Men in Charge
Caring for my wife, who had progressive supranuclear palsy (PSP), was the most difficult yet rewarding job I've ever had. I can't emphasize enough the advice about taking care of yourself in the story on male caregivers (“Male Caregivers Share Experiences and Unique Challenges,” June/July 2022). My wife worried that she would become a burden to me as her disease progressed. Knowing I was getting out on a regular basis, and seeing the good it did for my well-being, helped her realize that her concern was unwarranted. —Allen Nixon, Farmington, CT
As a parent of two daughters diagnosed with epilepsy (predisposed per genetic testing), I devour your magazine for new information, tips from other readers, and support. I'm also an occupational therapist of 28 years. I read “Male Caregivers Share Experiences and Unique Challenges” wearing that hat and thought the article was informative and had excellent resources, but the accompanying photo featured a wheelchair that is a relic from the 1950s. A photo with a contemporary wheelchair would have helped tell a better story and conveyed the importance of proper-fitting medical equipment. —Mark Schatzman, Arlington, TX
Anyone Can Have Epilepsy
I could relate on so many levels to the feature on neurologists who have epilepsy (“Neurologists with Epilepsy Explain How It Informs Their Practice,” June/July 2022). First, I've had epilepsy since birth due to complications during delivery and a seizure disorder since I was 5 because of encephalitis. Second, I read The Sacred Disease: My Life with Epilepsy by Dr. Kristin Seaborg. Her inspiring story shows that people with this condition can live somewhat normal lives and do great things for other people. And third, Dr. Brian Smith was one of my first neurologists. We need more stories like these that help educate the general public about a condition shared by 30 to 60 million people worldwide. —Dave Alexander, Muskegon, MI
I enjoyed the excellent article about neurologists who have epilepsy. I wondered whether the neurologists featured are allowed to drive—and if not, how they get to work and other places. My 20-year-old granddaughter has epilepsy and is unable to drive. —Kathie Stremiecki, Carmel, IN
THE EDITOR RESPONDS: Permission to drive depends on whether seizures are under control and what the laws are in a particular state. Seizures are under control if the person hasn't had one for six months, but each state has its own timetable.
Epstein-Barr and MS
As a scientist with a solid background in statistics, I thought the conclusion drawn in the Ask Your Neurologist column about the Epstein-Barr virus and multiple sclerosis (MS) (June/July 2022)—that the virus is the leading cause of MS—was not supported by the data in the Science study. I'm not questioning that the virus is an important variable in the development of MS, but the numbers in the study don't seem to add up to it being the leading cause. —Martha Woods, PhD, Denver, CO
THE EDITOR RESPONDS: The study in Science led by Dr. Alberto Ascherio provides compelling evidence of causality between the Epstein-Barr virus (EBV) and multiple sclerosis (MS) and suggests that cases of MS could be prevented by stopping EBV infection.
Truth or Consequences
After reading about confabulation (“Learn About Confabulation, Also Known as 'Honest Lying',” June/July 2022), I wondered how many politicians could be diagnosed with the disorder. —Allen N. Wollscheidt, Fort Myers, FL
MG Resource
I've had Parkinson's disease for more than 20 years and have dealt with it fairly successfully. Two years ago, I was diagnosed with myasthenia gravis (MG) after experiencing more typical symptoms of Parkinson's, such as slurred speech, weakness, and fatigue. I found your special issue on MG extremely interesting, especially since there is much less information on MG than on Parkinson's and even less on the intersection of the two conditions. —Robert J. Loomis Jr., PhD, Valparaiso, FL
Thank you for the special edition on MG. I was diagnosed in 2011 after experiencing double vision and going to several doctors. Since then, I have not had much help with it, so I appreciate your in-depth coverage. —Patty Meade, Moose Lake, MN
The special issue on myasthenia gravis was very informative and helpful to me. Although my symptoms are pretty much under control with medication, I was reminded of what to do in order to control weakness and fatigue. I am so grateful to you for this wonderful magazine. —Berniece Reed, Thousand Oaks, CA
Language Lapse
I was surprised by the description of activist Ady Barkan as “now confined to a wheelchair” (“Activist Ady Barkan and Actor Bradley Whitford Work to Reform Health Care,” April/May 2022). That usage is considered inappropriate by members of the disability community. The Associated Press Stylebook states, “We do not use the wording ‘confined to a wheelchair’ or ‘wheelchair-bound.’ People use wheelchairs for independent mobility. If a wheelchair is needed, and the description is relevant, say why. The term ‘wheelchair user’ when relevant is OK.” —Joan Peters, JD, MPH, Brooklyn, NY
THE EDITOR REPONDS: Thank you for reminding us of the importance of appropriate wording. We strive to do that in every issue, and we will continue to do so.
Rare Headache Type
One of your readers, Dianne Cooke, wrote about her experience with hypnic headaches (Letters, June/July 2022). For the past several months, I've been having these nightmare headaches. I say “nightmare” because very often the headache hits during a state of intense dreaming, and I wake up with pain 10 times worse than a migraine and still in the middle of a bizarre and disturbing dream. After doing some research, I found helpful articles on both uspharmacist.com and sleepfoundation.org. I hope you will give serious consideration to publishing a comprehensive article about these types of headaches. If primary care physicians and neurologists don't know about them, who will help people like me and Dianne Cooke and untold others? —Linda A. Deming, Newport, VT
Fragile X Education
My husband was diagnosed with fragile X tremor ataxia syndrome in 2017 at age 54. He and his brother, who died this year, were diagnosed at the same time when their falls could not be explained. Their diagnoses helped explain so many mysteries throughout the generations in their family. It turns out that three of the five siblings are fragile X carriers. My husband's sister has a 40-year-old son with a learning disability who was never diagnosed until now. Fragile X is not fully understood by many physicians and the general public. I have explained the condition to my husband's doctors other than his neurologist, including his urologist, pulmonologist, speech pathologist, and gastroenterologist. It's so important to educate about the disorder: how to recognize it, test for it, treat the symptoms, and learn to live the best life possible with it. I tried to enroll my husband in a Rock Steady boxing class. He was turned down because he doesn't have Parkinson's. We've since hired a personal trainer, but I wish he could be part of a group for the communal support. Have you ever written about fragile X syndrome and its permutations? —Linda Mahoney, Odessa, FL
THE EDITOR RESPONDS: Most recently, we profiled the mother of a 31-year-old man with fragile X syndrome ("A Mom Leads Efforts to Cure Fragile X Syndrome for Her Son and Others," April/May 2021). She and her husband and another family affected by the genetic disorder founded the FRAXA Research foundation to support awareness and research.
