Letters June/July 2023

Letters to the Editor: June/July 2023

Perlman and Polio

I shared the wonderful article about Itzhak Perlman's experience living with polio and his advocacy on behalf of those with disabilities (“Violinist Itzhak Perlman Champions Accessibility for People with Disabilities,” April/May 2023) with my mother, who lives in a nursing home. She had polio as a child and currently has post-polio syndrome, which is underresearched by most accounts. The article was inspiring and informative. —Patricia Schuler, Phoenix, AZ

Parent Advocates

I really enjoyed the article about ordinary parents advocating for their children who have rare diseases (“How Parents Advocate for Their Children with Rare Diseases,” April/May 2023). It showed that you don't have to be famous to raise awareness and support people with these conditions. Although I don't have children who have rare diseases, I've had epilepsy since birth and have had to advocate for myself all my life. —Dave Alexander, Muskegon, MI

MSA Support

In your last issue, a reader requested information about multiple system atrophy (Letters, April/May 2023). I also would like more information on MSA. My husband was diagnosed with the condition in 2017 at age 86. He eventually died from the disease. I would like to know more, including whether it's hereditary, at what age symptoms usually appear, and the average life expectancy after diagnosis. —Jeanne Stenerson, Loveland, CO

For readers wanting information on MSA, I can recommend the MSA Coalition and a group for people with progressive supranuclear palsy (PSP) called the CurePSP Foundation. As a co-facilitator for the Connecticut CurePSP support group, I know about CurePSP resources, which include information, support groups, and other resources specific to MSA. CurePSP also covers the neurodegenerative disease corticobasal degeneration. —Allen Nixon, Farmington, CT

Household Tips

After reading the story about household chores and brain health (Healthy Living, April/May 2023), I wanted to share these tips that have made cleaning easier for me. Throw a dry towel in with wet clothes to shorten drying time by half. Keep disposable razors in baby oil and they'll stay sharp longer. Vaseline, or petroleum jelly, can remove lipstick stains and can protect against rust. Use toothpaste to clean headlights and taillights on vehicles. As for my memory, I try to stay sharp by playing games like word jumbles and visiting websites like luminosity.com. —Peggy Erickson, Minneapolis, MN

Heartfelt

The Speak Up essay “Make Yourself Heard” really hit home for me (April/May 2023). As parents, we must be advocates for our children. My daughter's situation—chronic strep throat when she was 7—was not as serious as that of the author's son, but it felt serious to me. I finally persuaded my pediatrician to authorize a tonsillectomy, and the problem was solved. After my daughter's surgery and full recovery, the doctor admitted, “Moms can be right!” As the author said in her essay, “Always listen to your heart.” —Michelle Piper, Brockport, NY

Take Care

In response to the editor's column about self-care (February/March 2023), I have my own cautionary tale about the dangers of ignoring self-care. My life has been punctuated by serious health crises—a traumatic brain injury in 1996, Parkinson's in 2005, and now cancer. Throughout each one, my husband, Marc, was my steadfast supporter. We learned too late that in devoting himself to my care, he neglected his own. After ignoring the effects of stress, he developed an atrial flutter and was hospitalized for an ablation. His condition worsened, and he was diagnosed with atrial fibrillation. In the flurry of my cancer treatments, Marc remained stoic, but his heart troubles were progressing, and on December 26, 2022, he died from congestive heart failure. I'm left with regrets: that we didn't reach out for help, that we didn't heed any physical or emotional warning signs, that we didn't protect our own health through diet and exercise. Belatedly, I realize that caring for ourselves allows us to care for others. —Nita Stika, PhD, Milwaukee, WI

Sleep Disorders

Thank you for the comprehensive article on sleep (“What Researchers Are Learning About Brain Health by Studying Sleep,” February/March 2023). As a patient representative on the recruitment, education, and outreach committee of the North American Prodromal Synucleinopathy (NAPS) Consortium, I want to encourage people who enact their dreams while sleeping to seek medical help to determine if they have REM sleep behavior disorder (RBD). Those who do can register at naps-rbd.org to get a better understanding of RBD and stay up-to-date on progress toward finding a therapy that slows or even stops neurodegeneration. —Ray Merrell, Hackettstown, NJ

Brain Trauma

As a traumatic brain injury survivor, I find your articles informative and interesting. Having made great strides over the 27 years since my injury, I can relate to what others have shared about the frustrations of living with this type of injury. It is truly a silent epidemic, and jumping back into daily life can be challenging even years later. —Robin Cohn, The Villages, FL

Our son, Daniel, sustained a traumatic brain injury while serving three tours in Afghanistan. Since he was deployed for long periods of time and lived in different states, we didn't realize the extent of the damage until last August 1, when he died by suicide at our ranch. At his memorial service, we learned more about how he was masking his symptoms. He never complained and always had a smile and a helping hand, ready to serve. He tried alternative therapies such as yoga and meditation, but nothing worked long-term. Our family is blessed to be part of a larger community, many of whom sent cards, food, and prayers. —Tanya Brown, Table Rock, NE