Esteem for Estefan

Thank you, and Gloria Estefan, for the wonderful and uplifting article about paralysis recovery ("Giving Back," June/July 2019). I broke my back in a military aircraft incident in the mid-1960s and was paralyzed from the neck down. I was given a choice of doing nothing or having an operation to explore and attempt to repair the damage, but the odds were slim to none that I would improve. I chose to do nothing. Then one day I was awakened by the sensation that my feet were on fire. I yelled out in pain for the nurse, who arrived and notified the doctor on duty. After some tests, doctors determined that I had not severed or permanently damaged my spinal cord. I have recovered almost 100 percent and have been leading a full, active life since. I would like to give another shout-out to Gloria for a concert she gave in San Jose, CA, years ago where all tickets were affordable. What a show! What a wonderful individual. — George Badger, Soquel, CA

Foiling Fatigue

Thank you for the excellent article on fatigue ("Ease Exhaustion," June/July 2019). I've had chronic inflammatory demyelinating polyneuropathy [a neurologic disorder characterized by inflammation of the nerves and nerve roots resulting in weakness, numbness, and pain], which can cause serious fatigue, for about 10 years. I want to second your advice about exercise. Having a condition that makes me both weak and tired makes it hard to keep up with my day-to-day routine, let alone exercise, and easy to be inactive. But I know being sedentary contributes to loss of strength, muscle mass, and nerve function. After noticing that my arms and legs were getting much thinner, I started a serious exercise program for the first time in my life. It was difficult at first, and progress was slow, but I've regained quite a bit of my strength and stamina. My advice to others is to ask your doctor for a prescription for physical therapy for several weeks. A therapist will assess your condition, suggest exercises that will help you, and teach you how to do them properly. — Bill Henstock, Charleston, WV

I enjoyed your article about fatigue but was dismayed not to see any mention of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have this condition, along with other complicating problems, and hoped this article had information for patients like me. Maybe you can address this syndrome in future issues. I have gotten subscriptions for many of my family members to help them understand more about me and my problems and for others in my extended family who have neurologic disorders. — Lisa Zaret, Cincinnati

THE EDITOR RESPONDS: In "Ease Exhaustion," we chose to focus on fatigue as a symptom of neurologic disease. Please explore the site for articles on chronic fatigue syndrome.

Timely Topic

I read the article about Meniere's disease (Ask Your Neurologist, June/July 2019) before passing it on to someone I know who has the condition, although she's been in remission for a long time. She read it, and at her husband's next doctor's appointment, she mentioned that she might be experiencing symptoms again. Thanks to your article, she recognized new symptoms and is getting treated for them. — Christina Slater, Durham, NC

More Faces of Stroke

Your June/July issue was very interesting, particularly the article about stroke survivors ("The Many Faces of Stroke," June/July 2019). As a former administrator for a world-renowned neurologic institute and a survivor of a hemorrhagic stroke (four months after I retired), I was surprised the article did not include strokes caused by hemorrhaging of blood vessels in the brain. Admittedly these strokes account for a small percentage of all strokes, but they're worthy of mention nevertheless. I am still dealing with balance and speech (dysarthria) problems and have been to the appropriate therapists. I hope to see something about hemorrhagic stroke in coming issues. - Phil Pomeroy, Birmingham, AL

I just finished your article about stroke recovery and wanted to share my own experience. I had my first stroke in 1967 when I was 19 and on active duty in the United States Air Force (USAF). At the time, I was driving on the freeway and my right side suddenly went limp like an overcooked noodle. I managed to pull the car over to the shoulder, and within hours I was admitted to the USAF hospital, where doctors drew some spinal fluid. I developed speech problems, but after five days my speech cleared, and I regained use of my right side. When I had a second stroke in 1995, a brain MRI showed evidence of an earlier stroke. In addition to my strokes, I have sustained three traumatic brain injuries (TBIs). Between 1969 and the present, I have been an air traffic controller, a law enforcement officer, and an attorney, and I have taught criminal justice and writing at the university level. A lesson I learned in the military is applicable to stroke survivors: Never, ever quit on yourself. That drive allowed me to thrive after my two strokes, nine transient ischemic attacks, and three TBIs. I'm 70 and retired and glad to be alive. - Walter Dutton, San Diego

After having a stroke at birth, I developed a seizure disorder. Thanks to appropriate medication and a good neurologist, my seizures are under control. Over the decade I've been with my doctor, we've developed a healthy and trusting relationship, and he's helped me greatly. - Newman Webster, Pottstown, PA

I found your publication in my husband's neurologist's office seven years ago, and it became my faithful companion as I sought to understand his stroke and recovery, with all its neurologic complications. Even though my husband is gone, I continue to read Brain & Life. Now I have friends whose loved ones have sustained a stroke. We get together to bond over the struggles and challenges of caregiving. We also talk about positive and creative discoveries about the brain and neurology. Recently, a friend asked about different kinds of strokes, deficits, and recoveries. Two days later-voila!-I saw your article "The Many Faces of Stroke" and shared it with her. Thank you again for your commitment to helping people who are neurologically challenged and their caregivers through stories and up-to-date information. - Joan Beauregard, Richmond, TX

I am a speech-language pathologist who has worked with people with aphasia [the inability to understand or express speech, caused by brain damage from a stroke or other trauma] for more than 40 years. I am also founder of the Aphasia Community Group at Boston University, now in its 30th year. I was surprised that the article on stroke did not mention aphasia. Stroke survivors consistently report that they rarely receive information about aphasia during the acute phase. Your publication could be a helpful resource. - Jerome H. Kaplan, Boston

More Faces of Stroke: The Editor Responds

We have written about aphasia in past issues and will continue to do so. Please read archived articles on the topic.

Another Fun Run

After reading your article on fundraising run/walks ("Walk or Run for a Cause," June/July 2019), I was prompted to let you know of another event. Four years ago, I connected with two other women with complex regional pain syndrome (CRPS), and together we began raising money for the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), a national nonprofit group for people with CRPS. We also launched the first RSDSA Long Island Awareness Walk for CRPS. It has since expanded to become an expo as well as a walk, and last year more than 500 people attended. This year's event is on Saturday, September 7. - Stacey Udell, East Meadow, NY

A Handy Resource

I have been receiving your magazine for almost eight years. The articles are very helpful, and I am learning a great deal. My husband's mild cognitive impairment recently progressed to dementia, and he is just home from a surgery that caused delirium and a stay in rehab. All the travel and lack of sleep took its toll on me, as I have sleep apnea and hypersomnia. I know I was better prepared for what happened to him from studying Alzheimer's disease, attending caregiver support groups, using our portal to the neurologist caring for my husband, and reading Brain & Life magazine. Caring for my husband is the hardest thing I've ever done. Keep up the great work. Many of us are hanging on your every word and article! - Beverly Q. Ward, Harrisburg, NC

As a longtime reader of your publication, I have learned so much about neurologic disorders. I learned even more when I attended the Brain Health Fair in Philadelphia in May. It was awesome. I have epilepsy, my dad had Parkinson's, and my grandmother had amyotrophic lateral sclerosis. Doctors have told me there is no connection. In the meantime, I do what I can to raise awareness and funding for epilepsy. - Michael Lang, Fanwood, NJ