I went to the doctor. After a series of visits to a variety of specialists, I found the answer online: erythromelalgia (EM), a rare condition thought to be caused by abnormal narrowing and widening of certain blood vessels that disrupts blood flow to the feet and hands. I shared the information with my neurologist, who agreed. The disease has since progressed to my hands. I'm sure people with EM or other rare diseases can relate. While EM remains a rare disease, research funding won't be readily available. —Bonnie Linder, Chicago