Impact of Caregiving

I was very interested in the article “Sibling Caregivers are Supporting Brothers and Sisters Through Chronic Conditions” (August/September 2025) because I have a deep understanding of what it's like to be a child caregiver and have very strong feelings on the subject. I am 74, and when I was 10, in 1960, my beloved father had a major stroke. After a six-month hospitalization, my mother had to bring him home because there was no rehabilitation available for him in his condition. He was paralyzed and could only control the blinking of his eyes. He had his mental capacity. My mother informed me that I would be able to help her take care of him. At 12, I was inserting naso-gastric tubes, emptying urine bottles, and helping change tracheostomy tubes.

All of this caregiving had a major effect on my physical/emotional future. After years of talk and somatic therapy, I have overcome the scars childhood caregiving caused. I would caution parents to alleviate as much responsibility as possible from their children and not to ever put a child in the role of an adult. —Jill Jupiter, Culver City, CA

Supportive Strategies

My husband has advanced Parkinson's disease (PD) with dementia. My comfort and ability to go with the constantly changing flow was the knowledge that many people have been here before me and have dealt with this. They have not only coped—they have taken good care of their loved one. I am trying my best to do the same, and I have learned a great deal from his caregivers.

I now follow an online support group through the Parkinson's Foundation. You really realize you are not alone, and you hear good tips for helping your PD loved one through the process as well as yourself. —Caroline M. Kane, Phd, Berkeley, CA

I have a progressive neurological disease, cerebellar ataxia (specifically sporadic ataxia with multiple system atrophy). I am 61 years old and was diagnosed at age 36, but I stubbornly ignored/fought against symptoms for at least 10 years before this.

I can't gloss over the difficult times, the times when I feel defeated. However, I chose early on after my diagnosis to be open and honest with friends and family (and myself) about my disease and the probable future. This helped tremendously to relieve some of my stress and fear.

The best way that I have found to deal with stress and “the unknown” is consistent exercise. I grew up skiing, hiking, running, snowshoeing, biking, etc. Gradually, these things went away as my disease progressed. However, I have found biking on recumbent bikes year-round, hitting the gym (including my home gym), physical therapy, and the occasional massage are incredibly therapeutic. Of course this is all very good and necessary for my body, but I believe that my mind benefits the most—that and having an awesome wife helps me tackle my fears! —Krister Adams, Waterbury, VT

I have found much comfort in believing the promises of God found in the Bible. Hope is essential in any fight, and the Bible offers this hope. I'm going on 10 years with ALS [amyotrophic lateral sclerosis], and with my wonderful wife (and caregiver), I have hope.

One Bible verse that I repeat regularly is Proverbs 4:18: “The path of the righteous gets brighter and brighter until it reaches mid-day.” What better way to live life than with hope —whether in a new drug or a divine healing, hope is better than despair. Thank you for your magazine of Brain & Life—it's making a difference. —Manny Chirico, Franklin Lakes, NJ

Meningitis Vaccines

I read your article, “What Parents and College Students Need to Know About Meningitis Vaccines” (August/September 2025) and noticed an omission in the information provided. It says the U.S. Centers for Disease Control and Prevention suggests “that adults considered to be high-risk—including military personnel and those traveling to regions with higher incidences of the disease, such as sub-Saharan Africa—receive the meningitis B vaccine.” There are other groups of adults at high risk, namely those whose spleen has been removed or whose spleen is not functioning properly, or those with HIV. People in these risk groups should receive both meningitis vaccines and should continue to be vaccinated repeatedly throughout their lives on a schedule provided by their doctors.

Unfortunately, it is not easy for adults to get vaccinated for meningitis. After I had my spleen removed, I have only been able to get vaccinated at the hospital where my surgery was performed. —Roberta Fels, Englewood, NJ

Impact of Shingles

I would greatly appreciate an article that addresses post-herpetic neuralgia, particularly in the trigeminal nerve. It's been almost a year since shingles attacked the right side of my head, and while the facial rash resolved fairly quickly, the pain around my scalp, temple, and eye is always there, 24/7. Even my hair hurts. It would be helpful to hear from experts about the latest advances and possible suggestions to heal the trigeminal nerve, without the usual medications like gabapentin. —Myrna Freyman, Lakewood Ranch, FL

THE EDITOR RESPONDS: Thank you for your suggestion. We will consider highlighting this topic in a future feature.