Invisible Disorders

Very nice issue with Seth Rogen and Lauren Miller Rogen (“Seth Rogen and Lauren Miller Rogen Use Humor to Educate About Alzheimer’s Disease,” June/July 2021). I met them five years ago at a private event in Los Angeles after I donated to their charity. Since then, my girlfriend has been dealing with a so-far undiagnosed condition. She's seen a myriad of specialists (neurologists, nephrologists, cardiologists, urologists, endocrinologists) and has been hospitalized several times in the last few months. She's also experienced memory loss, confusion, and brain fog. I've been her full-time caregiver for the last five months. During that time, she's written a song (it's still in production), the proceeds of which she hopes to donate to people with similar disabilities. —Jennifer Petrics Edison, NJ

I've had dysautonomia for more than a decade, and there is no more information for me, my caregiver spouse, or my family than when I was diagnosed. Many of us are still called lazy, hypochondriacs, and worse because this invisible disorder steals everything from us. Additionally, some physicians don't know it exists or don't think it's real. Despite having all the symptoms, I went undiagnosed or misdiagnosed for 20 years. Please be more inclusive of all neurologic disorders. —Margaret Hays, Cantonment, FL

THE EDITOR RESPONDS: You've come to the right place. In our June/July 2021 issue, we wrote about postural orthostatic tachycardia syndrome (POTS) and other disorders of the autonomic nervous system. To read the article, please visit "Understanding the Mysteries of POTS and Other Autonomic Disorders."

Vaccine Help

I perked up when I read the story on vaccine hesitancy (“Experts Address COVID-19 Vaccine Hesitancy,” June/July 2021). I have a dear friend who is in her seventies who refuses to be vaccinated. I will be sharing this article with her. I am truly grateful for your publication. There is always much to be learned about research, therapies, and practical hints that make life easier and better for patients. —Bernadette Connolly, Canton, GA

A Pain in the Head

I'm always smarter after I read your informative and helpful magazine. I really appreciate the free subscription and look forward to Brain & Life in my mailbox. As someone who lives with chronic migraine that is not yet well controlled, I was excited to see the headline on the cover about new treatments for migraine. I was disappointed when the article (“How the Pandemic Has Affected Patients with Migraine,” June/July 2021) proved to be about increased cases of migraine and exacerbated symptoms because of the pandemic. I hope it was a mix-up, and an article about new treatments will be available soon. —Luann Martin, Cartersville, GA

THE EDITOR RESPONDS: We apologize and understand your frustration. The cover line referred to a portion of the story that was published online only due to lack of space in the print edition. Read Exploring New Treatments for Migraine to see the information from that section.

Epilepsy's Effect

Thanks to Matt Tifft for publicizing his diagnosis of epilepsy (“Promising Epilepsy Research and New Treatments Give Hope to Patients,” April/May 2021). Like him, many of us have sidelined our careers because of seizures, side effects, and problems with medication. After 18 years as a nurse, I had to leave my job after my memory declined. I did some quality-assurance nursing after that, but I missed the human interaction terribly. —B.G. Simmons, Chicago

Dealing with Dystonia

After reading the interview with Tom Seaman (“Tom Seaman Thrives Despite Cervical Dystonia,” April/May 2021), I contacted him to share my experience with spasmodic torticollis. I'm one of the lucky ones. I've been in remission for about 44 years. I am not cured and doubt I ever will be. My right hand shakes a little sometimes, and if I'm upset or worried, I might get some head tremor. But by and large, I'm “normal.” The worry about this syndrome will be with me till I die. Over the years I've seen and talked with more people who have this than I ever thought I would, many of whom say they reach a plateau and never get back to normal. Thank you to all the neurologists who work so hard with this and tons of other neurologic ailments I've never heard of. —Dan Sarper, Aventura, FL

I have two kinds of dystonia: oromandibular [involuntary movement of the jaw muscles] and cervical [an involuntary contraction of neck muscles that causes the head to twist to one side]. More recently, I have been experiencing memory loss. If it were not for my piano, my love of music, and prayers, I would be in a deep depression. Fortunately, I continue to play and teach piano. —Bette J. Franke, Sun City West, AZ

Long-Awaited Research Efforts

In the last five years, since being diagnosed with degenerative cervical myelopathy (DCM), an upper motor neuron disease, I have worked with the Myelopathy Foundation in London, the University of Cambridge London, the AO Spine Foundation, and the James Lind Alliance in the first-ever research and clinical trials—Recode DCM—for this condition. Myelopathy.org provides information for anyone interested in learning more about the disease. —Margot Miller, Putney, VT

Alcoholism and Alzheimer's

Years ago, as a medical social worker, I took a course on alcoholism and women's health at MacDonald Women's Hospital in Cleveland. The social worker who taught the class convinced the hospital board to fund an inpatient treatment program. My two sisters, who are in their seventies, are recovering alcoholics and now have dementia even though they both got sober in their forties. This message should be included as part of your articles on dementia, especially for your younger population of readers. —Ann Gillette, Cleveland, OH

Finding Purpose

After a series of brain injuries, including a subdural hemorrhage, three aneurysms, cerebellar stroke, occipital stroke, craniotomy, and part of my cerebellum removed, I had a light-bulb moment. I decided to make it my mission to volunteer at hospitals and rehabilitation facilities and offer advice, guidance, support, and hope to patients, families, and caregivers as they move forward after brain injury. I've already volunteered at two hospitals, and the feedback has been overwhelming. I plan to fly around the world helping people heal from brain injury and sharing vital information about my own recovery, which is also available on my website at thereisasolutioninc.org. —Leslee Williams, Las Vegas

Request for More Information

I'm a brain injury survivor with hydrocephalus, which is controlled with a shunt. Twice I've had to have the shunt replaced—once when I was 4 and again when I was 38. For the last replacement, I underwent a second operation after the first shunt failed. The second surgery was a success, and I haven't had problems with it since. I have a mild headache occasionally and a bad one about once a month. Hydrocephalus is a serious illness that is life-altering and can be life-threatening. Perhaps you can write about it in your publication to raise awareness. —Jeffrey Ash, Leesburg, VA

About three or four years ago I was diagnosed with normal pressure hydrocephalus (NPH) and received a shunt that has changed my life considerably. I had never heard of this condition, and in my experience talking with people, most of them are not aware of it either. I think an article about this and the surgery to treat it would be interesting to people and at the same time would really help those who may have the disorder but don't know that there's help. —Sandra McAllister, Bend, OR

In 1960, when I was 9, I contracted spinal meningitis, which destroyed my hearing. Six years later, I began falling asleep in class. The problem got so bad that I was fired from my first real job for not staying awake. I have both severe narcolepsy and idiopathic hypersomnia—and I'm deaf. I'm always at least 80 percent asleep during my waking time and have little energy to accomplish anything. Perhaps your publication can address this condition. —William Burns, Bath, MI

THE EDITOR RESPONDS: Thank you all for sharing your experiences. We have written about hydrocephalus, NPH, and narcolepsy before. To view articles about any of these disorders, visit the Disorders directory. In the meantime, for an essay by somebody with hydrocephalus, read the Speak Up essay from this issue.

Forgotten Caregivers

In February, my sisters and I said goodbye to our 94-year-old mother, for whom we were caring. We understand the life so many are living as they care for aging parents. But there's another category of caregivers that's often overlooked: older parents (I'm in my seventies) caring for adult children who are disabled. Three of my four children are married with children of their own. My youngest child is now 40 and has a traumatic brain injury, epilepsy, and lupus. I care for her on my own with the help of a nurse three half-days a week. I work part-time for the Disability Rights Center of Kansas, which brings in some income and keeps my world from becoming too small. Through my job I occasionally meet other parents in my situation, and we share our worries. We're scared about what will happen to our children when we can no longer care for them. Think about a story that focuses on us. —Diane Woodard, Shawnee, KS

Stamp Out Alzheimer's

As a former caregiver for my dad and late husband and an advocate for families facing the challenges of dementia, I'm writing to let your readers know about the Alzheimer's disease semipostal stamp [semipostal indicates that the stamps are for raising awareness and funds], first released in November 2017. The American Academy of Neurology was one of five major advocacy organizations that endorsed the original proposal for this stamp and helped make the multiyear national campaign a success. Five hundred million stamps were originally printed, and 100 percent of the profits are transferred to the National Institutes of Health to support research in the fight against Alzheimer's disease. As of the end of May 2021, 8.9 million stamps have been sold, bringing the total revenue raised to more than $1.1 million. The easiest, fastest, and most convenient way to purchase the stamp is at usps.com. —Lynda Everman, Knoxville, TN