Fan Club
I enjoy most issues of Brain & Life, and I appreciate that it's free. The August/September issue was perhaps the best yet. Front to back, I found valuable stories, information, tips, and wisdom. It was an excellent mix of editorial. So much of it was both immediately useful and, in my view, fascinating. I just thought I'd extend a compliment to the entire staff. —Cable Neuhaus, Palm Beach Gardens, FL
I just finished reading the August/September 2022 issue cover to cover. I am an in-home caregiver for people with Parkinson's disease, and I also volunteer at the Rock Steady Boxing gym where they work out. Parkinson's disease runs in my family, so I am quite familiar with it. My mom introduced me to your magazine a couple of years ago. I could not put this issue down! Every article and story had some nugget of useful information or something I could relate to on a personal level. I thoroughly enjoyed the Healthy Living story on London cabbies who are involved in Alzheimer's research (August/September 2022). I hope to see a follow-up story someday.
Thank you so much for shining a light on so many topics that are near and dear to my life and career. —Susan Boring, Sacramento, CA
Identity-first Versus Person-first Language
For much of my professional career, I worked with children with autism spectrum disorders (ASD). In the Ask Your Neurologist column (“Is There a Link Between Epilepsy and Autism?” August/September 2022), children with ASD were referred to as ASD children. I feel it is important to focus first on the child rather than the diagnosis. It is my hope that in future issues, articles will be edited in a way that focuses first on the person and not the medical condition. —Kathryn Gillison, Haslett, MI
THE EDITOR RESPONDS: Thanks for writing in. At Brain & Life we are sensitive to your concerns and consider these matters carefully. It is our understanding that most people in the ASD community prefer to be identified by their medical condition first. According to a survey conducted by the Organization for Autism Research in 2020, more than 80 percent of respondents preferred identity-first language. However, we encourage readers to tell others how they wish to be identified.
PSP Resource
I read with interest your article about progressive supranuclear palsy (“Learn How Rare Movement Disorder Progressive Supranuclear Palsy is Diagnosed,” August/September 2022). My wife, who died from the disease almost six years ago, experienced many of the symptoms described in the article. I do wish you had included the CurePSP Foundation (CurePSP.org; 800-457-4777) in your list of resources. The support it provides for people with PSP and their health care providers includes several guidebooks and disease-specific pamphlets, videos from ophthalmologists and speech and physical therapists, a list of hospitals in the United States and Canada classified as CurePSP Centers of Care, and a directory of local and national support groups and peer supporters. —Allen Nixon, Co-Facilitator of the Connecticut Curepsp Support Groupm Farmington, CT
THE EDITOR RESPONDS: Great suggestion! We have added the website and telephone number for CurePSP to the Resources section of the online version of the article.
Understanding Staff Shortages
Before reading your article about how the pandemic is causing supply and staff shortages (“9 Tips for Getting the Neurologic Care You Need Despite Staffing Shortages,” August/September 2022), I truly had little idea what was behind the delays in scheduling appointments and getting responses from staff. The suggestions in the article are just what we patients need to hear (although not necessarily what we want to hear). Your article was a reminder that we need to be more proactive about getting the care we need. —Robin Caron, Hamden, CT
Thriving with Myasthenia Gravis
Thank you for the recent special issue on myasthenia gravis (MG). Here's a bit of my experience. The year 2017 was the worst ever. I lost my wife, I had a hip replacement, and I was diagnosed with MG. I'm now 77 and back to a normal quality of life. I play pickleball and walk two miles several days a week. My mantra regarding exercise is “Inch by inch/it's a cinch/Set measurable goals/Know your limitations/Listen to your body.” I get intravenous immunoglobulin infusions every 12 weeks and remain symptom free. All things considered, life is good. —Garry Morehouse, Midland, ON, Canada
Advocates All
Since sustaining a traumatic brain injury and surviving two strokes, I have become a passionate brain injury activist both in North Carolina, where I live, and nationwide. I recently started EmergencyLifeNet, Inc., a nonprofit organization that helps brain injury survivors and their families. I also have been appointed to the Brain Injury Advisory Council of North Carolina, and I'm one of two representatives from North Carolina on the National Association of State Head Injury Administrators Council. I'm sharing my story with the world because I believe I survived to help people. —Jordan Slade, Research Triangle, NC
I appreciate your reporting on nutrition, exercise, treatments, and how different people from all walks of life are coping and thriving with different kinds of neurologic illnesses. However, I wonder if, in always highlighting and encouraging public activism in dealing with these disorders, you aren't raising the hopes of your readers that Congress or any governmental body will solve these problems, only to have those hopes dashed. —Paul J. Perrone, Springfield, VA
THE EDITOR RESPONDS: Advocacy is an important component of both Brain & Life and the American Academy of Neurology (AAN). One of the AAN's goals is to build a network of neurologists, patients, caregivers, and prominent figures to advocate for improved care for those affected by neurologic disease. Everyone's voice can make a significant difference in the AAN's mission to promote high-quality neurologic care for patients.
Coverage for Everyone
I have hereditary spastic paraplegia (HSP), a rare neurologic disease, and would like to see more articles about it. Perhaps in your Resources section, you could include the Spastic Paraplegia Foundation in Fremont, CA, which supports people with my condition as well as those with amyotrophic lateral sclerosis, primary lateral sclerosis, and other closely related diseases. I have only seen one article on HSP, and that was about 10 years ago. I have received the magazine since it began and enjoy the information it provides but would like to see coverage of my disease. —Kimberly Penn, Lucasville, OH
THE EDITOR RESPONDS: At Brain & Life, we strive to cover all neurologic disorders, including hereditary spastic paraplegia. We will continue to look for opportunities to write more about the condition.
CORRECTION: The feature article, “New Myasthenia Gravis Drugs Offer More Options to Patients,” in the Myasthenia Gravis Special Issue Summer 2022 incorrectly stated that efgartigimod (Vyvgart) is infused every two weeks. In fact, efgartigimod is given in cycles of one-hour infusions each week for four weeks. We regret the error.
