Like many, I was horrified to watch wildfires rage in southern California this past January, causing destruction, death, and the displacement of thousands of residents. As a former Los Angelean with close friends and family there, it was heartbreaking to witness from afar. I had difficulty reconciling the peaceful, serene vista I'd known with the charred and blackened ruins on the news and could only imagine how difficult it would be to drop everything and run. How much more difficult was it for those with neurologic conditions, forced to suddenly leave without resources or access to necessary medications?
This scenario inspired this issue's feature on emergency preparedness (“Natural Disasters Can Be More Dangerous for People with Neurological Conditions—Here’s How You Can Prepare”). We walk through some of the known challenges that arise amid natural disasters as well as practical steps patients and their loved ones can take ahead of time to mitigate the tragedies that might occur. While this does not take away from the grief those of us who have lived through natural disasters have experienced, perhaps we can take comfort in being prepared for the future.
Preparing for the unknown is part of the job for those who provide spiritual care. In the hospital setting, this can—but does not have to—include religious guidance, but we also can think of it as a way to find meaning and maintain well-being in our present state of mind and health. In this edition, we look at how spiritual care interventions, such as dignity therapy, can help create living legacies for patients to pass on to family members and loved ones, be it memories, pieces of advice, or reflections on a life well-lived (“How Spiritual Care Is Changing the Lives of Neurology Patients”). Spiritual care may benefit those struggling with new realities, such as vision loss, or those with a neurodegenerative condition who face a continuous decline in physical function. With elements of patient-centered care, compassionate spiritual care may strengthen the typical medical treatments that physicians prescribe, helping to find meaning in times of difficulty and uncertainty.
Empathy also can be found in our communities. Our story on grassroots advocacy (“How Families Are Leading the Charge in Rare Disease Advocacy”) shows how by sharing our stories and building awareness, we can feel less alone, particularly when dealing with a rare condition or disorder. Although their goals as advocates may have been to start a nonprofit, push for scientific advances, or raise funds, the advocates in our story tell us that it was in the act of being seen and encouraged that hope truly flourished, collectively and powerfully.
These advocates and others with neurologic conditions may find themselves among those struggling to deal with everyday normalcy, however, because of brain fog, an amalgam of symptoms that can include a feeling of slower cognition and poor concentration. Often, brain fog is an invisible symptom, and it can take a herculean effort for some individuals to get through each day. Brain fog can occur for many reasons, such as long COVID or neurologic conditions, including multiple sclerosis, migraine, and Parkinson's disease. In our “Ask Your Neurologist” column, our expert delves into some common causes and potential solutions for living with these symptoms.
For some patients, daily life may involve a balancing act as they struggle to manage medications prescribed by different physicians, some of which, upon closer review, may contradict or interact with each other. Our story, “How to Safely Manage Taking Multiple Medications,” touches on the difficulties that arise when more medications means more problems. From taking notes to having an open conversation with your doctor, the advice shared in this story can help you navigate issues that might crop up when you have multiple prescriptions.
I see what my patients do to take their medications correctly—all eye-opening to me as their doctor. They share their tips and tricks for managing their symptoms and medications, from setting up app notifications to mindfulness exercises. How do you prepare for potential problems? Do you have any novel ways you circumvent barriers? I'd love for you to share those with me, and with the readers at Brain & Life, so we all can continue to learn from each other. Please email them to us at brainandlife@wolterskluwer.com.
Sarah Song, MD, MPH, FAAN, Editor in Chief
