The Road to Surgery

In response to "The Road to Surgery," I wanted to share that when I was 21 years old, I had a severe myasthenia gravis crisis and underwent a thymectomy at UCLA Medical Center. Within a year, I was in complete remission and have been ever since. I am now 79 years old and have led a full, active life. I will always treasure that scar down my sternum! - Janet Montgomery, Gold Canyon, AZ

Can you explain why insurance companies dictate whether a patient with Parkinson's disease can have deep brain stimulation surgery on both sides of the brain at the same time? If you have symptoms on both sides and your neurologist and neurosurgeon say both sides need to be done, they should be making this decision, not the insurance company. I know many patients who were in the same situation as Walter G. Newman ("The Road to Surgery," June/July 2018) who had one side done at a time. It's difficult for doctors to figure out the correct settings and medication dosages when only half the brain needs extra drugs. I had both sides done at the same time and it was successful. One surgery means less time under anesthesia and less chance of developing a hospital-acquired infection. Insurance companies shouldn't be practicing medicine. - Beverly Ribaudo, Yuma, AZ

THE EDITOR RESPONDS: Thank you for your letter. Insurance policies vary by payer, but typically the neurologist and neurosurgeon determine whether the patient should have unilateral or bilateral surgery. Many factors are involved in the decision. In some cases, the surgery team may recommend an implant on one side to see how the patient responds and progresses. In general, decisions are made on a case-by-case basis, according to the patient's needs. In addition, the American Academy of Neurology's Payment Policy Subcommittee works with insurance companies to ensure they follow appropriate medical guidelines and assists them in making policy decisions based on evidence.

Inspired Life

Thank you for the lovely article on Catherine Wolf ("Remembering an ALS Outlier," June/July 2018). She was an inspiration to many of us. - JS Stewart, Decatur, GA

Vance View

In your article on Courtney B. Vance ("Supporting Role," June/July 2018), you left out that he also played New York Assistant District Attorney Ron Carver on Law & Order: Criminal Intent. - Robert Conner, Huntsville, TX

Caregivers Need a Village

I snuck a copy of Brain & Life while housesitting for my landlords because I was intrigued by the cover line "Caregiving: How to Make It a Family Affair." I just finished reading the Editor's Letter ("It Takes a Village," June/July 2018) and wholeheartedly agree that caregiving takes a village. Unfortunately, I didn't have a village or any team at all while caring for my fiance, who had a slow-growing astrocytoma [a type of brain cancer]. I haven't even finished reading this issue, but I love it already. Thanks for all your work on it. - Debora Ewing, Annandale, VA

A Question of Hope

I am a long-time subscriber and love the new name and appearance. I appreciate the varied topics in Brain & Life and how the articles help patients and their caregivers. I want to comment on Alexandra Levin's story about multiple sclerosis (MS) in Pictures of You ("New Heights," June/July 2018). I admire her pluck and grit, but I think her positivity is a disservice to those who fought their disease and didn't win. I have a family member in his fifties who just passed away after many complications due to MS. Originally diagnosed with relapsing-remitting MS, he was later diagnosed with secondary progressive. If there had been a drug that was right for him, he and our family would have had more years together. I understand that hope is important, but for those of us living with side effects and symptoms that only worsen with time, living a full life and finding the right medications are a dream put aside. - Heather Scott, Wheelersburg, OH

Spinal Neuropathy

I understand that you will be writing on other causes of neuropathy besides diabetes in the future. I am interested in knowing more about neuropathy caused by spinal surgeries or trauma. I developed neuropathy in my feet about nine years ago following a spinal surgery. It's very difficult to drive and not feel the pedal, I walk like a drunk person because I lose my balance, my feet get very cold with no way to warm them, and the pain is the worst. My doctors have tried steroid injections directly in the foot, spinal cord stimulation, medications, and physical therapy, but nothing really works. I love life and people, but I mostly stay home as I can't stand for very long. I just wish there was more research on this condition, as it seems everyone I talk to has neuropathy or knows someone who has it. - Sherry Bellenfant, Franklin, TN

Learning to Communicate

I enjoyed your article about communicating with doctors ("Found in Translation," June/July 2018). I have had chronic illnesses since childhood, but being among a generation of undiagnosed autistic children, I never verbalized my symptoms. When symptoms made it hard for me to run, I assumed it was because I wasn't trying hard enough, and I thought constant pain was normal. Now that I've been a patient for most of my life, I write scripts ahead of an office visit for what I need to say. I still wish I had a close family member other than my father to speak for me if I need it. For now, I have most of my information typed into a smartphone app, but that can be unwieldy. - Jennifer Bailey, Davenport, Iowa

What's in a Name?

I don't think the new title for your excellent periodical is an improvement. Perhaps it's more accurate as to the intended subject matter, but in my opinion, the new words are a stretch and somewhat awkward. - Kendall Warren, Lake Tapps, WA

I am disappointed that Brain & Life has become the next People magazine. I prefer hearing from doctors and scientists about their new discoveries and research rather than the actor-of-the-month and the latest Pinterest-type article. I am more interested in hearing about patients like Cathy Wolf than Sharon Stone or Courtney B. Vance. The magazine is becoming more about glitz than science. - Robert Bevill, Merrimack, NH

THE EDITOR RESPONDS: The magazine's name has changed and the design has been upgraded to highlight brain health as well as neurologic disease. Our articles, however, contain the same trustworthy, neurologist-approved content we've always provided. Alongside stories of everyday people, we feature high-profile figures because we believe their stories help raise awareness of and research funds for neurologic disorders, which we hope will benefit all readers.

Brain Donation

Please write an article about how to donate your brain to science. One reason a cure has not been found for neurologic diseases is that not enough people donate. And it’s not just for people with a neurologic disorder. Healthy relatives can donate as well. Donating a relative’s brain can transform a loss into a positive experience. — Sara Rivera, San Juan, Puerto Rico

More Dementia Information 

My wife has had posterior cortical atrophy [a form of dementia] for 13 years. I have never seen any articles or information on this disease in your magazine. I would appreciate reading something about this. — Peter Stonitsch, Harrington Park, NJ

Your articles are always so informative and enlightening. I would like to see an in-depth article on Lewy body dementia. My mother had this terrible disease. During her illness, I began to realize that very few physicians know about it, including how to diagnose or treat it. My mom died in 2015, but I’m still interested in reading about it.  — Susan McCorkle, Rocky Face, GA 

THE EDITOR RESPONDS: Thank you for your letters requesting more coverage of dementia. We have covered dementia in the past and will continue to write about it in future issues. In the meantime, please visit our feature on former Vice President Walter Mondale, whose wife was diagnosed with Lewy body dementia.