Pain Relief Strikes a Nerve

Regarding the article "Rethink Chronic Pain" (August/September 2015), I wish to point out that not all neurologic pain responds to painkillers. I have central pain syndrome (CPS) secondary to a damaged right thalamus, which has been treated with anticonvulsants, antidepressants, and muscle relaxers that have provided little relief from the relentless burning sensations. My symptoms continue to escalate, but I force myself to stay as active as possible and exercise daily. Physical therapy and acupuncture have not brought relief, though gentle squeezing massage does help momentarily. - Patti Gilstrap, White City, OR

No one should have to live with chronic pain. Some folks may rely on pain medications for the rest of their lives. I don't think the author would have written so blithely about the many treatment options if she herself were living with chronic pain. I generally enjoy your magazine and get a lot out of it. However, the tone of this article to me was, "learn to live with it." - Sue Harper, Sangerville, ME

The article "Rethink Chronic Pain," and the attitude of many pain specialists, is entirely too simplistic regarding how best to treat people with devastating pain. All the suggested approaches-adjusting mindset, exercise, taking a holistic approach-are good, but the bottom line is that some of us are still disabled by pain and do require some amount of stronger medicine in order to function. Pain specialists should listen to people who say their pain is unbearable, rather than make statements about the pain not being as bad as the person thinks. It is the physician's responsibility to monitor the patient's consumption of medication, and to suggest implementing alternative therapies and approaches. - Christine Begley, Sacramento, CA

THE EDITOR RESPONDS: Thank you for your thoughtful letters. Our intention was not to tell people to avoid opiates or simply to live with pain, but rather to consider thinking about pain and treating it on more than one level. We hope our readers will work with their doctors to consider a full range of options in addition to painkillers. And for those taking prescription opioids, we advised readers in the sidebar "Pay Attention to Painkillers" to keep in close contact with their doctors to manage side effects and guard against addiction.

Detective Work

Thank you for the article "Wearing the Detectives" (August/September 2015) about apps and devices that can be used by patients with various neurologic diseases. I want to add to that list a free app for people with myasthenia gravis (MG) called MyMG, created by the Myasthenia Gravis Foundation of America. The app contains valuable information on drugs to avoid, vaccine safety, educational audio podcasts, and patient-reported scales for tracking MG quality of life and activities of daily living. - Ted M. Burns, MD, Professor, University of Virginia, Chair, Medical/Scientific Advisory Board, Myasthenia Gravis, Foundation of America, Charlottesville, VA

Myasthenia Gravis on the Radar

Thanks for the essay "Double Trouble" by Denny Fernald (August/September 2015). I never see any articles about myasthenia gravis, and so many people don't know what it is. Any exposure is great.

I was diagnosed with MG in 2006 and have had my ups and downs. At times my arms and legs are weak or I have double vision and trouble swallowing. Recently, the television show Empire ended its first season with the main character believing he had amyotrophic lateral sclerosis, only to be diagnosed with MG. This was a good example of how this condition can be misdiagnosed. I hope they will go into more depth about it in the next season. - Mindy Lange, Mount Laurel, NJ

Too Much Celebrity Coverage

I love your magazine, but I take issue with your focus on celebrities. Why feature the rich and famous? Among your letters to the editor you have thousands of ordinary people you could use on your cover and feature in articles. Stories on how your readers cope, or have difficulty managing with limited money and resources, might be more instructive to the rest of us.

I'd much rather have seen Madeleine Stowe's mother on the cover-or her whole family. The story of Stowe's family coping in the 1960s ("Out of Isolation," August/September 2015) is not much different from the reality of many families today. - Vickie Rogers, Otisfield, ME

THE EDITOR RESPONDS: We strive for a mix of stories from public figures, who often use their visibility to bring more awareness to a particular condition, and from readers to show how people cope in their everyday lives.

Endless Forms

In your article about end-of-life care ("Can We Talk?," August/September 2015), you write that people want to complete forms for health care power of attorney, palliative care, and so on, but few actually do it. This might explain why: Each time I go to the hospital, or even some clinics, in my hometown, I am given several forms for "end of life." I am told to take these home, fill them out, and return them. But these forms have to be witnessed and signed by my family doctor, my attorney, my spouse, and a friend. Does each person have to witness each other's signature, too? That is a totally unreasonable requirement. If the process didn't involve so many people and weren't so long and tedious, I would certainly complete these forms in order to save my next of kin a lot of hand-wringing and worry. - Tom Thuma, Greenville, NC

THE EDITOR RESPONDS: Several organizations exist that can explain the process and help you fill out these forms, including Caring Advocates, a membership site for preparing and storing a living will, and My Directives, an online portal for creating a free emergency medical care plan. You could also ask an attorney to review the forms. And you can work with another family member to help coordinate the necessary signatures.

Polio Resource

In a letter in the last issue, there was a query from a reader with post-polio syndrome (PPS) seeking more information about the condition. The editor directed her to the National Institute of Neurological Disorders and Stroke's website (ninds.nih.gov). As a specialist in PPS, especially in cases of ventilatory impairment, I'd like to suggest Post-Polio Health International and its companion, Ventilators Users Network. - Norma MT Braun, MD, FACP, FCCP, New York, NY

I agree that you should have some information on hand to help educate people and doctors about polio and post-polio syndrome. Ideally all this information would be entered into a universal database. My aunt had polio in the 1950s, and she had to wear heavy metal braces on each leg and arm and use crutches to walk. She was happy and accomplished in playing the piano, sewing, and cooking, but she died in her mid-40s. Having to lean on crutches when she walked meant she never had enough air in her lungs. - Flo A. Roberts, Marstons Mills, MA

I am a polio survivor too. I have spoken with physicians who have told me that polio is not even mentioned in medical school these days, and they admit that they don't know how to help us. I have been employed full time during my life and each and every day I deal with muscle fatigue and weakness. At that time we were taught to "use it or lose it," and many of us have lived by that. The general population has no idea of the paralysis of polio or what an "iron lung" was. They have no idea how hard we fight each day to stay productive, regardless of our degree of disability. - Vicki Weber, Frederick, CO

Marijuana as Medicine

I read "Weed Backers" (April/May 2015) with interest, especially as it relates to epilepsy since my adult son and I both have the disease. But I was disappointed that the article only addressed children with treatment-resistant and catastrophic forms of the condition. I would love to see proposals from the scientific community that outline specific marijuana-related research topics needed to address a wide range of neurologic problems, as well as strategies to overcome societal and political barriers. I believe people who suffer from pain and other illnesses deserve improved access to this medicine. Your magazine has made a good start and raised some important questions. - Patrick Friel, New York, NY

Consider Other Disorders

I have been receiving your outstanding magazine for about five years now. I would like to see articles on spinocerebellar ataxia, or SCA. I was diagnosed with genetic SCA in 1994 at age 40 in a study done at the University of Michigan. My condition is progressing slowly, but there are many types of SCA, and some people are undiagnosed. It is a relatively rare disorder compared with multiple sclerosis and Parkinson's disease. At this time, there aren't really any known medications or cures. I hope to see more articles on ataxia in Neurology Now in the future. - Jeff Cohn, Trussville, AL

Would you consider publishing articles about narcolepsy? I was diagnosed with the disorder in 2010 and it turned my life upside down. I didn't respond well to the stimulants prescribed by my neurologist. I've since lost my career, my driver's license, my income, and my self-worth. If your magazine covered narcolepsy, maybe others would get help sooner than I did and their illness might not impact their lives as cruelly as it has mine. - Tina M. Smith, Woodruff, SC

THE EDITOR RESPONDS: We hope to cover these conditions in future issues. In the meantime, please consult our past articles about SCA and about narcolepsy. Brain & Life offers a patient resource page on ataxia and one on narcolepsy.

Concussion Questions

Regarding "Heads First" (August/September 2015), I would like to see an article on non-sports-related concussion in a future issue of the magazine, including a list of symptoms as well as information on when a bump to the head warrants a trip to the emergency room. - William DuSold, Severna Park, MD