Frampton Shines On

I too have inclusion body myositis (IBM), and it is heartwarming to see this rare and disabling disorder so accurately presented ("Showing the Way," October/November 2020). It took me five years and 14 doctors before I was finally diagnosed in 2017. For those looking for answers to their physical symptoms, I hope this article will help shorten their search. IBM patients have great support through the Myositis Association, which has a global team of medical advisers. Indeed, the article is a message of hope. Thank you to Peter Frampton for sharing his IBM story. - Moonyean Smarzinski, Hot Springs Village, AR

I read the cover story about Peter Frampton with great interest as I also have a rare neuromuscular disease. I was diagnosed my with Stiff Person syndrome—a one in a million disease—in 2010. My doctor has been wonderful to me and my husband ever since we first saw him in December 2008. Like Mr. Frampton, I live with this day to day and year to year and take it in stride. Little research is done into these rare disease due to the low number of people diagnosed with them. Thanks for pointing out that living with a rare neuromuscular disease is not the end of life, it’s just a change. - Carol Barta, rcb6477@gmail.com

Relating to Loneliness

In the early days of the COVID-19 pandemic, I felt a real sense of loss and wanted to find a way to express my emotions. The feature on loneliness ("Too Loud a Solitude," October/November 2020) prompted me to pen a poem called "Lonely Versus Alone":
Being alone is not the same as being lonely / Time alone has been a refuge / Now as I age, alone is sadness / I'm not included or sought out / Not thought of or remembered / Is there a cure, a pill, a therapy? /My vessel needs filling /With purpose, hugs, passion / Stories to share / That's a life well lived /Let me tell you about the time I... - Susan Abrams, Sacramento, CA

My wife and I have been sequestered in our house for months now. We both have neurologic conditions—and my wife also has heart problems—that make us vulnerable to COVID-19. Our pit bull has been a big help in warding off loneliness. Readers who don't have a pet should consider getting one. - Jack A. Elder, Sandy, UT

I can relate to your article on loneliness. I have trigeminal neuralgia and wearing a mask is too painful, so that limits my ability to go out. I'm not married and don't have children, and my friends live in other parts of the country. I am housebound 80 percent of the time, and the isolation and loneliness I feel are sometimes overwhelming. - Carol Jay Levy, Lansdale, PA

Common Ground

The feature on Emilia Clarke ("Game Changer," August/September 2020) has helped me immensely in accepting my condition and explaining it to others. I find it very difficult to describe brain surgery for aneurysm, especially when I have no scars on my skull. I've had coils and a stent, like Clarke, and am now diagnosed with a giant basilar aneurysm, which caused trigeminal neuralgia and oculomotor palsy. My prognosis is not good, but Clarke's story gives me hope. - Stan Shemanski, Berlin, WI

ALS Awareness

I had read the article about Nanci Ryder online ("Fight of Her Life," April/May 2020) but recently acquired a copy of the print publication. It was nice to feel the weight of the magazine in my hands and think about the weight of amyotrophic lateral sclerosis (ALS) and its impact on so many. Thank you for continuing to spread awareness of ALS through powerful stories and poignant photographs. Nanci's picture brought me to tears. - Jodi O'Donnell Ames, Pennington, NJ

Soldiering On

I read your magazine regularly and have found much interesting information that helps me manage my own situation. Although I have no official diagnosis, I was told I have cerebellar atrophy and ataxia by neurologists at the National Institutes of Health after they reviewed my case as part of their Undiagnosed Diseases Network. After years of doctors' appointments and MRIs, I no longer see a neurologist. I use a walker in my house and a scooter for long distances. My supportive husband does all the cooking, laundry, housework, and driving. What brings me great comfort is creating and completing cross-stitch [a form of hand embroidery] designs. I have more than 850 on my website, susansaltzgiverdesigns.com, although now that I'm 75, I'm cutting back considerably. I also exercise every morning. I have always done the best I can with what I have. - Susan Saltzgiver, York, PA

Stroke Stories

I'm 45 years old, 5 feet 2 inches, 119 pounds, and active. I eat healthfully, and I don't smoke or drink—and I had a stroke. Strokes are often missed in young people who look healthy and don't have the typical risk factors such as a poor diet or a sedentary life. I am at risk due to having an elevated factor VIII, an inherited condition that increases the chances of blood clots. - Holly Beaugez, Ocean Springs, MS

I found Brain & Life on Facebook and have gleaned encouragement, understanding, and great suggestions from reading your articles. They provide the best information an aging stroke survivor like me could find. It makes me hopeful again and even put a dent in my depression. - Laura Pruitt, Portland, OR

Relatable Coverage

I wish to add my voice to the eloquent and poignant letters of Scott La Point and Cody Howe (“Letters,” October/November 2020) that asked for stories of regular folks whose lives don’t return to normal after a neurologic diagnosis or who have financial hardship and lack a caregiver or social safety net. There is clearly an unmet need among your audience. I challenge this magazine to alternate feature articles between celebrities and regular people. Help your readers to see the whole picture of neurology care in America. Our compassion does not depend upon a feature subject’s income. - Stephanie Adkins, PharmD, Georgetown, TX

Care Suggestion

In the article on caregiving (“Essential Workers,” October/November 2020 issue), you suggest that a senior residential facility may be the last place for a family member these days. I wanted to point out the Green House model of senior living, which offers an alternative to traditional nursing homes. During the current pandemic, their homes have had less than one-fifth the number of COVID-19 cases per thousand residents and less than one-twentieth the number of deaths as traditional nursing homes. This nonprofit organization operates more than 300 homes. - George Wedberg, Rockville, MD