Artful Inspiration
What a pleasure to see and read about the artwork of 8-year-old Leela Nagaraj-Datta ("Art to the Rescue," August/September 2020). Our granddaughter Savannah also uses art to express herself during this difficult time. Her perspective on the pandemic caught the attention of the assisted living facility where my mother lives. My mother has progressive supranuclear palsy and is attended to by a team of dedicated professionals, but it's the daily love from caregivers, technicians, physical therapists, activity directors, maintenance personnel, and cooks that makes the difference. Savannah and her siblings visit my mom by the window. A copy of our granddaughter's artwork hangs at the facility, and we made thank-you postcards out of it and mailed them to first responders, doctors, nurses, dentists, school officials, police departments, pastors, and other neighborhood citizens who make life a little easier for the rest of us. Art is indeed an inspiration, and when coming from a child, it is even more special. - Leeann Hutchison, Royal Oak, MD
Hugging Risks
Your story about hugging ("The Importance of Hugs," August/September 2020) does a great disservice to your readers. There is no safe way to hug someone outside of your household during this pandemic. We all must assume we may be carriers of this potentially deadly virus. Besides frequent handwashing and wearing a mask, it's crucial that each of us continues to maintain a social distance of at least six feet when interacting with anyone outside the household. As someone with multiple health challenges including chronic fatigue, I will continue to maintain my distance and shelter at home until the pandemic is under better control. - Terri Lundy, Chatsworth, CA
THE EDITOR RESPONDS: Many people are understandably anxious about hugging while the COVID-19 pandemic persists. As our experts noted, each person should assess his or her own risk of exposure. Those who decide hugging is safe should follow the safety measures outlined in the story.
Relatable Stories
I'm a big fan of Emilia Clarke, but her story of surviving two potentially fatal brain aneurysms certainly isn't the norm ("Game Changer," August/September 2020). And it doesn't reflect the struggles I have witnessed in the lives of the hundreds of people I've met in the 27 years since my own severe traumatic brain injury. Most of those people survive on less than $700 a month from Social Security. Rather than hearing celebrities' miraculous stories of rehabilitation, recovery, and survival, it would be better to hear the stories of those whose lives don't return to "normal." The people I know lack the social skills necessary to make friends, let alone get married, have a family, and nurture relationships. They wake up each morning still unable to drive, go to school, or find a job. The topsy-turvy world of survivors of brain injury is not so neat and clean. Stories of people whose daily lives are fraught with physical and psychological pain are worth reading about. - Scott La Point, PSYD, Clinical Psychologist and Neuropsychologist, Loveland, CO
Since my son was diagnosed with Lennox-Gastaut syndrome, I have appreciated reading about how families like ours handle similar situations. I do not appreciate hearing about it from celebrities. They do not have to fight insurance companies or figure out how to pay for adaptive equipment or respite care on a small income. They do not have to struggle to find coverage for their family member while they work a minimum-wage job. I prefer to read about regular people whose experiences are more relatable and comforting. - Cody Howe, Casper, WY
THE EDITOR RESPONDS: Well-known people help us fulfill our mission to promote greater awareness of neurologic disorders among the general public. In addition to our cover features, we will continue to share a wide range of stories from those affected by neurologic conditions in every issue.
Community Support
The writer of the letter "Getting Through" helped me through a very tough time (Letters, June/July 2020). She described how she and her husband coped after he was diagnosed with primary progressive aphasia. It was so meaningful to me on the day I read it: My husband had just died from the same diagnosis. That letter was a gift of hope that no one has been able to give me so far. I am forever grateful for it and want the writer to know her loving effort was not in vain. - Linda Alexander, Atlanta
Thank you for publishing a letter about dystonia in your last issue (Letters, August/September 2020). I wanted to point out that botulinum toxin shots for dystonia are for medical purposes, not cosmetic. For those wanting to share their experience of living with dystonia, visit dystoniasurveys.org. This new online initiative allows patients to describe their symptoms, treatments, and how they've adjusted—all anonymously. I hope researchers will discover patterns that trigger a giant leap forward in research for this often disabling disease. - Beverley Smith, Calgary, Alberta
Weight Loss Question
In the article about weight and COVID-19 in the August/September 2020 issue, Dr. Eva Feldman advised against losing weight if you have a neurodegenerative disorder such as Parkinson’s disease. She said it could worsen symptoms. My husband has Parkinson’s disease, and neither he nor I nor his neurologist was aware of this. Can you explain how that might be? - Linda Charkow, Dix Hills, NY
THE EDITOR RESPONDS: Progressive weight loss is common among people with Parkinson’s disease. Several studies, including one in Parkinsonism and Related Disorders in 2020, found that losing weight is associated with poorer outcomes, including a lower quality of life, fractures, dementia, and death.
Mistaken COVID Tests
I read with growing puzzlement the profile of Ron Lissak in the August/September 2020 issue, who tested negative twice for COVID-19 but still said he had the virus. I too have idiopathic peripheral neuropathy and thought the article contributed to the false impression that during these trying times every illness or condition must be COVID-19. That sense, even in the medical community, will result in many missed diagnoses. - Karl Schmidt, Jamestown, OH
THE EDITOR RESPONDS: Researchers are still learning about the accuracy of COVID-19 tests. False negatives, meaning the test is negative even when someone has the virus, are as high as 37 percent. False positives are 5 percent or lower. Four of Ron Lissak’s doctors believed his results were false negatives.
Dystonia Details
Thank you for publishing a letter about dystonia in your last issue. I have oromandibular dystonia—which affects my ability to open my mouth and causes pain in my jaw—and cervical dystonia, which makes it hard to move my head and causes pain on both sides of my neck. Because of this disease, I can’t look up at the stars at night or lie flat in my bed without experiencing tremors. The worst symptom is short-term memory loss, which my neurologist says is uncommon. Dystonia has totally upended my life, but I am doing the best I can. - Bette J. Franke, Sun City West, AZ
