Keep It Real
Unless celebrities have a neurologic condition themselves or loved ones with a neurologic disorder, they are better suited for the cover of People magazine. I doubt Mandy Moore (“Mandy Moore Raises Awareness of Alzheimer’s On and Off Screen,” October/November 2021) has any idea what patients go through emotionally, physically, and financially. Please consider using real patients exclusively if you want your readers to take this publication seriously. —Victoria Boyd, Sparks, NV
THE EDITOR RESPONDS: We feature prominent figures on our covers (as you note) because we believe their visibility can amplify awareness of neurologic disorders, which may result in more attention and funding.
Lingering COVID-19
Throughout the article on long-haul COVID-19 (“New Research May Help People with Long-Haul COVID-19,” October/November 2021), there are numerous references to the similarity of post-acute sequelae of COVID-19 (PASC) symptoms and those of postural orthostatic tachycardia syndrome (POTS). The most commonly reported symptoms of both include extreme fatigue, exercise intolerance, cognitive dysfunction, heart palpitations, memory loss, blurred vision, and tinnitus. While PASC is still considered a mystery by many, diagnosing POTS is quite easy. It involves a simple tilt-table test that measures heart rate and blood pressure response to gradually raising 70 degrees from lying flat for 10 minutes. A positive result for POTS consists of a rise in heart rate of greater than 30 beats per minute (bpm) for adults or in a pulse of greater than 120 bpm without a significant change in blood pressure. The rapid heart rate is a compensatory response to insufficient blood supply to the brain. Performing more tilt-table tests or 10-minute stand tests on long-haulers with these symptoms would probably uncover more cases of POTS and provide more opportunities for rehabilitation. —Scheldon Kress, MD, Potomac, MD
Dressing Up for ALS
Dr. Richard Bedlack, who wrote the Speak Up essay (“Fashion Statement,” October/November 2021), is such a wonderful neurologist, writer, and fashion icon. It has been great to know him over the years and to appreciate his style. Thank you for featuring him and for continuing to bring awareness to amyotrophic lateral sclerosis (ALS). —Jodi O'donnell-Ames, Pennington, NJ
Tremor Truth
I am writing in response to a letter in the October/November 2021 issue that suggested a story on orthostatic tremor (OT), a movement disorder that is practically unknown to the medical community, including neurologists. The response acknowledged that Brain & Life has addressed orthostatic hypotension and essential tremor but not orthostatic tremor. OT is a progressive disease that is often misdiagnosed or not diagnosed at all. If doctors have never heard of the disease, how can they diagnose it? I've had OT for about 10 years but was diagnosed only three years ago by a movement disorder specialist. My initial symptom was not being able to stand still for long without marching my legs. Despite being frequently undiagnosed or misdiagnosed, OT is simple to detect. After 10 minutes with me, a movement disorder neurologist from a large, renowned hospital—who had seen only three other OT patients—placed a stethoscope behind my knee and heard a helicopter. That was the tremors going crazy. I was put on medication and responded very well initially. Unfortunately, my condition has since progressed, and my future is unknown. We need help in educating the medical field and the public. —Ruth Hochheiser, Wilmington, DE
THE EDITOR RESPONDS: We plan to cover orthostasis, including tremor, in an issue in 2022.
Neuropathy Nudge
I subscribe to your magazine and love it. Is there anything you can publish about current research on diabetic neuropathy? My husband has this debilitating disease and has tried many medications with no relief. There is no updated information, and no one seems to have answers. —Stephanie Miller, Skokie, IL
THE EDITOR RESPONDS: You are in luck. Our cover story on George Lopez is about neuropathy.
Stand-Up Guy
I came across a saying once: Fall seven times, stand up eight. That's what I try to do every day. No matter how many times I fall or end up in the hospital, I just stand back up and keep moving forward. Over the course of my life, I've had six head injuries, which have taken their toll on me physically and cognitively. The one I had when I was 19 caused some amnesia, so that time of my life is a bit cloudy. I also have symptoms like those of multiple sclerosis (MS), including heat sensitivity and a loss of control in the muscles in both legs and arms, and arthritis in my lower spine. I've read your magazine for years, and I still have all my copies. Thank you for all the informative words and people who inspire. The extras are great too, like the MS supplement with the October/November 2021 issue. I have so many of the same symptoms that fall into this category. Make each day a day to cherish. —Mark Mcgee, Spokane, WA
Rare Disease Request
I am a current subscriber and greatly enjoy your magazine. I hope you would consider doing an article on progressive supranuclear palsy (PSP), how it may relate to Parkinson's disease and Alzheimer's disease, and if there's any research in progress about the use of stem cells or other modalities in treating PSP. —Wayne Schenet, Buena Park, CA
THE EDITOR RESPONDS: We will keep your excellent suggestion in mind as we plan future issues.
Hope for Stroke Survivors
As special projects manager of Stroke Awareness Oregon, I'm writing to alert your readers to Just Say “Yes” to Life!, a collection of 26 vignettes about people who survived and thrived after a stroke. The book includes stories about a teenager who recovered well enough to enter college a few years after his stroke, a physician who reinvented herself as a writer and performer, and a forester who created a wheelchair that navigates rugged wilderness terrain. The tales encourage other survivors never to give up. —Ben Ritt, Bend, OR
Days with Dad
Every third Saturday I drove three hours to visit my dad, who had dementia, in a memory care center. I would spend the day with him. My dad loved getting out, going to lunch, and watching people at the mall, especially the children. We always ate at the same restaurant and had the same waitress, Tammy P. As we entered the restaurant one day, he chuckled and said, “We come here every time you visit, but every time it's a new adventure for me.” Sweet Tammy P. called my dad Darlin' and always gave him a hug. They kind of had a thing going. We always got good seats and good food, and she always brought my father ice cream and cookies for dessert. —Lenora Rain-Lee Good, Renton, WA
Correction
In the limb spasticity feature in the last issue (“Treatments for Limb Spasticity Can Help Ease Stiffness,” October/November 2021), Dr. Micah Baird was misquoted in a statement about nerve transfer surgery, which is not a treatment for limb spasticity. In addition, comments attributed to Dr. Baird about selective dorsal rhizotomy surgery did not include the importance of comprehensive evaluation to determine eligibility for the operation. The online version of the article has been corrected and updated. We regret the error.
