Self-Care Regimens
I am writing in response to Dr. Orly Avitzur's call for stories about self-care (From the Editor, February/March 2023). I am a music therapist who works with people who have dementia. When the pandemic started and I realized I needed to protect my brain and mental health, I came up with the acronym SPECS—socializing, physical health, emotional expression, cognitive learning, and spirituality—to remind me of the importance of self-care. —Nick Jones, Warwick, NY
I liken self-care at this stage of my life—I'm now in my seventies and have had multiple sclerosis for 30 years—to my struggles adjusting to the arrival of my first baby. I would wonder, “Why does it take half a day to get started?” I was perplexed and amazed that at noon, I was still in my robe and no closer to getting anything done. Today, it feels like déjà vu. I can speed up my exercise and stretching so I can get to other chores, but I still have to stop everything to lie down. Or I can postpone my strength training and balance routines to make a nutritious meal, but I still need to start the laundry after yet another break for rest. No matter how I slice it, half the day is over before I can even think about errands or socializing. But the important stuff—exercise and rest—is not negotiable. Self-care must be addressed first, so I can eventually enjoy the rest of the day—even if it is midafternoon! —Gayle Franck, Sarasota, FL
I believe that adversity and determination contribute to self-care by helping build character. —Robert Acevedo, Disabled in Action of Metropolitan NY, New York City
After retiring almost two years ago, I looked forward to morning tea at my favorite café, bike rides, and travel, but my husband's health has declined so rapidly that my self-care routine has been replaced with frustration, concern, countless doctors' appointments, and guilt. My husband's confusion and memory have worsened significantly. I am trying to accept the progression of these symptoms gracefully, but mostly I feel as though I am barely holding on. I pray and try to be positive, only to find myself in tears moments later. He played music most of his life until August 2022, when he lost interest. I didn't mean to include all these details, but it's been therapeutic to type these words. I'm doing my best and trying to live in the moment, as the potential of what is likely to come is too painful to think about. —Janet Hillebrand, State College, PA
Seizure Protocol
The advice given regarding treatment of tonic-clonic seizures is dangerous and should be promptly and prominently retracted (“Making Schools Safe for Students with Epilepsy,” February/March 2023). A tonic-clonic seizure lasting five minutes or more is a neurologic emergency. Advising school personnel to administer emergency medication to someone who quite likely is unable to swallow is a grave mistake. School personnel in such cases should be advised to call 911. —Marilyn Newsom, MD, PhD, Boulder, CO
THE EDITOR RESPONDS: Thank you for your comment, as it is important to respond appropriately in these situations. Students with epilepsy should have individualized seizure action plans that are tailored to their seizure types and histories. Rescue medication can be given safely by other routes (such as a nasal spray) to people who cannot swallow a pill. In some cases, both administering rescue medication and calling 911 are appropriate. School personnel must be given specific directions for rescue medication that meet the needs of that student.
Pet Wellness
In the article about pets and neurologic disorders (Ask Your Neurologist, February/March 2023), I noticed that fainting (syncope) was not mentioned. While working in an animal shelter, I was interacting with a dog that, while running and playing, would fall over and seem to lose consciousness for a few seconds. It apparently can be caused by more than one condition. —Diana Webber, Orlando, FL
Thanks for giving the brain health of our furry friends some attention. I thought vestibular disease, which is more common in dogs than in cats, also should be mentioned. The symptoms, which can come on suddenly in otherwise healthy animals, are dizziness, loss of balance, nausea, and rapid eye movement. Much is still unknown about it, but it is believed to be caused by a problem with the inner ear. —Linda Dills, Tucson, AZ
THE EDITOR RESPONDS: Thanks for mentioning other neurologic conditions that pets can develop. Syncope (fainting or a loss of consciousness that occurs when the brain doesn't receive enough oxygen) in dogs and cats can be caused by a variety of conditions, including arrhythmia, heart failure, and pulmonary hypertension. Vestibular syndrome refers to a group of disorders that affect the balance system.
Caregiving Challenges
The essay in the last issue about how a husband adjusts to changes in his wife after she sustains a stroke struck a chord (Speak Up, February/March 2023). Three members of my immediate and extended family have been altered by stroke, and finding a satisfying way to adapt to those changes is incredibly difficult. Thanks for speaking up about this issue. —Joe Barrett, Asheville, NC
Ultra-Processed Food
Since the 1960s, food processing has changed dramatically. At that time, most processed food contained corn oil and beet sugar. Now it may contain one of hundreds of oils and cane sugar, which is cheaper than beet sugar. I believe it's those changes in food that may contribute to an increase in dementia in the United States. —Carolyn Boyles, North Little Rock, AR
Giffords and Gun Control
I was concerned that some folks viewed the Gabby Giffords article as political (“Aphasia Won’t Stop Gabby Giffords from Speaking Out,” October/November 2022). I don't believe that gun control is a political issue. Giffords could have led a quiet life in recovery, but instead, she has chosen to speak about her experience to help others. It shouldn't be controversial for a person whose life was forever altered to wear a T-shirt about gun control. —Christina Coates, Phoenix, AZ
Proud Community Members
My wife had a stroke last September while grocery shopping. She was hospitalized again eight days later after exhibiting similar symptoms. Both times, rescue workers, the stroke team, and hospital personnel were exceptional. I discovered Brain & Life magazine while in the waiting area of her new neurologist's office and read it from cover to cover. We subscribed that night. Since then, I have recommended it to several family members and friends. I look forward to receiving it in the mail every two months. The magazine is informative, educational, and most important, helpful. Your expert staff, guests, and readers are wonderful to listen to. I can hear their voices as I read the stories. I'm quite confident the publication helps many individuals and their families. My wife and I are very thankful to be part of “the Brain & Life community”! —Tom Verdi, Providence, RI
TBI Stories
One of our daughters sustained a traumatic brain injury due to a car accident. She recovered, but it took decades, and the accident and her injury changed our family in dramatic ways, which we chronicled in The Miracle Child: Traumatic Brain Injury and Me. Since then, we have become passionate advocates for people affected by brain injury. —Kelly And Michael Lang, Fairfax, VA
Almost seven years ago, my boyfriend's skull was crushed when a truck fell on his head. He was rushed to the hospital, where surgeons replaced the crushed bones with titanium plates. Although he has made an incredible recovery, he still experiences mood disorders, memory problems, seizures, and sporadic limb movements. He also has trouble speaking sometimes. I'm sharing his story in the hope that it inspires and informs others. —Jennifer Creel (and Jacob Blair), Oak Grove, MO
Article Requests
My 91-year-old mother was diagnosed with multisystem atrophy (MSA) last year, and I can't find much information on this rare disorder. Would your publication consider exploring this condition so that we can better care for her as her symptoms progress? —Karen M. Colbourn, Wilmington, DE
Very little has been written about the brain fog that accompanies autoimmune diseases such as lupus. I am optimistic that your experts can explain the differences among brain fog, Alzheimer's disease, and other dementias. The testing to differentiate is costly, and the emotional consequences are great for the patient and family. —Cherie Kirschbaum, Denver, CO
THE EDITOR RESPONDS: As always, we appreciate receiving suggestions from readers about topics to cover. We will keep MSA and brain fog in mind for future issues.
