Longevity Secrets
I loved the article on aging successfully (“People in Their Nineties Share Tips for Longevity and Living Well,” December 2022/January 2023). I especially appreciated that Albert Pollack requested that guests to his 100th birthday party be vaccinated and boosted against COVID-19. He wants to live a full life and asks his family and friends to help him achieve that goal. —Joe Barrett, Asheville, NC
I want to be a “super ager” so much! I loved your piece on this topic, including the portrait of 92-year-old Anthony Sacco. Can that please be me at 92? In the last year I've lost more than 100 pounds, and at age 52 I feel more focused on health, diet, and exercise. I hope to achieve “super ager” status in the time I have left. —Nick Jones, Portsmouth, NH
Before visiting my mother for her birthday, I thought about the advice in the longevity feature. My mother has dementia, and its progression is difficult to watch. As I read the story, I noted all the things she did not do to protect her brain, including getting adequate sleep and following a healthy diet. It's my hope that as our population ages, we can improve our brain health and get better science to reverse the course of these diseases. —Tom Lamb, New York City
Long COVID Responses
I was thrilled to see a comprehensive article about long COVID (“The Latest on Possible Causes and Treatments for Long COVID,” December 2022/January 2023). I got COVID-19 in December 2021. The acute flu-like symptoms dissipated after two weeks, but I haven't gotten better. I also have multiple sclerosis (MS) and have been bedridden for a year and use a wheelchair when I go out. My COVID-19-related fatigue is different from MS fatigue but just as disabling. The strange and painful headaches that were my first symptoms still knock me out; the only thing that helps is lying on a heating pad. Every few weeks I have a persistent cough, and the body aches I feel from inactivity are indistinguishable from long COVID body aches. Just recently I've been able to exercise in a pool. Amazing to me, I can exercise for an hour, and, while a bit tired, I'm not immobilized by crushing fatigue. I'm slowly getting stronger, but I'm desperately seeking help for brain fog. Sometimes, while reaching for something, I'll forget what I'm reaching for. I can forget what I'm talking about midsentence. —Sharyn Digeronimo, Selden, NY
Your article on long-haul COVID was interesting. I developed similar symptoms after having swine flu in 1976. My blood pressure would drop to 70/50 and my heart would race. Cardiologists didn't totally disregard me, because my father died in his forties from a heart attack. It took 30 years to finally get diagnosed with postural orthostatic tachycardia syndrome (POTS) and dysautonomia and now autonomic neuropathy. I'm glad the life-changing diagnosis of POTS is getting more attention. —Melanie Ehrlich, Camarillo, CA
Online Obstacles
I appreciated the sensible advice in the article on patient portals (“How to Get the Most Benefit from Online Patient Portals,” October/November 2022). I have used them to contact my doctor with questions or requests for medication refills. Unfortunately, the terms for portal participation can substantially impede their use. Some require patients to waive their HIPAA rights. The system does not allow patients the right to say, “You can use my information for educational or research purposes, but strip out any personal identification.” —David Shapiro, Greenbelt, MD
Source of Inspiration
The many stories in your magazine of people overcoming adversity played an important role in my husband's long recovery from various health problems, including an aneurysm in 1997 and a massive stroke in 2010. Despite being paralyzed on his left side, he continues his childhood hobby of building and flying model airplanes. Like so many of your readers, his journey is an example of never giving up on life. —Fannie Cavazos, Hewgley, Leander, TX
After years of schooling, working, and raising a fantastic daughter, I looked forward to enjoying the fruits of my labor and welcoming my first grandchild. That all changed when some physical problems I'd experienced over the last 15 years worsened. After visits to doctors, emergency departments, and urgent care centers, and a series of MRIs, I was diagnosed with multiple sclerosis (MS). Because it was diagnosed so late, I now have permanent disabilities. When I asked why it took so long to diagnose me, I was told, “It's not typical for African Americans to get this disease.” In my subsequent journey to understand more about the disease, I found very little information relevant to African Americans. Where, I wondered, are people who look like me? I could count on one hand the number of African Americans with MS I have encountered in support groups, physical therapy offices, or infusion appointments, and as volunteers for patient organizations. It isn't because we don't get it but because it is not expected, and no one talks about it. Too often, Blacks are not included in conversations about MS or in studies or clinical trials. Nor are we kept abreast of many educational tools to help us live with this disease. I'm always looking for opportunities to share information and help others, which is why I started African American Resources for Multiple Sclerosis (AARMS). I'm also co-chair of the National Multiple Sclerosis Society Central Jersey Community Council and an advisory board member of the Multiple Sclerosis Association of America. I hope my story will inspire people to fight with all they have and to live as best they can. Life is more than your diagnosis. —Cynthia James, Jackson, NJ
THE EDITOR RESPONDS: Your stories are indeed inspiring. For more on Black Americans' experience with MS and how patients and physicians are addressing inequities in care, read How Multiple Sclerosis Affects Black People and How MS Specialists and Patient Advocates are Tackling Health Care Inequities.
Story Requests
Celine Dion recently announced that she has stiff person syndrome. I also have this condition. It would be great if you could feature her, as she is the first high-profile person to speak about this rare disorder. And maybe you could mention the Stiff Person Syndrome Research Foundation and its founder, Dr. Tara Zier. —Elizabeth Snow, Denver
The husband of a friend of mine has been diagnosed with Huntington's disease, and we are interested in reading more about the condition. As someone who gets migraine attacks, I subscribe to Brain & Life, but I don't remember seeing any articles on Huntington's. —Jacquelyn Green, Hoffman Estates, IL
Anxiety is a prevalent and serious symptom of neurologic disorders. Please consider including coverage of it in your excellent publication. —William Gaffin, Bloomfield, CT
THE EDITOR RESPONDS: We appreciate the suggestions about stiff person syndrome, Huntington's disease, and anxiety. For information about stiff person syndrome, read Celine Dion’s Diagnosis Raises Awareness of Stiff Person Syndrome. To read more about Huntington's disease, search for Huntington's disease on our site to read our articles on the condition. For our most recent article on anxiety, read Managing Anxiety in the Face of a Pandemic. Another article on anxiety is scheduled for this spring.
